Programme at a glance
Time
09.00–12.00
Grandmaster Suite
Perellos
14.00–17.00
18.00-19.00
19.00-20.30
Opening ceremony
08.30–10.00
10.00–10.30
10.30–12.00
12.00–13.00
13.00–14.00
14.00–15.30
PL1: Integrated Care
P4. Assistive technologies
P5. ALCOVE
P9. Dementia and the arts
P10. Interdem
P14. New Psychosocial
interventions
P15. Mediterranean
Alzheimer’s Alliance
P19. Involving people with
dementia
P20. Malta Dementia
Society
Coffee break and poster exhibition
Lunch
SS1: Lilly
P1.From diagnosis to
post-diagnostic support
P6. Care in the
community
P11. Carer training
10.00–10.30
10.30–12.00
P16. Residential care
12.00–13.00
13.00–14.00
SS3. EWGPWD
17.30–18.00
Pinto
PL2: Prevention
08.30–10.00
15.30–16.00
16.00–17.30
Verdala
Welcome reception
Friday, 11 October 2013
15.30–16.00
16.00–17.30
14.00–15.30
Thursday, 10 October 2013
Wignacourt
Vilhena
INTERDEM Meeting
Invitation only
Alzheimer Europe Annual
INTERDEM Meeting
General Meeting
Invitation only
Invitation only
SS2: STAR
P2. Preventing dementia
P3. Perceptions and
image of dementia
Coffee break and poster exhibition
P7. Research with people
P8. Dementia-friendly
with dementia
communities
Saturday, 12 October 2013
P12. Preventing carer
P13. Dementia strategies
burnout
Coffee break and poster exhibition
P17. Preventing
P18. Legal and ethical
behavioural problems
issues
and hospitalisation
Lunch
PL3. Innovation and
dementia
Coffee break and poster exhibition
PL4. Dementia
friendly society
Closing ceremony
1
Detailed Programme
Thursday, 10 October 2013
09.00–12.00 (CC Board Room): Alzheimer Europe Board Meeting
09.00–12.00 (Vilhena): Interdem Meeting
14.00–17.00 (Wignacourt): Alzheimer Europe Annual General Meeting
14.00–17.00 (Vilhena): Interdem Meeting
18.00-19.00 (Grandmaster Suite): Opening Ceremony
Welcome by

Stephen Abela, Chairperson, Malta Dementia Society

Heike von Lützau-Hohlbein, Chairperson, Alzheimer Europe

Helga Rohra, Chairperson, European Working Group of People with Dementia

Maltese Government Officials
Keynote lecture:

Tonio Borg, EU Commissioner for Health: The European Innovation Union’s commitment to
people with dementia and their carers
Address by:

His Excellency, the President of Malta
19.00–20.30: Welcome Reception
Friday, 11 October 2013
08.30–10.00 (Grandmaster Suite) Plenary Session PL1: Integrated Care
Chairperson: TBC

PL1.1. Geoff Huggins (Scottish Government): The commitement of the Scottish Government to
post-diagnostic support

PL1.2. Chris Gastmans (Belgium): Dignity-enhancing care for persons with dementia and its
application to advance directives

PL1.3. Gráinne McGettrick (Ireland): Building consensus and signposting the future: The
feasibility of palliative care for people with dementia

PL1.4. Jacqueline Parkes (United Kingdom): Providing integrated care for younger people with
dementia
10.00–10.30 Coffee break and poster exhibition (PO1–PO15)
10.30–12.00 (Grandmaster Suite) Plenary Session PL2: Prevention
Chairperson: TBC

PL2.1. Neville Vassalo (Malta): Diet intervention in the prevention of Alzheimer’s disease
dementia

PL2.2. Tiia Ngandu (Finland) (tbc): An overview of our current understanding of the prevention
of dementia

PL2.3. Armelle Leperre-Desplanques (France): Preventing behavioural problems and avoiding
the use of anti-psychotics – the recommendations of the ALCOVE project

PL2.4. Myrra Vernooij-Dassen (Netherlands): Preventing carer burnout through effective carer
support interventions
12.00–13.00 Lunch / Mittagessen
13.00–14.00 (Perellos) Special Symposium SS1:
This symposium is organised by Lilly
13.00-14.00 (Wignacourt) Special Symposium SS2:
This symposium is organised by the STAR Consortium.
14.00–15.30 (Perellos) Parallel Session P1: From diagnosis to post-diagnostic support
Chairperson:

P1.1. Horst Christian Vollmar (Germany): Changing attitudes towards dementia in general
practice
2

P1.2. May-Hilde Garden (Norway): Facing the challenges together: A family training
programme for younger people with dementia and their carers

P1.3. Krista Pajala (Finland): Network of memory expert and support centres provides
information and guidance in Finland

P1.4. Dawn Brooker (United Kingdom): Evidence based recommendations for timely diagnosis
of dementia: Benchmarking against the ALCOVE recommendations

P1.5. Milena von Kutzleben (Germany): How do family carers of community-dwelling people
with dementia perceive the onset of the disease? Results from a qualitative study using a
hermeneutic approach

P1.6. Steve Iliffe (United Kingdom): Does tailored education improve the diagnosis and
management of dementia in general practice? Findings from the EVIDEM-ED pragmatic cluster
RCT
14.00–15.30 (Wignacourt) Parallel Session P2: Preventing dementia
Chairperson:

P2.1. Sebastian Köhler (Netherlands): Risk factors for dementia: A systematic literature review
and Delphi expert consensus

P2.2. Hans J. Markowitsch (Germany): Healthy memory, healthy aging: The importance of
proper memory processing in age

P2.3. Lisa McGarrigle (Ireland): Low cognitive activity as a risk factor in cognitive decline

P2.4. Emel Koseoglu (Turkey): Lipid soluble vitamins, lipids and body mass index in Alzheimer
and vascular dementia

P2.5. Georgette-Marie Camilleri (Malta): Polyphenols in the prevention of Alzheimer’s disease
– some food for thought

P2.6. Jana Povová (Czech Republic): Epidemiology and genetics of Alzheimer’s disease
14.00–15.30 (Vilhena) Parallel Session P3: Perceptions and image of dementia
Chairperson:

P3.1. Olivier Constant (Belgium): How to change the dominant perceptions of dementia –
presentation of two recognized good practices

P3.2. Anthony Scerri (Malta): Evaluation of dementia knowledge, attitudes and educational
needs among nursing students

P3.3. Debby Gerritsen (Netherlands): Dementia in the movies: portrayal of life in an institution

P3.4. Laëtitia Ngatcha-Ribert (France): Perceptions of Alzheimer’s disease in the media and in
the cultural productions: evolutions from 2008 to 2013

P3.5. Patrice Mc Parland (United Kingdom): Dementia, What Comes to Mind?

P3.6. Stephen Cutler (USA): Concerns about cognitive functioning, dementia worries, and
psychological well-being
14.00–15.30 (Verdala) Parallel Session P4: Assistive technologies
Chairperson:

P4.1. Mary Connolly (Ireland): “INDEPENDENT – The Alzheimer Society telecare experience”

P4.2. Cornelia Schneider (Austria): Electronic assistance services for people with dementia

P4.3. Phillip Hartin (United Kingdom): MedRAM: An autonomous medication management
framework to schedule, remind and monitor adherence

P4.4. Lisa van Mierlo (Netherlands): DEM-DISC: an ICT tool for customised advice on care and
welfare services

P4.5. Sigrid Aketun (Norway): Assistive Technology (Welfare Technology) and Dementia –
Experiences from Alma´s House

P4.6. Ben Kicks (United Kingdom): Using gaming technology to benefit people with dementia
14.00–15.30 (Pinto) Parallel Session P5: ALCOVE.
This parallel session is organised by ALCOVE
15.30–16.00 Coffee break and poster exhibition
16.00–17.30 (Perellos) Parallel Session P6: Care in the community
Chairperson:

P6.1. Natalie Zerafa (Malta): Knowledge and therapeutic management of Alzheimer’s disease
among community pharmacists in the Maltese islands
3

P6.2. James Pearson (United Kingdom): Delivering integrated dementia care in Scotland: The
8 pillars model of community support

P6.3. Marijke van Dijk (Netherlands): Evaluation of the transition of institutional psychogeriatric
day care into easy-access community-based support centres for people with dementia and
their carers; a multicenter study

P6.4. Saskia Meyer (Germany): Nutritional situation of care-dependent people with dementia Associated with the living situation?

P6.5. Aud Johannessen (Norway): Motivating and discouraging factors with being a support
contact in the dementia care sector: a grounded theory study

P6.6. Stephen Abela (Malta): Time for Breakfast – an opportunity for meaningful activity in
hospitalized persons with dementia
16.00–17.30 (Wignacourt) Parallel Session P7: Research with people with dementia
Chairperson:

P7.1. Shamsi Kohkan (USA): Managing eligibility, amyloid related imaging abnormalities
(ARIA), and efficacy evaluations in Alzheimer disease clinical trials: Points to consider

P7.2. Marjolein Gysels (Netherlands): Obtaining and maintaining consent for research
participation from patients with impaired capacity: Best practice recommendations from the
MORECare consultation workshop on ethical issues in palliative care research

P7.3. Niall McCrae /United Kingdom): Experience of people with dementia and their carers in a
major clinical trial

P7.4. Gayle Borley (United Kingdom): Considerations when involving people with dementia in
research

P7.5. Louise Nygård (Sweden): Development of an easy-to-use videophone for people with
dementia

P7.6. Dianne Gove (Luxembourg): Alzheimer Europe recommendations on the ethics of
dementia research
16.00–17.30 (Vilhena) Parallel Session P8: Dementia friendly communities
Chairperson:

P8.1. Neil Mapes (United Kingdom): Connecting people living with dementia to nature: A
celebration of woodland

P8.2. Olivia Mastry (USA): ACT on Alzheimer’s: A unique toolkit available to all communities to
foster dementia capability

P8.3. Maria and Shaun Naidoo (United Kingdom): Connected Compassionate Communities
“Something to believe in” – the embodiment of life affirming energy and hope for the future

P8.4. Brian Malone on behalf of the Scottih Dementia Working Group (United Kingdom): . “I’d
like a dementia-friendly world, but I’ll start with my local community”

P8.5. Ian Sherriff (United Kingdom): Dementia friendly parishes around the Yealm

P8.6. Richard Ward (United Kingdom): The lived experience of the neighbourhood for carers of
people with dementia
16.00–17.30 (Verdala) Parallel Session P9: Dementia and the arts
Chairperson:

P9.1. Jutta E. Ataie (USA): A visual exploration of the dementia experience: Uncovering
multiple meanings of well-being

P9.2. Silvia Ragni (Italy): Aesthetic emotions in people with dementia: Making museum art
accessible to people with dementia

P9.3. Ann Pascoe (United Kingdom): How photography, blogging and the arts helped a person
with dementia accept his diagnosis

P9.4. Judith Mollard (France): Alzheimer’s disease and artistic mediation workshops

P9.5. Derek Eland (United Kingdom): (Don’t) Mention Dementia – groundbreaking engagement
work in the UK

P9.6. Sandra Oppikofer (Switzerland): “Awakened Art Stories” – rediscovering art with
dementia
16.00–17.30 (Pinto) Parallel Session P10: IINTERDEM
This parallel session is organised by INTERDEM.
4
Saturday, 12 October 2013
08.30–10.00 (Perellos) Parallel Session P11: Carer training
Chairperson:

P11.1. Rose-Marie Dröes (Netherlands): Development and evaluation of the European STAR
training portal: Skilling and re-skilling carers of people with dementia

P11.2. Fiona Kelly (United Kingdom): Care provision for people with dementia in Maltese
hospital wards: paradoxes between hospital staff perceptions and observational and audit data

P11.3. Daniel Grima (Malta): The nurses’ attitudes towards care of residents with dementia

P11.4. Bart Hattink (Netherlands): Into D’mentia: Development & evaluation of a virtual-reality
experience of dementia

P11.5. Caroline Brown (United Kingdom): Putting the positives into caring: A workshop
designed by carers for carers

P11.6. Sirkkaliisa Heimonen (Finland): Logotherapeutic approach enhances the skills of
professional carers
08.30-10.00 (Wignacourt) Parallel Session P12: Preventing carer burnout
Chairperson:

P12.1. Stefanie Auer (Austria): Alzheimer holiday in Austria

P12.2. Sandra Poudevida (Spain): Evaluation of a group psychotherapeutic intervention for
caregivers of people with Alzheimer’s disease

P12.3. Claudia Strasser (Denmark): New survey of needs among caregivers of people with
dementia

P12.4. Htay U Hla (United Kingdom): Promoting behaviour and coping in family carers of
people with dementia

P12.5. Catherine Bassal (Switzerland): Caring for residents with dementia: Interplay between
emotion, emotion regulation, and well-being in professional caregivers

P12.6. Karin Wolf-Ostermann (Germany): Dementia Care Networks in Germany: The
DEMNET-D-Study
08.30-10.00 (Vilhena) Parallel Session P13: Dementia strategies and policies
Chairperson:

P13.1. Marie-Odile Desana (France): The extension of the French Alzheimer plan to
neurodegenerative diseases

P13.2. K. Jones (United Kingdom): The role of dementia support workers in the community in
removing the barriers to isolation and exclusion following diagnosis

P13.3. Michael Splaine (USA): Dementia friendly initiatives: A report on national initiatives in
hospital care for persons with dementia

P13.4. Marc Wortmann (United Kingdom): Making dementia a global public health priority:
Translating global actions into local energy

P13.5. Anne-Marie Bruijs (Netherlands): Why case management fits in a dementia-friendly
society

P13.6.Areti Efthymiou (Greece): Impact of the economic crisis on carers of dementia patients
in Greece
08.30-10.00 (Verdala) Parallel Session P14: New psychosocial interventions
Chairperson: Monika Natlacen (Austria)

P14.1. Simone Willig (Germany): A lot of things work better with music – Music therapy and
dementia

P14.2.Maud Graff (Netherlands): Feasibility of a newly developed tailor-made social fitness
program for community-dwelling older people with dementia and caregivers

P14.3. Jeni Bell (United Kingdom): Admiral nursing in an acute hospital – creating a dementia
friendly hospital

P14.4. Iben Stephensen (Denmark): Non- pharmacological interventions in the field of
dementia

P14.5. Carola Döpp (Netherlands): Determinants for success and failure in the implementation
of an evidence based occupational therapy intervention in the Netherlands

P14.6. Alison Ward (United Kingdom): Developing a creative and theatre based intervention for
young people with dementia and their carers.
5
08.30-10.00 (Pinto) Parallel Session P15: Mediterranean Alzheimer’s Alliance
This parallel session is organised by the Mediterranean Alzheimer’s Alliance.
10.00–10.30 Coffee break and poster exhibition
10.30-12.00 (Perellos) Parallel Session P16: Residential care
Chairperson:

P16.1. Johannes Gräske (Germany): Proxy-rated quality of life in residential dementia care –
Identification of influencing factors

P16.2. Marion Villez (France): Gardens: living spaces for the well being of people with
dementia and their relatives

P16.3. Margareta Halek (Germany): Dementia Care Mapping intervention: the challenge of
improving daily practice in nursing homes

P16.4. Jean-Bernard Mabire (France): Social interaction and dementia: how people with
dementia behave when they are put in social situations? An observational study

P16.5. Iva Holmerová (Czech Republic): Data collection and processing in care of persons with
dementia

P16.6. Basel Kikhia (Sweden): Integrated sensor-based monitoring for people with dementia in
a nursing home to promote a person-centered care
10.30-12.00 (Wignacourt) Parallel Session P17: Preventing behavioural problems and
hospitalisation
Chairperson:

P17.1. Evan Morris (United Kingdom): Fire and rescue service and Age UK collaborate to keep
people with dementia safe, well and independent

P17.2. Annalisa Bonora (Italy): A management plan for people with dementia: an experience
of a special care unit

P17.3. Orrell Martin (United Kingdom): Cochrane Review: Case management for people with
dementia

P17.4. Knud D. Andersen (Denmark): Preventing aggressive behavior and BPSD – a
multicomponent method and organicational model

P17.5. Herlind Megges (Germany): Caregiver needs analysis for product development of an
assistive technology system in dementia care

P17.6. Afifa Qazi (United Kingdom): Cochrane Review: Psychological treatments for
depression and anxiety in dementia and mild cognitive impairment
10.30-12.00 (Vilhena) Parallel Session P18: Legal and ethical issues
Chairperson:

P18.1. Anna Mäki-Petäjä-Leinonen (Finland): A person with dementia and restriction of
freedom

P18.2. Jill Manthorpe (United Kingdom): Preventing crime and safeguarding people with
dementia

P18.3. Gary Mitchell (United Kingdom): The therapeutic use of doll therapy for people with
dementia: ethical considerations

P18.4. Maartje Wils (Netherlands): Improving advance care planning in patients with dementia
in a nursing home: defining facilitating factors and barriers

P18.5. Merja Riikonen (Finland): Moving on from the Home Door – Ethical aspects of using
tracking technology

P18.6. Maria do Rosário Zincke dos Reis (Portugal): After diagnosis support in Portugal –
Important issues on advance directives
10.30-12.00 (Verdala) Parallel Session P19: Involving people with dementia
Chairperson:

P19.1. Avril Dooley (Ireland): Learning Together – The Alzheimer Society of Ireland experience
of establishing the first Irish Working of People with Dementia

P19.2. Sally Osborne (Australia): “There’s a life for us, if we risk it!” Is a diagnosis of dementia
a risky business?

P19.3. Laura Tarzia (Australia): Don’t try and take over! Everyday decision making for people
with dementia and their family carers.

P19.4. Sabine Jansen (Germany): More participation for people with dementia
6

P19.5. Clare Cutler (United Kingdom): Tales of the sea: engaging people with dementia in
maritime archaeology

P19.6. Fritze Kristensen (Denmark): The biomedical concept of disease of Alzheimer’s disease
generates from a patient perspective a cleft between diagnosis and the life with dementia
10.30-12.00 (Pinto) Parallel Session P20: Malta Dementia Society
This parallel session is organised by the Malta Dementia Society.
12.00–13.00 Lunch
13.00–14.00 (Perellos) Special Symposium SS3:
This symposium is organised by Alzheimer Europe’s European Working Group of People with Dementia
(EWGPWD).
13.00–14.00 (Wignacourt) Special Symposium SS4:
This symposium is organised by
14.00–15.30 (Grandmaster Suite): Plenary Session PL3: Innovation and dementia
Chairperson:

PL3.1. Nina Baláčková (Czech Republic): Giving a voice to people with dementia – the
experience of the European Working Group of People with Dementia

PL3.2. Elisabetta Vaudano (Innovative Medicines Initiative) (tbc): Alzheimer’s disease – a key
priority of the European Union’s Innovative Medicines Intiative

PL3.3. David Mamo (Malta): The elephant in the room: Significance of optimising the
management of behavioural and psychological symptoms of dementia

PL3.4. Franka Meiland (Netherlands): Assistive technologies supporting people with dementia
and their carers
15.30–16.00 Coffee break and poster exhibition
16.00–17.30 (Grandmaster Suite): Plenary Session PL4: Dementia friendly society
Chairperson:

PL4.1. Joost van Hoof (Netherlands): Ageing-in-place: Living arrangements for people with
dementia in the community

PL4.2. Carmelo Aquilina (Malta/Australia): Persistence of the self in dementia

PL4.3. Anthea Innes (United Kingdom): Dementia care: personal journeys to dementia friendly
societies

PL4.4. Michael Hübel (European Commission) (tbc): Dementia as a European priority – The
European Alzheimer’s Initiative and beyond
17.30–18.00 (Grandmaster Suite): Closing Ceremony
Presentation and invitation to 24th Alzheimer Europe Conference in Glasgow, Scotland
Closing comments and farewell by:

Stephen Abela, Chairperson, Malta Dementia Society

Heike von Lützau-Hohlbein, Chairperson, Alzheimer Europe
7
Parallel Session Presentations
P1. From diagnosis to post-diagnostic support (Friday, 11 October, 14.00–
15.30, Perellos)
P1.1. Changing attitudes towards dementia in general practice
Vollmar Horst Christian, Michel Jacqueline Verena, Leve Verena, Wilm Stefan, Pentzek Michael
Introduction: General practitioners (GP) are assigned a central role in caring for persons with
dementia. The CADIF project (Changing Attitudes towards Dementia In Family practice) encompasses
the development and testing of an intervention that is based on a comprehensive understanding of GPs’
attitudes towards dementia. In addition to conducting a systematic review, identified research groups
were contacted to obtain further training material.
Research question: Existing interventions were aggregated by means of a systematic review. The
Düsseldorf Cochrane Group supported the formulation of search strategies. The search included
resources available in the databases Medline, Embase, Cochrane, CINAHL, Psychinfo, ERIC, Scopus
as well as Web of Science.
Results: A total of 10220 titles/abstracts was identified and reviewed by two independent researchers.
About 100 full-text publications were further analysed for eligibility. In terms of preliminary or qualitative
results, individual studies suggest that “peer-to-peer” interventions possibly have an effect on GPs’
attitudes.
Conclusions: The results of the systematic review serve as a basis for the development of an
intervention which is at first discussed by focus groups.
P1.2. Facing the challenges together: A family training programme for younger people with
dementia and their carers
Garden May-Hilde, Andersen Astrid
Background: Nearly three quarters of all local authorities in Norway provide support groups and
training opportunities for people with dementia and their carers. Despite having unique needs, very few
younger people with dementia receive an offer of support from their local authority. In 2012 Norwegian
Health Association and the National Centre for Aging and Health received financial support from
Norway’s Department of Health to organize eight courses across the country targeted at younger people
with dementia and their carers. The courses aim to give younger people with dementia and their carers
knowledge and support to help make their lives easier and better.
Method: To help plan the courses, we established working groups in Norway’s different health regions,
with representatives from specialist health services and the local Dementia Association. The course took
place over four days and included lectures, support groups, social activities. The course was evaluated
through interviews with participants in small discussion groups on the last day of the course.
Results: A total of 146 people (73 people with dementia and 73 carers) participated in the course. The
average age for people with dementia taking part was 62.4 years, and for carers was 58.6 years. The
evaluation revealed that the course had given participants an experience of increased openness in their
relationship with their family and more insight into their own situation. Carers received increased
knowledge and understanding of how dementia had an impact on their loved ones daily life and how
they could face the challenges together. Many described the participation in the programme as an
emotional recess, a boost in their everyday lives and an oasis for growth and self-respect. The training
programme will continue the next 3 years.
Conclusion: Younger people with dementia and their carers have a need to meet with others in the
same situation as themselves. This course has given people affected by dementia the opportunity to
meet and gain more insight into their own situation. The course has encouraged greater openness
between the person with dementia and their carer so that they can better talk with each other about
dementia and everyday challenges.
P1.3. Network of memory expert and support centres provides information and guidance in
Finland
Pajala Krista, Alaranta Maaret
More than 13,000 people in Finland are diagnosed with a dementing disease every year. Those with
progressive memory disorders need support and thus, they rely heavily on social welfare and health
care services. With early diagnosis of memory disorders and adequate treatment and support it is
possible to improve functional ability and their quality of life.
Funding granted by Finland’s Slot Machine Association in 2006 enabled alzheimer and dementia
associations in Finland to start nationwide pilot memory expert and support program. Thereafter 17
8
expert and support centres have been established which are managed by the alzheimer and dementia
associations, and they cover almost entire Finland.
The Alzheimer society of Finland coordinates the network of regional expert and support centres in
order to ensure that centres follow common criteria, which include a commitment to network, customer
orientation and evaluation of the work. The main goal is to improve and expand services for people with
memory disorders and their caregivers. The support centres aims to provide effective and well known
network in cooperation with other sectors concerned. Centres supports and promotes memory nurses
work in order to provide seamless care. In addition, one of the key targets is to improve the quality of life
of people with dementing disease and their caregivers by providing opportunities to participate in
activities organized by centres.
Expert and support centres have an important role in developing their know-how skills and expertise in
dementing diseases. Within 3.8 million euro and over 50 employees centres are able to ensure that the
people with dementing disease and their families are adequately informed of the memory disorders. The
centres organize different kind of information courses for people with memory disorders and their
families and also establishes voluntary and peer support groups. Regional centres not only provide
support and guidance to patients and their families, but also strengthen the collaboration in the
association field. With the help of regional centres voluntary associations are able to create links
between each other and with the local authorities. In network-sessions, organized by centres, future
challenges and new ways to organize the activities rise to important role.
So far with regional support centres it has been created a nation-wide network to strengthen volunteer
work and cooperation regarding dementing disease. As a result, services of people with memory
disorders have improved. Regional expert and support centres ensure that people with memory-related
diseases and their caregiver have the opportunity to influence and participate as a full member of their
own environment.
P1.4. Evidence based recommendations for timely diagnosis of dementia: Benchmarking
against the ALCOVE recommendations
Brooker Dawn, Evans Simon, La Fontaine Jenny, Bray Jennifer, Ashley Peter, Saad Karim
ALzheimer’s COoperative Valuation in Europe (ALCOVE) was a Joint Action co-financed by the
European Commission and a number of member states who led work programmes. This involved 30
partners from 19 EU Member States, working cooperatively to improve knowledge and promote
information exchange about dementia. Over the past two years, we worked to produce a set of evidence
based recommendations for policy makers on dementia.
The authors of this paper led the work on Early Diagnosis and Interventions, reviewing evidence from a
wide range of scientific, policy and qualitative literature on the technical issues on diagnosis and on the
process of diagnosis to ensure a person centred approach alongside a survey of current practice in 24
EU countries. Timely diagnosis is supported by the research literature and many European countries
want to improve diagnosis rates.
We reflected on this evidence through a series of discussion groups with people with dementia, family
carers and professionals (including Alzheimer Europe 2012) to develop evidence-based
recommendations. Recommendations are provided in the key areas of timely detection, the diagnostic
process, complex diagnoses, response to early cognitive changes and work-force. Underpinning
principles include the need to decrease fear and stigma; respecting the centrality of the rights and
wishes of the person with suspected dementia; recognition that the diagnosis of dementia is a key
intervention and that the needs of the person and their family/significant others are central to
assessment, diagnosis and post-diagnostic interventions.
A sound and sensitively delivered diagnosis is a key intervention that shapes how the person with
dementia and their family integrates this into their lives. The recommendations and the underlying
development work will be shared in this presentation. Using the ALCOVE recommendations it is
possible to benchmark the progress at a local, national and European level. This will be of interest to all
those involved in the process of wanting to improve both the numbers of people diagnosed and the
quality of that diagnosis.
Acknowledgements to Contributing Authors:
Dr Armelle Leperre – Desplanques, Haute Autorité de Santé, France;
Tomás López-Peña Ordoñez, Institudo de Salud Carlos III, Spain;
Pr Michal Novak, Slovenska Akademia Vied – Neuroimmunologicky Ustav, Slovakia;
Pr Nicola Vanacore, Istituto Superiore di Sanita, Italy;
Dr Helka Hosia-Randel, National Institute of Health and Welfare, Finland;
Bénédicte Gombault, King Baudoin Fundation, Belgium;
Pr Anders Wimo, Karolinska Institute, Sweden
9
P1.5. How do family carers of community-dwelling people with dementia perceive the onset
of the disease? Results from a qualitative study using a hermeneutic approach
Milena von Kutzleben
Background: Informal carers are the main care providers for community-dwelling persons with
dementia in terms of providing as well as organising care. The results presented here come from a
comprehensive mixed-methods study (VerAH-Dem) on care arrangements for community-dwelling
persons with dementia in Germany. The qualitative arm of the VerAH-Dem study aims to examine how
primary carers make everyday decisions regarding service utilisation over the course of the disease.
The research questions for this presentation are: How do informal carers interpret first symptoms and
how do they perceive the onset of the disease?
Methods: A sample of primary carers (n=8) was interviewed using guided interviews with a highly
narrative approach. ‘Objective Hermeneutics’ is applied in the data analysis to conduct case
reconstructions. Data analysis is ongoing, complete case reconstructions will be available at the time of
the presentation.
Results: In most care arrangements one family member assumed the role of the primary carer and
made decisions widely autonomously. In retrospective narratives family carers often avoided naming the
cognitive decline of their relatives ‘dementia’, even if they were aware of the diagnosis back then. In
general, families tended to postpone seeking medical advice for a while. Different approaches to
interpret first symptoms became apparent: While some felt alerted by noticing physical deficits, others
perceived cognitive decline as the most profound change. Carers searched for external references to
gain orientation, to comprehend the situation, and to prepare for their role as informal caregivers. Some
assumed the existence of certain rules regarding the stages and course of the illness, which made it
easier for them to find orientation and to prepare for the future. The lack of mental capacity was
perceived differently. In some cases the person with dementia was seen and treated like a child that had
to be cared for, while others were struggling to take over the decision making power in this early stage
of the disease. Overall, everyday decision-making seems to be by far more implicit than explicit and
carers tend to act according to their habitual routines.
Discussion: Families try to maintain normality and routines for as long as possible – this includes a
certain period of denial, before seeking clarity through a confirmed diagnosis. This period could be
crucial for the success and stability of the care arrangement over the course of the disease. The
domesticity is the most common care setting for persons with dementia and as health and social care
systems are highly reliant on these resources, structures have to be developed that enable informal
carers to ‘do their work’ and supporting them, rather than treating them as cases that have to be
managed from the outside.
P1.6. Does tailored education improve the diagnosis and management of dementia in
general practice? Findings from the EVIDEM-ED pragmatic cluster RCT
Iliffe Steve, Wilcock Jane, Jain Priya, Thuné-Boyle Ingela
Purpose: Primary care has a pivotal role to play in dementia diagnosis and management but underperformance is common. Policy pressure and financial incentivisation of dementia care in the NHS
provides an ideal opportunity to test an educational intervention.
Methods: We tested a tailored educational intervention package for primary care designed to improve
diagnosis and clinical management in an unblinded cluster RCT in twenty-three urban, semi-urban and
rural group practices in South East England. A search of electronic medical records identified 1072
people with dementia across the practices. The intervention consisted of up to three practice-based
workshops, with their content derived from prior educational needs assessment and educational
prescriptions, delivered by experienced tutors. The main outcome measures were case detection pre
and post intervention, and rates of two or more documented annual management reviews of people with
dementia.
Results: Case detection before and after intervention was not significantly different between arms. The
estimated Incidence Rate Ratio for the intervention versus the control group was 1.03, (95% CI (0.57,
1.86), p=0.93). The number of people with dementia with two or more annual management reviews
documented did not differ between the two arms. The odds ratio for two or more reviews in the
intervention arm compared with normal care was 0.83 (95% CI (0.52, 1.33), p=0.44).
Consequences: Despite high face-validity, positive feedback from practitioners and ideal conditions for
promoting change, a tailored educational intervention does not improve dementia earlier identification or
later support of people with dementia in general practice. This English study may have implications for
development of community-based dementia services in other countries.
10
P2. Preventing dementia (Friday, 11 October, 14.00–15.30, Wjgnacourt)
P2.1. Risk factors for dementia: A systematic literature review and Delphi expert consensus
Köhler Sebastian, Verhey Frans, van Boxtel Martin, de Vugt Marjolein, Deckers Kay, Irving Kate for the InMINDD project team
Background: Identifying the major midlife risk factors for dementia is crucial to effective preventive
strategies and improve healthy late life cognitive functioning. There exists a considerable literature of
potential risk factors for dementia, but the validity and status of individual factors are often uncertain,
based on few studies, or inconsistent. Some important reviews have been published in recent years 1 2.
However, the field is rapidly evolving and hence this information might not be most up-to-date, and
some novel risk factors might have emerged in the meantime. The FP-7 funded In-MINDD (INnovative
Midlife INtervention into Dementia Deterrence) project uses two complementary approaches to
summarize the best evidence on preventive factors: a systematic literature review and a Delphi expert
study.
Methods: In the Delphi study, eight leading European and non-European dementia experts were asked
for their opinion regarding important risk factors. Their responses were synthesized with information
from an updated systematic review. The literature search was conducted in PubMed using the search
strategy from Plassman et al. (2010) 1. All new publications between October 2009 and December 2012
were included if they fulfilled the following inclusion criteria: population-based cases and controls;
sample size N>200, follow-up duration >1year; participants aged ≥ 45 years; prospective design;
outcomes: incident dementia, incident cognitive impairment, cognitive decline on repeated measures.
The search yielded 3,127 abstracts, of which 327 (10.5%) were included based on title and abstract for
further scrutiny. From these, information on study design, exposure and outcome measurement and
direction and magnitude of effects were extracted. Results were then pooled with the original review by
Plassman et al. (2010) 1.
Results: All top-10 risk factors named by experts were among the best-documented risk factors based
on the systematic review, and all were included among the most important risk factors from a previous
review 2. There seems to be good evidence from prospective studies for the following midlife risk factors:
hypertension, depression, diabetes, obesity, physical inactivity, smoking and alcohol consumption. In
contrast, some candidate risk factors emerged from the review that require further validation. These
include: hyperlipidemia, coronary heart disease, low cognitive activity, renal dysfunction and functional
impairment.
Conclusions: There is considerable agreement among dementia experts and current best-evidence
literature on the role of several risk factors for cognitive decline and dementia. This provide strong
support for somatic and lifestyle factors in the etiology of dementia and flag several important targets for
prevention in midlife. Some novel risk factors like renal dysfunction were detected that will be subject to
further study within the In-MINDD project.
P2.2. Healthy memory, healthy aging: The importance of proper memory processing in age
Markowitsch Hans J., Staniloiu Angelica
Memory is defined as being composed of several systems, each with its distinct neural basis. Of these
systems the episodic-autobiographical one is considered to have evolved latest and to be most
vulnerable to brain damage, stress conditions, and the effects of age (Markowitsch and Staniloiu,
Amnesic disorders. Lancet, 2012). Episodic-autobiographical memory allows mental time travelling into
past and future and a synchronization between emotional and cognitive aspects of events.
Consequently, especially structures of the limbic system and the prefrontal cortex are regarded as
essential for an appropriate processing of autobiographical events. The prefrontal cortex, however, is
known to deteriorate with age and to affect more complex functions of memory such as free recall,
metamemory, source memory, prospective memory. Positive feelings, on the other hand, are
dominating over negative ones in healthy aging. Both factors interact and determine the well-being in
age.
We will discuss variables and prerequisites for proper learning and memory during the life span with an
emphasis on changes in memory processing in both healthy individuals and those with beginning
memory deterioration – in particular with age-related degenerative diseases. Furthermore, we will use
own results from functional brain imaging studies in normal subjects of different ages to depict the
development of autobiographical memory across the life span and to argue for the importance of the
ventromedial prefrontal cortex for an integrated binding of memory, based on aspects of time, self, and
consciousness.
P2.3. Low cognitive activity as a risk factor in cognitive decline
McGarrigle Lisa, Boran Lorraine, Irving Kate, Verhey Frans, von Boxtel Martin, Kohler Sebastian
Aims: The main objectives of this research are to model the roles of cognitive activity in developing, as
well as protecting against dementia by initially conducting a meta-analysis of cognitive dementia
risk/protective factors, and then validating these models in a longitudinal ageing study data set. Low
11
cognitive activity in middle age has been identified as a risk factor in cognitive decline; however the
relative risk of this factor remains unknown. However, the impact of high cognitive activity as a
protective factor against dementia is unclear. High levels of cognitive activity are thought to boost
cognitive reserve (CR) or the brain’s capacity to cope with pathology in order to minimise
symptomatology (Siedlecki et al, 2009). Even though models of CR have proved wanting because of the
lack of evidence to address the issue of construct validity; Satz et al.’s (2011) four-factor conceptual
model of reserve is empirically testable. This study therefore aims to investigate the role of cognitive
activity in dementia risk and protection using Satz et al.’s (2011) conceptual model of CR.
Methods: The methodology will adopt a dual approach that will include both meta-analyses and
validation of a risk and protective model. Two meta-analyses will be conducted to evaluate the role of
low cognitive activity as a risk factor and high cognitive activity as a protective factor in cognitive decline.
Satz et al. (2011) CR model will be tested against two longitudinal ageing study datasets – MAAS
(N=1800) and DESCRIPA (N=880). The Maastricht Ageing Study (MAAS) is a 15-year follow-up study
on cognitive ageing. The CR model will be developed using this large dataset of risk factors and
cognitive decline/dementia outcomes. The model will then be validated using an independent dataset
from the DESCRIPA study – a multi-centre European cohort study on ageing and dementia. This study
will also have 15 years of follow-up at the time of analysis.
P2.4. Lipid soluble vitamins, lipids and body mass index in Alzheimer and vascular
dementia
Koseoglu Emel, Baydemir Recep, Saraymen Recep, Cetin Aysun
Aim: This study is aimed to evaluate serum vitamin A,E,D and K, lipids and body mass index in people
with Alzheimer and vascular dementia with respect to healthy control group; and the relations between
these parameters, hoping to find a clue for the prevention of dementia.
Patients and Methods: Sixty people with Alzheimer dementia, 52 with vascular dementia and, 61 sex
and age matched healthy persons were involved into the study. In addition to the investigations for the
evaluation of dementia; serum vitamin A,D,E,K and lipids’ levels (total cholesterol, trigliceride, LDL,
HDL) were measured; body mass indexes were calculated in all subjects. The study groups were
compared with respect to these parameters. Additionally, the relationships between the parameters
were examined in all groups.
Results: Among the vitamins, only vitamin D was found to be lower in dementia groups with respect to
the healthy group (p<0.001). No significant difference was found between Alzheimer and vascular
dementia groups. With regards to lipids, only total cholesterol level was found to be significantly higher
in dementia groups than that in healthy control group (p=0.001). No significant difference existed
between Alzheimer and vascular dementia groups. There was not any significant difference among the
study groups with regard to body mass index.
On the evaluation of the relationships among the levels of vitamins and lipids, vitamin D was found to be
negatively correlated with total cholesterol (p<0.05) in only healthy control group. There was not any
significant relationship in dementia groups.
On examining the relationship of body mass index with other parameters, it was detected to be
correlated with triglyceride level in vascular dementia group (p<0.005) and
in the control group
(p<0.05).
Conclusion: Low vitamin D level and high total cholesterol level were found to be associated with
Alzheimer and vascular dementia groups. Body mass index appeared not to play any substantial role in
dementia. The absence of the likely negative relation between vitamin D and total cholesterol in the
dementia groups as found in the control group made us to think that the possible regulatory
mechanisms between vitamin D and total cholesterol was impaired in both Alzheimer and vascular
dementia.
P2.5. Polyphenols in the prevention of Alzheimer's disease - some food for thought?
Camilleri Georgette-Marie
The production and accumulation of abnormally folded beta-amyloid peptides and microtubule
associated protein tau in the brain is a major hallmarks in the pathophysiology of Alzheimer's disease.
This poster aims to review the mechanisms through which several polyphenolic compounds, present in
our diet, act to delay beta-amyloid plaque formation in the brain. This can in turn, delay the onset and
progression of cognitive deterioration in Alzheimer's disease.
Epigallocatechin-3-gallate, the main polyphenolic constituent of green tea, was shown to reduce betaamyloid plaque generation, possibly by promoting α-secretase cleavage of amyloid precursor protein, as
well as by inhibting the activity of various pro-inflammatory cytokines. Moderate consumption of red
wine, rich in polyphenol resveratrol, decreases the level of reactive oxygen species in the brain, and can
also act directly to promote beta-amyloid lowering activity. Based on the fact that the majority of
polyphenolic compounds found in red wine are derived from the grape seed and skin, grape-seed
polyphenol extract can also be used as a red wine alternative, to interfere with the assembly of amyloid
12
beta plaques and possibly tau peptides into neurotoxic aggregates. Anthocyanins present in berries and
curcumin found in turmeric have also been shown to be neuroprotective.
All in all, Alzheimer's disease is a growing public health concern with potentially devastating effects.
Simple measures, such as consuming a diet rich in polyphenolic compounds may help to prevent or
slow the progression of cognitive impairment in our population.
P2.6. Epidemiology and genetics of Alzheimer´s disease
Povova Jana, Janout Vladimír, Sery Omar, Tomaskova Hana, Ambroz Petr, Pohlidalova Anna
Alzheimer´s disease (AD) is one of the most important diseases in the world affecting older population.
Official statistics are likely to significantly underestimate the actual prevalence of AD. In the Czech
Republic there is about 120,000 cases officially registered and etiology is not known only suspected in
form of genetic, vascular and psychosocial risk factors.
In 2010 research project Epidemiology and Genetics of Alzheimer´s disease has been launched in the
Czech Republic to asses the effect of those risk factors on the group of 800 cases of AD and group of
800 controls.
Pilot evaluation presents results from 361cases and 130 controls. It is suggested, that patients with AD
have more often cardiovascular disease in their history, they drink more alcohol and more smoke. In this
pilot evaluation there has not been found statistically significant difference in diabetes mellitus,
hypertension and cerebrovascular disease, probably because of small sample size.
Relationship among the ApoE4 allele and the higher risk of AD has been found.
Supported by the Czech Ministry of Health grant project no. NT11152-6/2010.
P3. Perceptions and image of dementia (Friday, 11 October, 14.00–15.30,
Vilhena)
P3.1. How to change the dominant perceptions of dementia – presentation of two
recognised good practices
Constant Olivier
People with dementia are often faced with prejudice and media tend to reinforce the stigmatization of
dementia. As a result, people with dementia, but also those around them, lose contact with local society
and become isolated. The broad-scale academic study ‘Frames and counter-frames: giving meaning to
dementia’ helps us to understand the so called ‘dominant frames’. These images and ways of speaking
about dementia spread a one-sided negative image of the disease. Therefore the use of ‘counterframes’, a discourse that focusses more on the possibilities of people with dementia, is necessary. The
research is not only inspiring for caregivers who want to evaluate their communication. It is argued that
a more resolute use of the counter-frames in the communication about dementia might reduce the
stigma that surrounds dementia.
With the campaign ‘Vergeet dementie, onthou mens’, the Flemish government wants to implement these
inspirational research results. In this presentation, we focus on the communication strategy, the online
and offline campaign tools and the rise of some unique ‘dementia-friendly projects’ that carry out the
message of empowerment for people with dementia, their caregivers and their loved ones. The
campaign works bottom-up, in permanent reciprocity with the main target groups. The objective: the
implementation of local good practices of integrated care that are an inspiration for further national and
international projects that aim to reduce the stigma on dementia.
This approach was recently also recognized by the Flemish media. With the large scale solidarity
campaign ‘Music For Life for dementia’, the Flemish Expertise Centre On Dementia, The Flemish
Alzheimer League and the Alzheimer Research Foundation launched an international unseen initiative.
For the first time the national media set up a sustainable campaign to reduce the stigma on dementia.
Their tools: the power of music and memory, the creation of a badge to show your support for people
with dementia and their caregivers, a massive launch of local actions to thank people who wear the
badge and an online platform to register your personal memories through music, as a way to show the
power of reminiscence.
The result: 625 000 sold ‘badges for life’, more than 20000 registered ‘songs for life’ and the live
performance of an intergenerational choir of people with dementia opening up for the rock band Muse.
But most importantly: people with dementia, their caregivers and professionals could speak out, seven
days long, 24 hours a day. Recent research shows us not only the massive impact of the campaign, but
also gives us more information about the perception that people have of dementia and care giving for
people with dementia. To conclude, we present the most important facts & figures and set up a future
strategy for local, national and international projects that want to break down the taboo concerning
dementia.
13
P3.2. Evaluation of dementia knowledge, attitudes and educational needs among nursing
students
Scerri Anthony, Scerri Charles
With increasing number of individuals with dementia, nursing students are more likely to come into
contact and care for dementia patients during their clinical placements and once they qualify.
Nevertheless, they may not be adequately trained during their undergraduate study programme and lack
of support during their placements may negatively influence nursing students' attitudes. Thus,
measuring the level of knowledge, attitudes and educational needs of nursing students could be an
important step in providing evidence on the need of enhancing dementia care training in the nursing
curriculum. A questionnaire survey consisting of the Alzheimer’s Disease Knowledge Scale (ADKS), the
Dementia Attitude Scale (ADS) and a self-developed 3-point Likert scale assessing students’ training
and educational needs was distributed to all nursing students reading for their degree at the Faculty of
Health Science at the University of Malta. The findings (61.3% response rate) indicated that nursing
students had an adequate knowledge and showed positive attitudes towards individuals with dementia,
including Alzheimer’s disease. Age, academic year, level of training and previous care of dementia
patients during clinical placement were all found to be associated with increased knowledge and positive
attitudes. Dealing with challenging behaviour scored the highest on the training and education needs by
students. Significant gender differences were reported on the necessity of having more training on
communications skills, individualised care plans, care and treatment decision-taking and end-of-life
patient management and care. In conclusion, knowledge and attitudes of nursing students in Malta
towards persons with dementia could be markedly improved by enhancing dementia care training and
improving their clinical experience.
P3.3. Dementia in the movies: portrayal of life in an institution
Gerritsen Debby, Roel Wendy, Kuin Yolande
Background: Although dementia is affecting more than 30 million people worldwide, negative
stereotypes about the consequences of dementia are still highly prevalent. Research shows that the
general public’s knowledge and beliefs about dementia need enhancement and that persons with
dementia and their caregivers experience stigma. Stigma is also attached to nursing homes and those
who work in them.
It has been shown that the portrayal of psychiatric illnesses in movies and on television influences the
public’s perception and contributes to the stigmatization of these illnesses. Yet, little is known about the
quality of the depiction of dementia in the movies, including the portrayal of life in an institution.
Aim: to study the portrayal of the professional environment of persons with dementia in recent motion
pictures by considering the following questions: 1) how is the physical institutional environment
displayed and 2) what institutional policies are presented?
Method: Motion pictures were sought on the Internet Movie Database. Using the search terms
‘dementia’, ‘Alzheimer’s disease’ and ‘senility’, the titles and keywords were searched up to March 1,
2012. Only movies released in or after 2000 were retained.
Inclusion criteria were: 1) (possible) dementia is a theme, which is clear because it is mentioned in the
movie; 2) a long term care institution is shown; 3) the person with dementia is older than 65; 4) the
movie is accessible for a large audience, which was operationalized as ‘released in the USA and either
the United Kingdom or the Netherlands’; 5) the movie could be obtained by the authors. This selection
procedure resulted in 12 films: Son of the Bride, Iris, The Notebook, Away from her, The Savages, Is
Anybody There?, Choke, Black, Il y a longtemps que je t ‘ aime, Win win, It runs in the family, The
curious case of Benjamin Button.
Independently, the authors watched all movies, selected relevant scenes and described observational
information; one of them literally wrote down the dialogue of the relevant scenes. After having seen each
movie, the researchers independently scored an observational measure derived from several existing
measures rating the institutional environment. Also, they noted displayed information about institutional
policies. Then, they discussed their scoring and reached consensus on differences of opinion.
Results: 1) In general, the physical environment of the institutions shown is agreeable. However, in
several movies, the second and third floor are mentioned as floors for ‘the more progressed’ and are
portrayed soberly with patients sitting apathetic in wheel chairs, in their pajamas.
2) Five movies show one or more extraordinary policies. For instance, in two movies the person with
dementia is chained to his bed (in one of these even with an iron chain). In another two the husband is
forbidden to visit his wife, which, in one of these, concerns the first 30 days of her stay.
Conclusion: In most movies the depiction of institutions is twofold: although in most the atmosphere is
rather good, especially for persons with mild dementia. Several movies show negative stereotypes,
specifically in more advanced dementia. To prevent stigmatization the depiction of the professional
environment in motion pictures needs improvement.
14
P3.4. Perceptions of Alzheimer’s disease in the media and in the cultural productions:
evolutions from 2008 to 2013
Ngatcha-Ribert Laëtitia
The representation of Alzheimer’s disease in media and culture has increased significantly, giving rise to
a rich, subtle and complex production.
Fondation Médéric Alzheimer has conducted a study to measure how the perception of Alzheimer’s
disease, people with dementia and their caregivers has evolved in the media and culture within the last
five years. Media include printed press, documentaries, awareness campaigns. Cultural productions
include fiction materials such as novels, theater plays, films, television series etc.
Methods: the national and international Press review of the Fondation Médéric Alzheimer (about 60
pages monthly) has been analyzed over the last five years. This core corpus was enriched by a further
bibliographic search in media and cultural productions.
Results: Observed trends show that:

Alzheimer’s disease has been trivialized, becoming a “background noise” both in media
(coverage of research advances, local stories) and fiction works (notable use by singers and
comedians, development of child literature etc.)

Discourse became more elaborate, sophisticated, diversified and much more complex than ten
years ago. Terms became more technical. Dossiers about neurosciences and neuro-imaging
do not hesitate now to be precise.

Two main questions arise often: “What to show?”, “What and how to communicate?”, without
miserabilism or overly naïve optimism. Alzheimer’s associations are notably faced to this critical
issue. Recently, some films (like The Iron Lady) have been controversial, giving rise to
discussions and debates in the public space.

Several iconic figures embody the “struggle” against Alzheimer’s disease: “medical stars” are
still leading the show through their technical expertise; in the same time, the mythical figure of
the caregiver supporting the person with dementia has been given a different place; regarding
to people with dementia, even if Alzheimer’s disease may still sometimes be perceived as
shameful, some figures have decided to reveal their disease in a media-covered coming-out.

The person with dementia may be entrusted with an anthropological-like function of a truthteller (provided by her presumed sincerity, unpretentious honesty, as a “deprived” human
being) and of a whistleblower revealing dysfunctions of the society.
Conclusion: Social representations have significantly evolved in the recent period. Issues surrounding
Alzheimer’s disease appear now in emerging countries, like China, India or South Korea. Little is known
about social representations of the disease in the Arab world or in Africa.
P3.5. Dementia, What Comes to Mind?
Mc Parland Patricia
Background: Recent policy recognizes the importance of public awareness and the implications in
terms of help seeking behavior and early diagnosis. However public understandings are also significant
in terms of the ways people respond to someone who has dementia. Despite increasing awareness of
dementia, people living with this condition continue to be marginalised and stigmatised. Their
citizenship and status as members of society is not secure. This paper reports on qualitative findings
from a PhD study exploring how the general public understand and respond to dementia. Specifically, it
describes the self-reported responses of the general public to people with dementia and discusses how
these views might impact on their status in society,
Methods: This was a mixed methods study carried out in Northern Ireland. It included an attitudinal
survey with 1200 people, five focus groups with 32 participants and nine one to one interviews.
Vignettes were used to explore public perceptions in focus groups. Survey data were analysed using
SPSS (V19) and a thematic analysis was carried out on the qualitative data using NVivo 9.
Findings: Members of the general public view people with dementia as “other” and take steps to create
social and psychological distance. A paternalistic generosity masks a deeply stigmatising response to
people living with dementia. Ageism, stereotyping, nihilism and infantilisation were all evidenced in the
self-reported responses of the public. Participants used stories to contextualise their knowledge and
this experiential knowledge is anecdotally repeated as the facts of dementia rather than of an individual
experience. The public do not see dementia as a progressive condition but rather they have a fixed
image of dementia as linked to frail older people and poor care in nursing homes.
Conclusions: Despite increasing knowledge about dementia and improved awareness, the attitudes of
the general public to people living with dementia remain entrenched in notions of the living shell and of
people who are no longer there. These attitudes are deeply stigmatising, perpetuate stereotypes and
have considerable implications in terms of citizenship and dementia friendly societies. The relatively
recent cultural shift to ideas of successful ageing potentially further disenfranchises those with dementia
15
who personify ideas of unsuccessful, dependant ageing. There is no sense of a life worth living with
dementia, rather dementia is seen as hopeless.
P3.6. Concerns about cognitive functioning, dementia worries, and psychological wellbeing
Cutler Stephen, Hodgson Lynne
Objectives: This study seeks to determine whether psychological well-being is affected by concerns
about cognitive functioning and worries about developing dementia.
Methods: We use three waves of data collected in 2000, 2005, and 2011 from two samples of persons
ages 40-60 at T1 (total N at T3=177): (1) adult children with a parent diagnosed with probable
Alzheimer’s disease (AD), and (2) a matched control group with no parental history of AD. The principle
predictor is a summative measure (α=.77) of the number of waves Rs scored high on five indicators of
concerns about cognitive functioning and worries about dementia. Outcome measures include the
number of waves Rs were high on depression and stress and low on life satisfaction and mastery.
Regression analyses for each outcome were run with six predictors: (1) the composite measure of
cognitive and AD concerns, (2) which subsample R was in, (3) a concerns/subsample interaction term,
(4) R's educational attainment, (5) R's age, and (6) R's sex.
Results: For all psychological well-being outcomes, the cognitive and AD concerns measure was a
significant predictor (p<.001) net of other effects. Neither subsample nor the concerns/subsample
interaction term reached significance. Education was the only other predictor to reach significance, but
just in the case of mastery (p<.05).
Discussion: Over an 11-year period, the more continuous one’s concerns and worries were about
cognitive functioning and developing AD, the more likely were such concerns and worries to be
detrimental to psychological well-being. Specifically, the greater the number of waves Rs expressed
various concerns and worries about cognition and AD, the greater the number of waves Rs were found
to be high on depression and stress and low on life satisfaction and mastery. These effects held
regardless of whether Rs were from families where a parent had been diagnosed with AD or from
families with no parental history of AD. That our measure of concerns and worries about cognitive
functioning and AD appears to be a strong and robust predictor should alert practitioners and others to
this source of threats to psychological well-being.
P4. Assistive technologies (Friday, 11 October, 14.00–15.30, Verdala)
P4.1. “INDEPENDENT – The Alzheimer Society telecare experience”
Connolly Mary
The Alzheimer Society of Ireland (ASI) has among its strategic priorities 2009-2013:

To expand the range and number of dementia services for existing service users and those
awaiting services

To promote new service models based on innovative practice and comprehensive evaluation
ASI collaborated with Tunstall Emergency Response and the Work Research Centre in 2007 and have
delivered a telecare service in Limerick mid-west and Dublin mid-Leinster areas ever since. This
telecare service is in the form of packages of telecare which include items such as pressure mats,
property exit sensors, fall detectors, enuresis sensors, bed occupancy sensors. These items are
installed in the houses of ASI clients with dementia to assist them in living in their own homes. The
Work Research Centre and ASI evaluated how these packages of telecare assisted carers in the homes
of people with dementia. Some of the carers of persons with dementia who were interviewed reported
the following benefits of the packages:
“Peace of mind – You can now sleep at night, you now know if anything happens you know about it.”
“On one occasion he fell asleep whilst cooking. Telecare woke him up – it would have been fatal only for
telecare.”
“It gives me great peace of mind at night and I know she is safe regarding the cooker and or water being
left on. It has been a great benefit to me.”
In 2010 a partnership was formed between the Alzheimer Society of Ireland, The Work Research Centre
and Tunstall Emergency Response and the collaboration became part of the INDEPENDENT project.
“INDEPENDENT is a European pilot project that brings together twenty partner organisations across six
European Member States which aims at better capitalising on information and communications
technology (ICT) when it comes to supporting older people in their communities. The ultimate goal is to
empower older people to maintain their independence.”
This funding has been used to enhance the communication between the telecare alerts received by
Tunstall Emergency Response from the homes of people with dementia and the Alzheimer Society of
Ireland. This was done via a web based portal, through which ASI staff can now log in and see how
their clients are using the telecare packages.
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The new web based portal allows the Home Care Co-ordinators at ASI to see exactly when the alert
happened in their client’s home and the response to it. They can then adjust the care delivery to their
client to match their changing needs. The web based portal also allows ASI to recycle packages,
directing them to new service users in need of telecare thus making the service more efficient. The Work
Research Centre are the evaluators for the INDEPENDENT project.
P4.2. Electronic assistance services for people with dementia
Schneider Cornelia, Willner Viktoria, Turcu Ileana, Spiru Luiza
Background: People with mild to moderate dementia have to deal with a lot of challenges in their daily
life. Generally, they have problems with time-space relationships and orientation even in familiar places.
They suffer from moderate memory loss and have troubles in handling complex problems. Common
routes and various tasks (shopping, housekeeping or simply taking a walk) become a daily challenge.
As a result they get fearful, unsure in their daily routine, and consequently they gradually lose their
mobility, independence and social insertion. Recently, it became more and more clear that various
information and communication technology (ICT) based applications might significantly support the
elders in dealing with their dementia caused deficiencies. Several such systems (e.g. GEOCARE or
MethusaTrack1) that mainly address orientation loss are already on the market. They allow people with
dementia to get help in case of emergency by simply pressing a panic button. Or, based on a predefined
set of geographic boundaries, these systems automatically raise an alert and forward it to a call centre if
the person is leaving a safe area. A great challenge in assisting people with dementia is the extreme
individual variability of their disabilities.
The Confidence project: The project aims at providing assistance services for people with mild-tomoderate dementia, adaptable to their individual needs. Its main goal is to offer a mobile phone
application that combines “assistive technologies” with “personal help”. The mobile Confidence
application is planned as a “virtual companion”, able to provide different levels of assistance that can be
adapted depending on the situational needs of the patient and the degree of orientation loss.
Conceptually five assistive modules are planned: (1) assistance and training at home, (2) virtual voice
service, (3) virtual video service, (4) location tracking service and (5) mobile community service. For
example if people lose their orientation the service will be activated either manually or automatically and
the necessary help will be provided. A special aim of the project is to build up of a community consisting
of family members, employees of home care agencies and trusted volunteers (neighbours, friends or
social volunteers). The community members will use the Confidence application for collaborating in
providing integrated services for people with mild-to-moderate dementia. The project deals with several
critical matters concerning the design of Ambient Assisted Living (AAL) applications: identification of the
specific needs and preferences of people with dementia, applications adaptable to the permanent
changes of end-users needs, compliance of people with cognitive and/or physical impairments to
assistive technology, specific ethical aspects (the informed consent, the local and European regulations
related to personal data management, exit strategies etc.).
Lessons learned and estimated impact: The user-centered, easy-to-use and adaptable design of ICT
based applications is the main factor to be able to guarantee the efficiency and acceptance by the
elderly with special needs. These assistive applications initially envisage physical and sensory
disabilities of the elderly. The actual multidisciplinary research equally envisages the cognitive ones. Such applications may significantly improve the quality of life of the elderly and may reduce the burden
of formal and informal carers. Additionally, they represent one of the golden answers that science and
technology may provide to global aging and ‘dementia crisis’ challenges, by improving the long-term
assistance of people with special needs and by reducing their institutionalization and care costs.
P4.3. MedRAM: An autonomous medication management framework to schedule, remind
and monitor adherence
Hartin Phillip, Nugent Chris, Chen Luke
With non-adherence of prescribed medications estimated to directly contribute €125 billion in annual
healthcare costs and in addition to being attributed to approximately 194,500 deaths a year in the
European Union, the need for improved adherence is increasing rapidly. There are many factors that
contribute to non-adherence, however, the most prevalent is forgetfulness. Alzheimer’s disease, and
other forms of dementia, exacerbate forgetfulness due to a decline in performance of executive
functions, such as working memory, attention, planning and task switching, all of which are required to
accurately manage a medication schedule independently. The aim of this work is to develop an
autonomous medication management system, to adaptably schedule medication times in accordance
with the activities of the user, deliver reminders when necessary and to reliably monitor adherence to
the medications with minimal human intervention.
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The proposed MedRAM (Medication Reminders and Adherence Monitoring) system makes use of smart
environment technologies to provide a technological approach to medication management to relieve an
element of the burden for carers and to provide an accurate measure of adherence. Each user will have
their own medication profile describing their prescribed medications times, dosages, special instructions
in addition to any drug interactions. Sensors embedded in household objects are used to detect the
location and current activity of the user, such as eating, sleeping or watching television. Based on their
activity an intelligent reminder service will determine the best time to deliver a reminder to the user and
in the best suitable format. For example, if the user was watching television, using Smart TV
functionality, the television will pause and prompt the user that they are due to take their medications.
This prompt can be ‘snoozed’ for an allocated time, however, afterward the TV would then not resume
until the medication is taken. Another example is if a medication should be taken with food, and the user
is currently eating, they would be reminded that they should take their related medication at the same
time. The system will be capable of recognising and recording medication adherence times via sensors
located in the medicine cabinet. Given the time that medications are taken, any time-window that should
be followed will automatically reschedule the next dose, to ensure there is no risk of overdose. The
medicine cabinet will also be weight sensitive, measuring the size of dose taken to ensure the correct
dose was taken.
The MedRAM system has the potential to address the aforementioned barriers relating to forgetfulness
for persons with Alzheimer’s, by unobtrusively assisting the user with one aspect of their daily lives that
demands high performance of executive functions. The developed system will be evaluated in an
assisted living facility to establish its impact on adherence levels.
P4.4. DEM-DISC: an ICT tool for customised advice on care and welfare services
Van Mierlo Lisa, Meiland Franka, Van Hout Hein, Dröes Rose-Marie
Objectives: Though a wide variety of care and support services are available for the growing number of
community-dwelling people with dementia and their informal carers, the available care and support is
not effectively used by them. Reasons for this are: they are not aware of the offer, are not referred to it
or do not use it because they expect the available care not to be attuned to their needs. The DEMentia
Digital Interactive Social Chart (DEM-DISC) was developed to provide carers of persons with dementia
with demand-orientated, web-based, tailored information on the social chart for dementia care. A pilot
version was tested in a controlled trial and the results were positive: persons with dementia and informal
carers had more met, and less unmet, needs, while informal carers reported higher levels of sense of
competence compared to the controls. The aim of the present study was 1) to further improve the pilot
version of the DEM-DISC so that care and support advice can be provided in a more tailored way, and
2) to evaluate the user-friendliness, usefulness and effects of the improved DEM-DISC among (in)formal
caregivers and people with dementia, and to study barriers and facilitators of the implementation of
DEM-DISC.
Methods: To evaluate the effect of DEM-DISC on (in)formal caregivers and people with dementia a
randomised controlled trial was conducted as part of a larger study into casemanagement. People in the
experimental group received DEM-DISC in addition to casemanagement for at least half a year up to
one year, while people in the control group received casemanagement, but did not have access to DEMDISC, they gathered information regarding available services as usual (via the general practitioner,
newspaper, internet). Primary outcome measures were (un)met needs of persons with dementia and
informal caregivers, sense of competence of informal caregivers, and experienced added value of DEMDISC in professional caregivers. The user-friendliness and usefulness of DEM-DISC is measured by
the USE-questionnaire among informal and professional caregivers. A process evaluation was done
using semi-structured interviews with stakeholders, to get insight into barriers and facilitators of
implementation of DEM-DISC. The study is performed in four regions of the Netherlands.
Results: Preliminary results indicate that informal caregivers find DEM-DISC relatively easy to learn and
user-friendly. First impressions of professional caregivers are that, though they value DEM-DISC as an
important tool, they expect new (and less experienced) employees to benefit most from using DEMDISC. Professional carers think DEM-DISC can be particularly useful when referring clients to care
services outside the region they work in. Further results on the user-friendliness, usefulness, and
effectiveness of DEM-DISC will be presented at the conference.
Conclusion: The DEM-DISC is a promising tool to support carers of persons with dementia with tailored
information on care and welfare services in dementia care.
P4.5. Assistive Technology (Welfare Technology) and Dementia – Experiences from Alma´s
House
Aketun Sigrid, Stigen Linda
Background for project: In Norway more than 70 000 persons have dementia and the number will
probably double by 2040. Research and experience show that people with dementia and their family
carers do not have sufficient information and access to assistive aids and technology that could support
them and make their situation better and safer.
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Aim of project: Establish a centre for welfare technology with a demonstration flat that contains
dementia friendly physical environment, assistive aids and technology. The target groups of the centre
are health personnel, decision makers and the public, as well as persons with dementia and their carers
with individual visits.
Method: Develop and describe the process of the different visits by different target groups. The flat was
designed in co-operation with an architect with competence in universal design and a lighting designer.
In addition there was carried out a service design process, describing the needs of and designing the
service for the different target groups and the content in different demonstrations. Emphasis is put on
designing the service as a dynamic link in the process of improving and supporting the home situation of
people with dementia. Also the process of obtaining or applying for different aids technology was
discussed and planned.
Results and conclusions: The target of designing a demonstration flat with dementia friendly
environment and welfare technology is reached. From 9th of October 2012 the flat is in operation as a
new service for knowledge and competence at the Oslo Geriatric Resource Centre. The service and
demonstrations include a dynamic co-operation with different actors and institutions, including local
occupational therapists and other health personnel, dementia teams, nursing homes and the national
insurance agency for funding of technology. It is also an arena for dialogue with researchers, developers
and distributors of technology, as well as users.
Alma´s House is run and serviced by occupational therapists with specific competence in dementia, and
knowledge of welfare technology for activity, wellbeing, participation and safety. This is crucial for the
quality and content of the service.
P4.6. Using gaming technology to benefit people with dementia
Hicks Ben, Cutler Clare, Innes Anthea
There is little research exploring the experiences of people with dementia and their engagement with
technologies such as the Nintendo Wii, Nintendo DS and the Apple I Pad. Engaging people with
dementia and their carers in the use of these technologies can promote social engagement, mental
stimulation, and physical activity. This presentation will report on a pilot project, conducted in the South
of England involving people with dementia in a ‘Technology Club’, which aimed to encourage
engagement in social and leisure activities through the use of the above technologies. It will also explore
the behaviours adopted by the researchers to ensure people with dementia were able to participate and
engage with the activities.
This pilot study identified that the Technology Club provided opportunities for social interaction,
stimulation and access to learning. There was huge significance around the desire to learn and the
importance of support. The Nintendo Wii and Apple I Pad were found to be the most enjoyed and
beneficial technologies used. In particular participants reported that bowling and balance games were
the most fun of all the Wii games. Google Earth, was the most popular app used on the I Pad. The
Nintendo DS proved to be less popular due to its small screen and difficult navigation routes.
Researcher’s behaviours were key in removing the ‘fear factor’ associated with technology and
encouraging people with dementia to participate and engage with the gaming activities.
Technology can aid people with dementia in developing and acquiring new skills and knowledge.
Games and apps such as bowling, balance games and Google Earth are exciting ways to encourage
people with dementia to exercise, challenge their physical abilities and to have fun. However, the
facilitating behaviours of those leading the activity sessions are vitally important in ensuring its success.
A larger research study is required to test the initial findings on a larger scale.
P5. ALCOVE (Friday, 11 October, 14.00-15.30, Pinto)
P6. Care in the community (Friday, 11 October, 16.00–17.30, Perellos)
P6.1. Knowledge and therapeutic management of Alzheimer’s disease among community
pharmacists in the Maltese islands
Zerafa Natalie, Scerri Charles
In view of the projected increase in the elderly population in the coming years and the inevitable
associated rise in the incidence and prevalence of neurological illnesses, healthcare professionals need
to have a better understanding in the various aspects of care and management of Alzheimer’s disease
(AD). Notwithstanding the ever-increasing role of community pharmacists towards the optimization of
service provision to individuals with AD, their caregivers and family members, little is known on their
level of knowledge about the disease process and its pharmacotherapeutic management. In the present
study, all community pharmacists practising in the Maltese islands were invited to participate in a survey
aimed at measuring knowledge, attitudes, pharmacotherapy and level of services available to individuals
with AD in the community. The overall findings (56.8% response rate) showed that increased age,
number of years working as community pharmacist and increase in the number of years since
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graduation were negatively correlated with knowledge on AD. There was significant lack of awareness
on AD pharmacotherapy including the use of antipsychotics in the management of challenging
behaviour in AD. Most community pharmacists are not familiar with the services available for these
individuals and that communication between the various health professions is almost inexistent.
Considering that community pharmacists come into frequent contact with individuals with AD, these
results show a need for increasing knowledge about AD among these healthcare professionals in the
hope of enhancing high-quality dementia care in the community.
P6.2. Delivering integrated dementia care in Scotland: The 8 pillars model of community
support
Pearson James
Scotland is currently moving towards integration of health and social care. The Scottish Government
plans to introduce a new legal framework creating new Health and Social Care Partnerships, which will
give shared responsibility to National Health Service (NHS) Boards and Scottish Local Authorities. In
September 2012, Alzheimer Scotland published, Delivering Integrated Dementia Care: The 8 Pillars
model of Community Support. The report sits within this integration agenda and sets out a blueprint for
a more effective, structured, coordinated and strategic approach to the use of existing resources for the
delivery of integrated dementia care and better outcomes of people with dementia and those who care
for them.
The Eight Pillar Model builds on the significant progress of Scotland’s National Dementia Strategy
(2010-13) in addressing the priority areas of improvements in acute hospital care and post diagnostic
support. In particular the model builds upon the ground breaking commitment to provide every person
diagnosed with dementia with a minimum guarantee of one years post diagnostic support based on a
model developed by Alzheimer Scotland. Scotland is currently developing a revised strategy for 20132016 and this includes a commitment to test the 8 Pillar Model in sites across Scotland. The model is
contains eight key pillars. These are;

A Dementia Practice Coordinator

Therapeutic interventions to tackle the symptoms of dementia

General health care and treatment

Mental Health Care and Treatment

Personalised Support

Support for carers

Environment

Community Connections
This presentation begins by setting out the underlying human rights principles of the Eight Pillar Model.
Next the presentation explains how the model enables health and social care interventions to work hand
in hand to deliver coordinated, therapeutic and personalised community supports which tackle the
symptoms of dementia and support people with dementia to continue to live at home, in their own
communities, for as long as they choose. Finally, the presentation will provide up to date findings from
the Eight Pillar Model test sites across Scotland.
P6.3. Evaluation of the transition of institutional psychogeriatric day care into easy-access
community-based support centres for people with dementia and their carers; a multicenter
study
Van Dijk Marijke, Meiland Franka, Dröes Rose-Marie
Background: Quality of care is not only determined by its efficacy, but also by its accessibility,
efficiency and patient-centeredness. An example of good care addressing these quality criteria is the
Meeting Centres Support Programme (MCSP) for people with dementia and their carers. MCSP offers
proven (cost-)effective support, attuned to the needs of participants and is offered in socially integrated
easy-access community centres. In this implementation study, six traditional psychogeriatric day care
centres in nursing homes made the transition to easy-access community-based psychogeriatric day
care centres according to the MCSP-model. The transition process and potential surplus value are
evaluated.
Method: Data were collected in six day care centres before and after the transition. The (cost)effectiveness of new day care centres is studied by a pretest-posttest control group design with
standard questionnaires among people with dementia and their informal carers. Measurements took
place at the start of participation, and after 3 and 6 months (in both conditions). User satisfaction was
measured after 6 months. A process evaluation of the transition is performed by means of interviews
with key figures (n=34) who were involved in making the transition from traditional day care centres to
easy-access community-based day care centres. The interview data were independently coded by two
researchers and analyzed, using the computer programme Atlas TI.
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Results: Six institutional day centers are succesfully transformed to easy-access community-based
support centres for people with dementia and their carers. First results of the process evaluation show
that close cooperation with regional care and welfare organizations, additional financing by the
municipality, the possibility to adjust the MCSP-model to the local situation, and a suitable location
facilitate a successful transition. Staff members having difficulties with working according to the new
person-centered care model, and other meeting centres in the vicinity, impeded the transition.
Preliminary results of our study on user- and staff satisfaction before and after the transition, will also be
presented.
Conclusion: Traditional psychogeriatric day centers are able to transform succesfully to a more easyaccessible, socially-integrated and combined MCSP-approach for people with dementia and their
carers, and first results show that these new day care centres are highly valued by its users. Based on
final analysis of the interviews with key figures in August 2013, a transition model is presented to
support other traditional psychogeriatric day cares to make this transition.
P6.4. Nutritional situation of care-dependent people with fementia - Associated with the
living situation?
Meyer Saskia, Fleischer-Schlechtiger Nadine, Gräske Johannes, Worch Andreas, Wolf-Ostermann Karin
Objectives: People in old age often have a malnutrition, especially people with dementia (pwd).
Malnourished people are at a high risk of developing major complications such as e.g. decubitus or falls.
In Germany, shared-housing arrangement (SHA) for care-dependent people evolved as an alternative to
nursing homes in the last years. But it is still unclear if this setting is more beneficial in terms of nutrition
and health-related outcomes. Therefore the aim of the present study was, to compare the nutritional and
health situation of care-dependent pwd living in SHA and in nursing homes.
Methods: In a standardized cross-sectional study, data concerning the nutritional status (BMI, MNA),
cognitive impairment (MMSE) health outcomes (e.g. decubitus, falls) as well as socio-demographic
characteristics of 60 pwd from 34 SHA in Berlin/Germany and 69 pwd from a nursing home in
Leipzig/Germany were collected.
Results: Data from 129 residents are included in the analysis. Residents are mostly female (76.7%) and
on average 80.4 years old with a moderate to severe cognitive decline (MMSE: 13.8). Residents from
SHA have a slightly but not statistically significant higher BMI-score (26.4) than residents from the
nursing home (BMI 25.4), (t-test, p=.114). But pwd from SHA have a significant higher MNA-score (21.2)
than pwd from nursing home (MNA: 18.3), (t-test, p=.006). Adjusting for socio-demographic
characteristics, age, decubitus, falls and MMSE residents in SHA show a significantly higher BMI-score
(ANCOVA, p=.004, R2 .205) and MNA-score (ANCOVA, p<.001, R2 .414). Significant more residents in
the nursing home (27.5%) than in SHA (6.7%) have decubitus (Fisher´s exact test, p=.002).
Conclusion: The care of pwd should include risk assessments concerning the nutritional status,
especially when living in nursing homes. The results show that the concept of SHA seems to be
beneficial for pwd regarding nutrition and resulting health outcomes.
P6.5. Motivating and discouraging factors with being a support contact in the dementia care
sector: a grounded theory study
Johannessen Aud, Hallberg Ulrika, Möller Anders
Background: People with dementia need different forms of assistance as the disorder progresses. In
Norway, support contacts work as “paid friends” and their role can be compared with respite carers or
voluntary workers’ in other Western countries. Support contacts may be helpful within the dementia
sector, especially in the early stages of the disorder, though they are rarely used.
Aim: The aim of this study was to find out how the support contacts perceive their work.
Method: Grounded theory, a qualitative method, with interviews of 19 participants (14 women and 5
men aged 40-75 years) during 2009-2010, from 12 local authorities.
Findings: This study describes the participants’ motives for becoming a support contact and their
encouraging and discouraging experiences while being a support contact, expressed as four sets of
opposites; flexibility vs. rigidity; being compensated vs. feeling used; affiliation vs. abandonment; and
satisfaction vs. lack of satisfaction.
Conclusion: Greater flexibility, adequate compensation, a sense of affiliation and satisfaction, together
with potential for building relationship with families, are factors that will encourage dementia care
supporters to continue with their work.
P6.6. Time for Breakfast – an opportunity for meaningful activity in hospitalized persons
with dementia
Abela Stephen, Galea Doris, Abela Maria, Dalli James, Baldacchino Kristin, Chetcuti-Galea Roberta
Background and Aim: It is well established that people with dementia encounter challenging
experiences when admitted to acute hospital settings in view of their complex care needs and the
streamlined hospital environment (Cunningham C. and Archibald C., 2006). A previous evaluation of
dementia care practices at the Rehabilitation Hospital Karin Grech (Innes A. and Kelly F., 2012) showed
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missed opportunity for activities especially in relation to everyday routines. The aim of this project was to
promote a rehabilitation philosophy during breakfast, increasing mobility, meaningful activity,
independence, nutrition and wellbeing of people with dementia.
Methods: A brainstorming meeting was organized between the ward interdisciplinary team members.
During this initial meeting, promoting activity during breakfast time was identified for further
development. The breakfast group was introduced in February 2013 whereby a small number of semiindependent persons were encouraged to walk to the dining area so that they could help themselves to
a buffet-style breakfast. Further evaluation will be carried out to estimate the number of persons
participating in this project, their diagnosis, the stage of dementia, functional levels, any problems
encountered and a customer feedback questionnaire.
Results: The breakfast group was received positively by ward staff. From the initial SWOT feedback,
the main benefits identified were helping clients regain their skills and independence in self-caring,
improving nutrition and encouraging socializing. The breakfast group was promoted as serving to help
establish a daily routine and positively influence successful home discharge. The main concerns were
the risks associated with safety e.g. falls or other injuries. Further results on the outcome of this group
over a six-month period will be presented in the final paper.
Conclusions: In a geriatric hospital setting, the breakfast time can be adapted as an opportunity for
meaningful activity. This approach can be implemented successfully only through collaborative team
work and positive involvement of all grades of staff.
P7. Research with people with dementia (Friday, 11 October, 16.00–17.30,
Wignacourt)
P7.1. Managing eligibility, amyloid related imaging abnormalities (ARIA), and efficacy
evaluations in Alzheimer disease clinical trials: Points to consider
Shamsi Kohkan, Patt Rick
Alzheimer disease is extensively being investigated in clinical trials. Imaging is utilized for patient’s
eligibility, efficacy evaluation and safety evaluations. Patient’s eligibility, efficacy and safety are
evaluated by Magnetic Resonance Imaging (MRI) and FDG-PET is used for efficacy assessments.
Evaluation of images for patient eligibility: Many neurological diseases that could either have similar
presentation as Alzheimer disease or could be confounding factors in the assessment of drug therapy
have to be excluded to evaluate therapeutic effect of a drug on AD patient population. These include
vascular dementia, multiple sclerosis, vascular pathology, neoplasms etc. Inclusion of wrong patient has
serious have ethical and legal issues. More importantly, these patients could be excluded from the
analysis thereby reducing the sample size and impacting the power of the study and the study results. In
this presentation, various strategies of eligibility evaluation will be presented and optimization of
eligibility read process will be discussed
Evaluation of Amyloid Related Imaging Abnormalities (ARIA): Initially these abnormalities were
observed in monoclonal antibody against amyloid-β (Aβ) trials. These MRI findings include vasogenic
edema (ARIA E). micro and macro hemorrhages (ARIA H) and superficial siderosis. FDA has mandated
that patients must frequently be followed by MRI in all AD trials and if ARIA is observed, the patient
should be discontinued and should be followed by MRI more frequently till the finding is resolved or
stabilized. This requirement has put additional burden on both sites and patients who have to undergo
MRI every 3 months. These MRIs have to be evaluated in a standardized fashion with very quick
turnaround time as patient status in the study is dependent on MRI findings. We will present our
experience in conducting MRI evaluations for ARIA and suggest best practices to conduct ARIA
evaluations
Efficacy evaluation: MRI is utilized to evaluate total brain volume or hippocampal volume. FDG PET has
been used to measure metabolic activity of brain. Recently Amyloid imaging agent has been approved
and are being utilized for drug evaluations. Site qualification including phantom imaging, image
standardization and image acquisition is crucial for the success of efficacy evaluations.
In this presentation, we will share our experience regarding issues related to site read, central
independent reads, technology will be discussed and risk management strategies including protocol
development, site selection process, core lab selection and training of the sites and reader management
will be presented.
P7.2. Obtaining and maintaining consent for research participation from patients with
impaired capacity: Best practice recommendations from the MORECare consultation
workshop on ethical issues in palliative care research
Gysels Marjolein, Evans Catherine, Lewis Penney, Speck Peter, Benalia Hamid, Preston Nancy, Grande Gunn,
Short Vicky, Owen-Jones Elly, Todd Chris, Higginson Irene J
Background: There is little guidance on the particular ethical concerns that research raises for people
with dementia.
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Aim: To present the recommendations on obtaining and maintaining consent for research participation
from patients with impaired capacity, and their families, as achieved from a workshop and consensus
exercise on agreed best practice to accommodate ethical issues in research on palliative care.
Design: Consultation workshop using the MORECare Transparent Expert Consultation approach. Prior
to workshops, participants were sent overviews of ethical issues in palliative care. Following the
workshop, nominal group techniques were used to produce candidate recommendations. These were
rated online by participating experts. Descriptive statistics were used to analyse agreement and
consensus. Narrative comments were collated.
Setting/participants: Experts in ethical issues and palliative care research were invited to the Cicely
Saunders Institute in London. They included senior researchers, service providers, commissioners,
researchers, members of ethics committees, and policy makers.
Results: The workshop comprised 28 participants. Five key recommendations on informed consent
were developed. Also seven recommendations were developed on participation in research by a
palliative care population and four on making applications to research ethics committees. The
recommendations on obtaining and maintaining consent from patients and families were the most
contentious. Two recommendations were refined on the basis of the comments from the online
consultation.
Conclusion: The culture surrounding research with patients with impaired capacity needs to change by
fostering collaborative approaches between all those involved in the research process. Changes to the
legal framework governing the research process are required to enhance the ethical conduct of research
with patients with impaired capacity. The recommendations are relevant to all areas of research
involving vulnerable adults.
P7.3. Experience of people with dementia and their carers in a major clinical trial
McCrae Niall, Smythe Analisa, Wright Jan, Douglas Lisa, Newell Helen, Davison Jill, Pearson June,
Chadhamanek Divya, Li Ryan, Poppe Michaela, Nurock Shirley, Murray Joanna, Banerjee Sube
Background: Fundamental to research is free, informed and competent participation, but a
considerable challenge in generating evidence on treatment for people with dementia is the effect of
cognitive impairment on capacity. Consent in clinical trials is covered by the Medicines for Human Use
(Clinical Trials) Regulations (2006), which requires consent at the outset but not ongoing review of
decision-making capacity. In many cases consent is provided by a carer acting as personal legal
representative. However, such carers are often frail and may have limited understanding of the clinical
trial process, despite information provided prior to consent.
Aim: This study explored the understanding and experiences of people with dementia and their carers
in a major multi-centre clinical trial (HTA SADD).
Method: Qualitative interviews were conducted with 14 people with dementia and 24 carers (including
14 dyads) at five trial sites.
Findings: Thematic analysis revealed that while participants were satisfied with their experience of the
trial, limited understanding was apparent in relation to the purpose and process of the trial. Some carers,
as well as most of the people with dementia, had seen the trial as part of normal clinical care, and had
expected that an active treatment was being taken.
Conclusion: While there is a growing need for involvement of people with dementia and their carers in
clinical research, more attention must be paid to informed consent. The authors recommend a revised
approach to consent in people with dementia, taking account of declining cognitive capacity.
P7.4. Considerations when involving people with dementia in research
Borley Gayle, Sixsmith Judith, Church Sarah
Dementia is one of the largest problems facing healthcare services in the future (DoH, 2010). UK Prime
Minister David Cameron has set a dementia challenge to promote the quality of life of people with the
disease (DoH, 2012). Included in this challenge is the clear directive that more research needs to be
undertaken in order to understand how this disease affects individuals. A target has been set to recruit
10% of people living with dementia into high quality research by 2015.
Recruitment into research across all healthcare settings is known to be a challenge, particularly
research into dementia (Abley, 2010). There are multiple reasons why individuals may or may not take
up the opportunity to be involved in research including level of commitment, study duration and
agreement of family members (Marcantonio et al, 2008). Despite investigation of this issue over recent
years, it remains a challenge.
This abstract will explore the challenges involved in recruiting individuals with mild to moderate
dementia into research. It will focus on and discuss issues related to women with Alzheimer’s disease
currently being recruited as part of a doctoral study exploring the lived experience of becoming cared
for.
It will incorporate the importance of recruitment strategies focusing on study design, inclusion/exclusion
criteria, capacity to consent and most importantly the individuality of people with dementia and their
23
families. It will also offer suggestions on how to involve people with dementia in the recruitment phase to
assist with problems concerning finding potential participants and gatekeepers.
P7.5. Development of an easy-to-use videophone for people with dementia
Nygard Louise, Boman Inga-Lill, Lundberg Stefan, Rosenberg Lena
The aim was to develop a design concept and design an easy-to-use videophone with picture screen,
i.e. a videophone, to be used by persons with dementia, and also to introduce this product to pilot cases.
We have used an Inclusive Design approach that includes the target users in the design process.
First, the need of a videophone was examined and a requirement specification and a preliminary design
concept was developed. Thereafter, data from five focus group interviews were analysed with a
Grounded Theory approach. Group 1: Occupational therapists (n=8); Group 2-3: Significant others to
people with dementia, SOs (n=5+5); Group 4-5: Persons with AD (n=2+4). The findings showed that
there were more similarities than differences between the viewpoints of the different samples. The most
evident difference was that significant others wanted to be able to monitor the person with dementia
when they were away from home in order to check that everything was well. The persons with dementia,
however, stated clearly that they did not want to be monitored, and they expressed a strong wish to be
in control.
Our final step in this project was to let users with dementia and their significant others (SOs) test the
usability of the video telephone design concept. We constructed a mock-up of the design concept, and
invited users (4 persons with dementia and 4 SOs) to test it in the living lab at The Royal School of
Technology in Stockholm. The participants were asked to carry out three different tasks; first, to make a
videophone call to their SO in the room next-by, secondly, to answer a videophone call from their
significant other, and thirdly, to make a call to SOS (although the mock-up was not connected to SOS).
The participants with dementia perceived that it was useful, enjoyable and easy to use although they
initially had difficulties to understand how to handle some functions, which indicates that the design
needs to be further developed to be more intuitive.
Conclusions: The findings suggest that the videophone has potential to enable telephone calls without
assistance and add quality in communication.
P8. Dementia friendly communities (Friday, 11 October, 16.00–17.30, Vilhena)
P8.1. Connecting people living with dementia to nature: A celebration of woodland
Mapes Neil
Dementia Adventure and the Woodland trust are working in partnership to enable more people living
with dementia to benefit from visiting woods. We are pleased to share the film ‘A Celebration of
Woodland’ which is the product of a day which was made possible by the Woodland Trust Scotland's
VisitWoods team. The day took place on the 24th July 2012 at Lochore Meadows in Fife, Scotland which
is a beautiful natural setting with a park and woodland around a loch with very good disabled access
facilities created on the site of a disused coal mine. The day, led by Dementia Adventure, involved 77
people coming together from all over the central belt of Scotland to enjoy a beautiful day of outdoor
activity and fresh air. The community enjoying the day included people living with dementia from:
Alzheimer’s Scotland Facing Dementia Together group, Scottish Dementia Working Group as well as
residents, staff and family members from 11 care homes locally as well as staff and volunteers from
Dementia Adventure and the Woodland Trust Scotland. There were various nature based activities and
crafts on offer, people shared picnic lunches as well as tea and coffee served by volunteers. The film
we would like to showcase was made by Edinburgh film makers Muckle Hen Productions, who
volunteered their time to support this work. We are pleased to share this film which demonstrates the
benefits and importance of nature and of woodland to people living with dementia. This successful
partnership also shows how organisations can work across sectors in creative and engaging ways for
mutual benefit in creating Dementia Friendly communities, communities where people living with
dementia enjoy the outdoors.
P8.2. ACT on Alzheimer’s: A unique toolkit available to all communities to foster dementia
capability
Mastry Olivia, McKinley Deb
ACT on Alzheimer’s is a statewide collaboration in Minnesota, USA, seeking to prepare and build
capacity in Minnesota communities to address the spiraling needs related to the increasing prevalence
of Alzheimer’s disease and related dementias.
Using a unique collaborative model that involves over 50 non-profit, governmental and for-profit
organizations and 150 individuals, ACT on Alzheimer’s is focused on five goals:

Identify and invest in promising approaches that reduce costs and improve care;

Increase detection of the disease and improve ongoing care;

Sustain caregivers by offering them information, resources and in-person support;
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
Equip communities to support their residents who are touched by the disease; and

Raise awareness and reduce stigma by engaging communities in planning for and integrating
Alzheimer’s resources that foster early detection, quality care and support and community
readiness.
As part of goals four and five above, ACT on Alzheimer’s has developed a Community Toolkit to foster
dementia capability and friendliness, which can be used in communities of any size, geography or
interest.
The toolkit guides users through a research-informed, four-phase process that fosters community
readiness, engagement, collective action and measurement to develop dementia capable and friendly
communities. The four phases include:
1. Convening key community leaders and members to understand the disease and its implications for
communities and then bring together an Action Team.
2. Assessing current strengths and gaps in meeting the needs that result from Alzheimer’s disease
and related dementias, using a comprehensive community assessment toolkit that gauges
availability of dementia best practice supports and resources based upon existing and emerging
evidence.
3. Analyzing community needs using a unique synthesizing to identify and prioritize which issues
stakeholders are motivated to act on to set community goals.
4. Acting together to establish implementation plans to achieve priority goals and measure progress.
Each phase contains necessary action steps, resources, timeframes and best practices to support
communities through the phase. After implementing the Toolkit, a community will have prioritized and
acted on one or more needed change efforts to enhance dementia capability and friendliness.
Communities are free to make their own choices about which goals to pursue. Once they do so, they
can access a library of best-practice, how-to resources to implement change.
The Toolkit process strengthens communities, improves overall services, supports caregivers and
prepares health care professionals, clergy, service staff, and others who want to know how to best
support individuals touched by Alzheimer's. The Toolkit is currently being piloted in five communities in
Minnesota. Two of the communities are in metropolitan areas, two in rural areas and one is a
community of interest (faith community).
The presenters will present:

A brief overview of the comprehensive collaboration;

Each phase of the Toolkit and the overall research basis for the four phase approach;

Instruction on how to use the Toolkit in any community. See http://actonalz.org/communitiesact;

Case studies to show how the Toolkit is being implemented in distinct pilot communities;

An overview of technical assistance and resources available to communities that choose to
implement the Toolkit; and

Discuss evaluation and progress of the pilot communities.
P8.3. Connected Compassionate Communities “Something to believe in” – the embodiment
of life affirming energy and hope for the future
Naidoo Marian and Shaun
This presentation will focus on research undertaken across Birmingham and Solihull that began in 2012
and was commissioned by the Birmingham and Solihull Combined Commissioning Group. Its purpose
was to include people living with Dementia and their families and carers in the development of a new
strategy for frail older people. The process embraced and reflected the lived experience and needs of a
culturally diverse community.
The researchers used a process of Living Theory Action Research (LTAR) with a particular emphasis on
developing relationships and gathering narrative using digital media where appropriate. The research
explored, through the gathering of stakeholders narrative, their experience of living with Dementia or
caring for someone living with Dementia and the fundamental issues for them in maintaining levels of
health and wellbeing while aging creatively.
LTAR was employed as a methodology as it was believed that it would enable ownership of the process
by the participants involved in providing improved services. LTAR always starts with participants asking
themselves the question “How do I improve what I do?”
Developing trusting relationships played a significant role when working with community members. This
was particularly important in relation to minority ethnic communities that many service providers had
previously found difficult to reach and engage with. As researchers, the development of an authentic
relationship as part of the LTAR methodology used was crucial. Finding a way to ensure that voices
were heard became both a creative task for the researchers and an integral part of the action research
process itself. Digital media as a feature of this research work ensured that narratives were recorded
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allowing evidence for themes to emerge. The significance of this locally and culturally provided a
powerful platform for the creation of a complex picture of community/ies in all their diversity and allowed
further work to be developed.
Bringing narratives to the table with service users, carers, providers and artists as part of the process
has raised awareness with key providers of the importance of creative engagement being built in to
service provision as part and parcel of the redesign process. More importantly it has produced
qualitative data that has gone on to inform the development of a much more localised dementia strategy
in the drive to encourage more dementia friendly communities.
By working together and sharing experience and learning, Connected Compassionate Communities has
enabled levels of involvement and in particular from the BME communities that has been historically
unprecedented. The focus on building trust through fluid communication and relationship building has
enabled many individuals to disclose some very pertinent issues. This programme is about learning
together to bring about transformational change by connecting communities of people together in the
development of a community of practice based on the need to develop an inclusional and responsive
frail elderly pathway. It is not about creating “add on” training of staff or “bolt on” of new protocols. It is
important for the flourishing of these communities in the future that we enable the narratives of people
living with dementia, their carers and family members to tell a story of improvement. We can help to
achieve this by ensuring that provision within communities is really locality based and reflects the social
and cultural makeup of the communities it serves.
P8.4. “I’d like a dementia-friendly world, but I’ll start with my local community”
Malone Brian
What is a dementia-friendly community from the point of view of a person of dementia and how does
that compare with the professionals’ view?
The Scottish Dementia Working Group is a campaigning and awareness-raising group whose members
all have a diagnosis of dementia.
Brian Malone, a new member of the group, will give an oral presentation to highlight the work being
done both locally and nationally across Scotland to encourage communities to become dementia
friendly. He will explore how these community initiatives have a positive impact on the way we live our
life day-to-day lives. The presentation will explore the question “who decides what a dementia-friendly
community is?”, and discuss the importance of involving people with dementia in designing and building
communities which are truly dementia friendly.
P8.5. Dementia friendly parishes around the Yealm
Sherriff Ian, Phillips Helen
Dementia Friendly Parishes around the Yealm is a fully constituted project group with its own
constitution and bank account. It has been set up by interested and motivated people from the local
community who are committed to improve and change the lives of people with dementia and their carers
across 5 parishes on the estuary of the River Yealm.
This innovative two year project will employ a Coordinator in the Parishes of Brixton, Yealmpton,
Wembury, Newton and Noss and Holbeton to develop Dementia Friendly Parishes around the River
Yealm by engaging with people with dementia, their carers and families, together with voluntary and
statutory services, businesses and the wider community.
The key aims of Dementia Friendly Parishes around the Yealm are to

promote individual and community based activities and services for people with dementia,
their carers and families across the parishes of Wembury, Brixton, Yealmpton , Newton &
Noss and Holbeton ;

ensure that people with dementia, their carers and families have a voice and are able to
maintain and, where necessary, increase their social contacts within their local community;

develop or contribute to the development of suitable inclusive social activities and services
locally for people with dementia and their carers;

work in collaboration with local groups and organisations;

ensure people with dementia and their carers have access to all community activities.
The project will benefit the whole community in each parish as awareness is raised with local
organisations, businesses and services. It will empower people with dementia and their carers to remain
in their own community with support to reduce unnecessary and disruptive admissions to hospital, or
unplanned respite and emergency call outs.
The purpose of the job of the Project Coordinator will be to influence, change and promote socially
inclusive communities for people with dementia, their carers and families across the parishes of
Wembury, Brixton, Yealmpton, Newton & Noss and Holbeton and to ensure that people with dementia,
their carers and families are able to maintain and, where necessary, increase their social contacts within
their local community. The Coordinator will promote dementia awareness across the Parishes
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particularly with the Parish Councils, Health Centres, NFU, faith groups, transport services, local
businesses and other organisations e.g. shops, pubs, Post Offices, hairdressers, garden centres, clubs,
WI, etc. The post holder will provide advice and guidance to people with dementia and their carers so
that they can continue to maintain and where necessary increase their social contacts within their local
community.
A person has been recruited to this part time post of 18.5 hours per week. The budget for this project is
£40,000.00 for the 2 years. This includes the salary and all on costs e.g. tax, NI etc plus travel, and
other administrative costs e.g. provision of mobile phone and laptop.
The group is in partnership with South Devon Carers Consortium who will be acting as the host
employer providing support for payroll and tax, as well as human resources and operational policies.
This project is being supported by Devon County Council, County Councillor John Hart – Leader,
Devon County Council, District Councillor John Squire - South Hams District Council, Saltram Rotary,
the Parish Councils, Brixton Feoffee Trust, South Hams TAP Fund and Newton & Noss Ladies Golf
Group.
We have a formally constituted Management Committee, chaired by Roger Monson representing
Saltram Rotary, with representatives of local key voluntary and community organisations providing
advice and information e.g. South Hams CVS, Devon Senior Voice, Alzheimer’s Society, Plymouth
University, Carers, and Advocacy Services and the host employer South Devon Carers Consortium. The
Committee draws on member’s professional experience and skills in health visiting, social work,
occupational therapy, management, dementia and community work. We are in the process of recruiting
a person with dementia and their carer onto the Management Committee.
Arrangements have been made for the project to be evaluated by Plymouth University.
This project meets with one of the three main aims of National Dementia Strategy 2009 - Living well with
dementia and the Prime Ministers National Challenge on Dementia 2012 -2015, Dementia 2012 – A
National Challenge. Currently 1 in 3 people over the age of 65 is projected to have a dementia in later
life and increasingly younger people around the age of 40 are being diagnosed with a dementia. Devon
has particularly high figures for dementia based on the number of older people in the general population
so it is important that for the future local communities can support people with dementia and their carers.
Furthermore the National Dementia Declaration identifies desired outcomes for people with dementia
and their carers based on research by the Alzheimer’s Society published in 2012 which include

I live in an enabling environment and where I feel valued and understood

I have a sense of belonging and valued part of a family, community and civic
It is anticipated that this work will change the culture and resilience of our communities to enable them
to be sustainable and continue to meet the changing social needs of people with dementia in the long
term, as the numbers are projected to increase considerably in this area of Devon.
P8.6. The lived experience of the neighbourhood for carers of people with dementia
Ward Richard, Clark Andrew
This paper will report on a qualitatively-led study of the relationship that carers of people with dementia
have with their neighbourhood. Using a mix of methods to consider the dynamic relationship of the
neighbourhood as a physical space and as a social space the research explored the changing nature of
place and space over time for a group of carers and ex-carers in the North West of England. The
research reflects a growing interest in the notion of ‘dementia-friendly communities’ in both policy and
practice. However, in a context to date where much research has prioritized either the physical
properties of the local environment or the social networks in which people with dementia and their carers
are embedded we argue for the importance of considering the relationship between these different
dimensions of place in the formation of notions of what constitutes dementia-friendly environments. In
particular our focus has been upon how carers experience their neighbourhood; the role it plays in their
everyday lives; and the shifting meanings of home and local spaces in the context of living with and
caring for a person with dementia. Our findings suggest the need to consider place and space over time
and we draw in particular upon notions of place as a ‘spatio-temporal event’ (Massey, 2005) in order to
underline the fluid and changing relationship to the local environment that people experience in the
context of living with dementia. Such insights have important implications for how we conceptualise
‘dementia-friendly communities’ and underline the value of using a creative mix of methods to better
understand the multi-faceted nature of the neighbourhood.
P9. Dementia and the arts (Friday, 11 October, 16.00–17.30, Verdala)
P9.1. A visual exploration of the dementia experience: Uncovering multiple meanings of
well-being
Ataie Jutta E.
27
Although it is widely acknowledged that a person’s sense of well-being is impacted by the onset of
dementia, there is scant knowledge about what ‘feeling well’ means for people with the illness. However,
having an understanding of what well-being means for people with dementia is important as it is a
necessary precursor for developing interventions and support services that foster a sense of well-being
in this population.
In the present study, visual and verbal narratives of thirteen women and seven men with early-stage
dementia (age 57-90, mean 73.4; MMSE scores 20-28, mean 25.6) were used to explore what ‘feeling
well’ means. Grounded theory analysis revealed that ‘feeling well’ was not a static experience; it was an
ongoing, continually shifting process that unfolded in a series of interrelated phases. The participants
initially experienced a collapse of their familiar sense of well-being, then endured a period of ill-being,
which gradually subsided as they found ways to feel well again. Finding ways to feel well again meant to
discover the strength and resources necessary to redefine, rebuild, and maintain an alternative sense of
well-being.
In this cyclical and continuous process the participants’ attention to the illness fluctuated as they were
impelled to relegate the illness to the background of their lives while managing its symptoms in the
foreground. At times, they focused on well-being (with the illness in the background); at other times, they
focused on the illness (with well-being in the background). In other words, they attended to the demands
of the illness while striving to carry out what was possible in their lives. Feeling well, as a whole, meant
for the participants to find richness in the details of their daily doings and cherish the interconnection
between their lives and the lives of others. As time progressed and the participants grew accustomed to
this new, alternative sense of well-being, it became their familiar sense of well-being. However, the
delicate balance of ‘ill-being’ and ‘well-being’ was easily disturbed. The process of defining and
constructing an alternative sense of well-being repeated itself when increasing symptoms propelled the
illness back into the foreground of the participants’ lives and made it impossible for them to maintain the
familiar sense of well-being at that time.
The findings of this study give credence to emerging efforts to create holistic, person-in-environment
approaches to clinical practice that incorporate available support systems and aspects of a person’s
lifestyle, emotional needs, and spiritual preferences. Possible avenues for healthcare professionals to
enhance the ability of people with early-stage dementia to experience a sense of well-being while living
with the illness will be discussed. Further research is required to investigate if, and if so how, the
meaning of well-being changes as the illness progresses.
P9.2. Aesthetic emotions in people with dementia: Making museum art accessible to people
with dementia
Ragni Silvia, Attaianese Fulvia, Boccardo Mauro, Levi Stephanie, Bartorelli Luisa
Introduction: Exposure to art can open up new channels of communication for people with dementia.
Contact with art creates a path through cognitive and behavioural problems that result from the disease,
going to the very root of being, where there is still the capacity to be moved by beauty in all its forms.
Based on this philosophy, the Alzheimer Day Center of the Fondazione Roma organizes guided visits
for its participants to museums and exhibitions, following an established protocol. Volunteers of
Alzheimer Uniti participate actively in the sessions.
Purpose: Based on this premise, the project aims to evaluate the benefits of an intervention in which
people with dementia observe and talk about works of art in a museum setting, led by trained guides.
Specific objectives are: the recovery of autobiographical memory and expressive ability, leading to
improved self-esteem; the improvement of mood through rewarding experiences; socialization as a
means to promoting a friendly community in which the caregiver also participates. Another objective is
the strengthening of the relationship between the person with dementia and the health care workers
through the experience of sharing emotions.
Material and Method: A group of 12 people, in a mild to moderate stage of dementia, accompanied by
a multi-professional team and volunteers, goes to an art museum to see works of art which have been
previously selected. This past year, the group went to two museums: two visits to the Museum of Rome
(for two separate exhibits: “The Renaissance” and “Akbar”) and five visits to the National Gallery of
Modern Art (to the permanent collection). The visits last two hours and are led by a museum-trained
expert who engages the participants in a conversation about the works of art. The protocol then
includes: a follow-up two hour meeting at the Alzheimer Day Center a week after the museum visit,
when the same museum expert shows slides, recalling the work of art and the related discussion. Then
after another two weeks, the group repeats this at the Day Center but this time only with the personnel
from the Center. During each meeting, an observation grid is filled in for each participant, with notes
about verbalization and other behavioural aspects. The protocol also includes a semi-structured
interview of family members, administered after each cycle to assess the impact at home.
Results and Conclusions: An evaluation of the results, through analysis of the observation grids and
the interviews with family members, shows that contact with beauty and exposure to art is inspiring and
leads to reactivation for people with dementia. The work with art touches their emotional circuits, which
are not destroyed by the disease. It also stimulates cognitive aspects by bringing out autobiographical
memories and reinforces their relationship with the outside world. In addition the participants
28
spontaneously give their critical opinions about the works of art, both positive and negative, normally
unthinkable in people with dementia. It is evident that this creates good feeling between the participants,
the health workers and family members. Our observations are increasingly supported by studies in
neuroscience around the world.
P9.3. How photography, blogging and the arts helped a person with dementia accept his
diagnosis
Pascoe Ann
To show how photography, blogging and the arts, helped a person with dementia living in the rural
Highlands of Scotland - after 6 years of denial - to finally accept his diagnosis.
To explain how his photography transformed his dementia world into one that has not only helped him
accept his dementia diagnosis, but also given him a sense of well-being celebrating the things he can do
rather than what he cannot do.
How he used his photography and art as a basis to:

blog and tell the true ‘inside story’, giving much enjoyment to others

help children with learning disabilities overcome their sense of inadequacy

paint and move from a ‘dark’ to a ‘light’ place,

create different forms of art as his imagination and creativity were stimulated

raise monies for charity
Samples of his photography and art will be examined to demonstrate how by opening these new ways
of looking at things, his photography and art provided a potent connection between his inner and outer
worlds, resulting in a voyage of self-discovery and personal growth. And that by coming to terms with
this, he not only reached a profound appreciation of his own worth, but was also free to let go of
negative feelings and accept his diagnosis.
P9.4. Alzheimer’s disease and artistic mediation workshops
Mollard Judith
France Alzheimer has always worked on non-drug therapies and supports all kinds of activities for
people with dementia. France Alzheimer wants to improve people’s quality of life and that’s why 97
associations in France are working every day helping and caring for people.
Through this network, France Alzheimer has focused on the development of artistic mediation
workshops suitable for people with dementia.
Alzheimer's disease affects cognitive skills and abilities such as reasoning, logic, abstract thinking, etc…
But, it does not affect the ability to feel and to express feelings. Most of the time, all five senses of
people with dementia continue to work, making artistic mediation such as music, painting, theater,
dance and photography very stimulating..
Through this activity the caregiver meets people with dementia in another way, art fostering selfexpression, emotional connection, sharing and understanding.
For the moment, there is no study measuring the scientific value and the therapeutic impact of this
activity.
However, in caregivers’ experience, these activities are a successful means to help people with
dementia to maintain their identity and self-esteem. These artistic activities focus on the person, not on
the disease: art is an alibi to create a relationship between the people with dementia and others.
There is no point in to interpreting the results, or learning savoir-faire. We aim at sharing pleasure
though creative activities. Desire and self-esteem are stimulated also.
2013 France Alzheimer objectives:

Evaluating the artistic mediation workshops developed by the 97 associations throughout
France. The objective is to identify the benefits, the quality of the caregiving and assess
participating artists.

Collaborating with the artists on a teamwork book including texts, photos, stories, and
specialists’ interviews. The objective is to promote artistic mediation workshops, for all people
with dementia from the outset of the disease.
P9.5. (Don’t) Mention Dementia – groundbreaking engagement work in the UK
Eland Derek, Innes Anthea, Cutler Clare, Hambidge Sarah
Public perceptions of dementia are often based on negative impressions and stigmatizing views about
what dementia is and what living with dementia might be like. This innovative arts project uses a unique
public engagement process to collect honest and raw accounts of these impressions and views. The
aims of the project are to contribute to a fundamental change in public perceptions about dementia as
well as give an alternative way to give voice to those with dementia.
29
This public engagement project collected both the views of the general public and those living with
dementia using a ‘diary room’ technique. People with dementia and members of the general public
were asked to provide a handwritten story of their experiences/views on a postcard. In a digital age and
in the content of dementia there is nothing more powerful than the handwritten account. Over a period
of 12 weeks Bournemouth University Dementia Institute staff and volunteer students worked with people
with dementia and the general public to collect these stories. Stakeholder support was key to the
success of this project, either at the national level through the Alzheimer’s Society and Age UK as well
as stakeholders at a local level. This enabled the project to have access to a wide range of groups of
people with dementia.
Hundreds of handwritten stories from people with dementia and members of the public were collected
during the engagement phase. As well as collecting written stories about peoples’ views about
dementia we took digital images of the people who wrote their stories to demonstrate that visually it is
not always possible to actually know who has dementia.
The stories and images were exhibited for the first time in the UK June 2013 and the reaction and
comments of members of the public who viewed the work were also collected. Hundreds of people
wrote about their response to the exhibition, also on a postcard.
The work and resulting exhibition has attracted huge attention because of the power of the work and the
uniqueness of the approach. It is exhibited here for this conference to view. Please also take a
postcard and write your response to the exhibition. The approach, which is a collaboration between
Bournemouth University and artist Derek Eland, provides the basis for a wider roll out to other parts of
the UK and beyond. This approach offers a way to challenge and change perceptions of dementia.
P9.6. «Awakened Art Stories» – rediscovering art with dementia
Oppikofer Sandra, Wilkening Karin, Angst Silvia
Background: «Awakened Art Stories» is an intervention project of the University of Zurich in
cooperation with the Alzheimer Association of the Canton of Zurich et al. It animates persons with
dementia to invent creative stories based on open-ended questions about bizarre photographies and
various paintings at the Kunsthaus museum in Zurich by using the TimeSlips storytelling-method of
Anne Bastings. The group-setting as well as the possibility to encourage a creative process without
knowledge of the individual biography are particular to this method.
Objectives: Thanks to the regular museum visits and creative storytelling process, an intellectual
stimulation and social interaction takes place in an accepting environment. This offers persons with
dementia as well as their caregivers the possibility to share positive experiences. Remaining skills and
competencies of the diseased person are furthered, creative potential and the joy of doing something
oneself are supported. The invented stories as well as the pictures are taken home as a topic for further
communication between the caregivers and the person with dementia.
Procedure: In spring and autumn 2013,16 creative storytelling sessions will be held at the Kunsthaus
Zurich. Participants are people with dementia either living at home with their family members or living in
care facilities with a medium to advanced cognitive impairment. Each session concludes with a
sponsored leisurely aperitif and a social get-together for all participants.
Evaluation Methods: The satisfaction with the program will be tested with a semi-structured
questionnaire in May/June 2013. All participants will be included in the survey.
The effectiveness of the program will be tested in a longitudinal study involving all caregiver-patient
dyads as well as the volunteer workers in 2013/2014.
Evaluation Results: Results of the satisfaction-survey will be on hand in October and presented at the
congress.
Preliminary results of the effectiveness of the whole program will be presented at the congress.
P10. Interdem (Friday, 11 October, 16.00–17.30, Pinto)
P11. Carer training (Saturday, 12 October, 08.30-10.00, Perellos)
P11.1. Development and evaluation of the European STAR training portal: Skilling and reskilling carers of people with dementia
Dröes Rose-Marie, van der Roest Henriëtte G., Bengtsson Johan E. 3, Giuliano Angele, Hrin Silvia, Kevern
Peter, Kingston Paul, Hattink Bart, Abiuso Francesca, Nugent Chris, Meiland Franka J.M.
Background and objectives: Due to the expected doubling of the number of people with dementia in
the coming decades coupled with a rapid decline in the numbers of those in the working population
during the same period, much less professionals will be available to provide care to people with
dementia. The task of caring will therefore be conducted by millions of untrained informal carers and
volunteers. In order to care effectively for people with dementia, avoid carer overburden and prevent
premature admission to long term care settings, carers must become properly skilled. In the European
30
STAR project dementia, educational and technological experts in six countries (The Netherlands,
Sweden, Italy, Malta, Romania and UK) are working together to create and evaluate a European
multilingual e-learning tool for dementia care referred to as the STAR training portal.
Methods: Sample, design: The STAR training portal is evaluated among informal carers, volunteers and
professional carers: in the Netherlands and the UK by a randomised controlled trial (n e+c=140 in total), in
which carers are assigned to the experimental or control group by lot, and in Italy and Sweden by using
a one group pretest-posttest design (n=15 per country). Assessments are performed with online
standardised questionnaires, at baseline, i.e. in the experimental group before starting the training, and
after four months.
Intervention: During a period of 4 months the experimental group has access to the STAR training
portal, consisting of eight modules: the first two have a basic level, and six additional modules have an
intermediate and advanced level of which the last is primarily targeted for professional carers. They also
have access to online peer and expert communities for support and exchange of information. Subjects
in the control group have access to public informative websites and materials as usual, however, do not
have access to the STAR training portal.
Measurements: The main outcome measures are 1) user friendliness, 2) usefulness and 3) the impact
of the course on the knowledge, attitudes and approaches of carers regarding dementia (primary
outcome measures), and also empathy, quality of life, burden and sense of competence of carers
(secondary outcome measures).
Results: The developed STAR training portal provides education on dementia, the disease course, the
importance of obtaining a diagnosis, dealing with the practical, social and emotional consequences of
dementia in daily life, support and communication strategies, and the emotional impact on the carer.
Personalised learning paths, textual information, footage, links, reading material and tests are presented
to the carers. Preliminary results on how carers evaluate the STAR training portal and its impact will be
presented at the conference.
Conclusion: Preliminary conclusions are drawn on the user friendliness and usefulness of the STAR
training in addition to its impact on informal and professional carers. The STAR project started in
December 2010 and will end in December 2013.
The STAR project has been funded with support from the Lifelong Learning Programme of the European
Commission. This publication reflects the views of the authors only.
P11.2. Care provision for people with dementia in Maltese hospital wards: paradoxes
between hospital staff perceptions and observational and audit data
Kelly Fiona, Innes Anthea, Scerri Charles, Abela Stephen
Many people with dementia will find themselves living for periods of time in hospital wards either for
treatment of co-morbidities, for assessment purposes or when alternative care arrangements cannot be
easily found. The experiences of hospital care for those with dementia has attracted media and policy
attention, with increasing recognition that being in hospital can be detrimental for people with dementia.
This paper discusses the findings of a study evaluating hospital care provision for those with dementia
living in two hospital wards in Malta.
The physical environment, the psychosocial care delivery experienced by people with dementia and the
views of staff working on the wards were examined using established and validated tools.
The findings highlight a range of care paradoxes. The first is that the physical environment of the
hospital wards does not align to the current evidence-based recommendations for good dementia care
environments. The second is that the care experienced on the wards was largely ‘non-care’ in the sense
that minimal care was actually observed or delivered. The third is that staff working on the wards ranked
the setting more positively than the other data collection methods revealed. Our findings also suggest
that staff had low expectations of care for those with dementia and low awareness of established care
norms and expectations.
In line with National dementia strategies, these findings highlight the need for increased staff
development, mentoring and education to raise awareness of how to improve both the physical and
psychosocial care environments while exemplifying that small initiatives, if routinely adopted, could
contribute to an improved experience for those with dementia living in hospital wards.
P11.3. The nurses’ attitudes towards care of residents with dementia
Grima Daniel, Scerri Josianne
Due to improvements in health services and technological advances more individuals are living to an
older age. In Malta, at present about 14% of the population are over sixty five years. Although dementia
is not part of the aging process one of the major health issues problems related to old age is the
increase in prevalence of dementia. In contrast there is a relative dearth in literature which deals
specifically with nurses attitudes to these patients. This issue is of importance as attitudes are linked to
behaviour and may influence the quality of interaction between the nurse as a professional and the
person with dementia. The aim of the present study is to investigate nurses’ attitudes regarding the care
of patients with dementia. The objectives included determining whether caring for such a patient is a
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positive and a meaningful experience for themselves; whether such care should be provided at home or
in a geriatric institution and whether nurses’ attitudes vary significantly by age and gender.
An exploratory inferential cross-sectional research design was used. Data on nurses’ attitudes on care
of persons with dementia were collected by means of a questionnaire constructed by Astrom (1986).
The tool was distributed to sixty nurses working in geriatric wards. Fifty six questionnaires were
returned, giving a response rate of 93.3%.
The majority of nurses (91.1%) perceived that they have positive attitudes but would prefer not to have
these patients in their wards. This could arise as most respondents (82.1%) perceived patients with
dementia as aggressive, difficult to communicate and emotionally connect with. Additionally caring for
these patients was not considered a high status job. The participants in general felt that persons with
dementia should not be cared for at home and that relatives should be given the opportunity to be
involved in their nursing care. A significant difference in nurses attitudes was obtained by gender (F =
5.93, p = 0.04) and age (F = 10.48, p = 0.04) with younger participants (21 – 30 years of age) and male
nurses perceiving that it is just as meaningful to work in a residential aged care facility, as in an acute
care facility.
The study has demonstrated that there is a need for nurses working with persons having dementia to be
more knowledgeable about the condition as well as on therapies and skills required to provide optimal
holistic care. There is also a need for nurses specialized in dementia care who could also be a source of
motivation and information for their colleagues to enable them to improve on their practice. When
planning in service courses for nurses a consideration of differences in attitudes by gender and age
should be considered.
P11.4. Into D’mentia: Development & evaluation of a virtual-reality experience of dementia
Hattink Bart, Meiland Franka, Campman Carlijn, Sitskoorn Margriet, Rietsema Jan, Dröes Rose-Marie
Objectives: Research by the Dutch Alzheimer Association showed that 82% of the informal carers of
people with dementia are at risk of overburdening 18% of them feels severely burdened. Also
professional carers experience stress and report difficulties in dealing with persons with dementia. The
aim of the Into D’mentia project was to develop and evaluate a dementia simulator and training to
promote the understanding and awareness of the experience of people with dementia; thereby aiming to
reduce carer burden and promoting more empathetic care.
Methods: Development: First the literature was reviewed on citations of people with dementia on how
they experience their dementia. These citations were categorized in themes (adaptation aspects,
problem areas, quality of life domains), which were discussed in separate focus groups with persons
with dementia and informal carers to know if they recognised these experiences and how it influenced
their lives. Additionally, in a survey dementia experts were asked to rate the frequency of the occurrence
of the mentioned experiences as well as to appraise the impact of the inventoried problems on the daily
lives of people with dementia. All these results were input for the development of a scenario for the Into
D’mentia simulator. A first prototype was tested on user friendliness and usefulness among informal
carers and dementia experts, which helped fine-tuning the development of the simulator. Parallel to this
development a short training was developed on dealing with the functional and psychosocial
consequences of dementia.
Evaluation research: In a one-group pretest-posttest design study (in)formal caregivers were interviewed
three times: before the intervention, immediately after the intervention and two months later. Outcome
measures were: user friendliness and usefulness of the simulator, and (among informal carers) impact
of the Into D’mentia experience on coping, feelings of empathy and feelings of competence and (among
professional carers) impact on feelings of empathy, approaches to dementia, emotion-oriented care and
work satisfaction.
Results: The developed Into D’mentia intervention consists of a simulator in a mobile container using
virtual reality and serious gaming techniques, by means of which participants experience the impact of
dementia in daily life situations. Besides the simulator, one week later participants are offered a short
group training (half a day). The procedure is as follows: After a short introduction on Into D’mentia,
people enter the simulator (20 minutes); after the simulation they are interviewed on their experiences
(debriefing); one week later during the group training the participants experiences are discussed in small
(5 to 10 persons) groups and additional information on dementia and how to deal with the
consequences is provided.
35 (In)formal carers participated in the evaluation study. Informal carers were positive on Into D’mentia:
9 out of 10 informal carers indicated that it gave them ‘more insight’. They mentioned that ‘it’s an eyeopener, it shows you how people see you and how you communicate’. 24 out of 25 professional carers
agreed that they could ‘use knowledge from Into D’mentia in their daily practice’. They indicated, for
example, that after their Into D’mentia experience they looked at people differently, they were better in
understanding how people with dementia experience situations as if they are new to them. 21 out of 25
professionals also considered Into D’mentia to be ‘very educational’. Furthermore, they mentioned that
the Into D’mentia experience made them ‘much more aware’ and a professional said ‘though I knew
much already, it made me more aware of it’. The results regarding the evaluation of the impact of Into
D’mentia will also be presented at the conference.
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Conclusion: A mobile Into D’mentia intervention was developed in which informal carers and
professional carers can experience what it is like to have dementia and how it impacts the life of a
person with dementia. User friendliness and usefulness are positively evaluated by informal and
professional carers. Final analysis of how Into D’mentia impacts the sense of competence of informal
carers, work satisfaction of professional carers and whether it promotes empathetic care will be
presented at the conference.
P11.5. Putting the Positives into Caring: A Workshop Designed by Carers for Carers
Brown Caroline
Caring for a person with dementia is unique and can be an isolating, intensive, challenging, stressful,
and rewarding experience. Caring for parents, who both have dementia; I am only too well aware of the
impact on my wellbeing, my ability to continue caring and the risk of carer burnout. The stress of caring
for someone with dementia is well documented, and can have an impact on the emotional, physical,
financial and spiritual wellbeing of carers, all of which may have a profound impact on the relationship
between the carer and the person with dementia. This relationship is crucial to creating an environment
in which the wellbeing of both carers and people with dementia can flourish.
Supported by Alzheimer Scotland John Killock, writer and communicator, and Caroline Brown, carer, life
coach, and member of Alzheimer Scotland’s National Dementia Carers Action Network, worked in
partnership to develop and deliver workshops, for carers. The aim of the workshops was to put the
positives back into caring. Building on their own, combined 28 years experience, and that of other
carers; Caroline and John designed the workshops to provide a safe and supportive environment for
carers of people with dementia to share experiences, listen to others and to learn techniques and tips to
help them restore the balance. The workshops used creative techniques including unique video
resources as learning tools to achieve its aim.
This presentation will demonstrate how the creative techniques used in the workshops are effective at
improving how participants viewed their caring role by putting the positive back into caring. The
presentation will firstly, describe how the workshops were designed and the tools and techniques used,
including a short video clip. Secondly, the presentation will draw on the feedback from carers who
participated in the workshops to identify the key areas of learning. Thirdly, the presentation considers
the next steps in further developing and improving the reach of such workshops.
P11.6. Logotherapeutic approach enhances the skills of professional carers
Heimonen Sirkkaliisa
Logotherapeutic approach has been applied in dementia care in Finland for several years. This
approach underlines human dignity and uniqueness of a person, resources, possibilities and meaning in
life. At the Age Institute logotherapeutic approach is disseminated in dementia care mainly by education.
‘The Journey of Possibilities’ training is being provided as a part of the ‘Meaning in Old Age’ project
(2011-2014). The course contains ten seminars (in ten months) and between the seminars the
participants do tasks, which apply the theory into practice. All participants carry out a development
project in their own care unit.
The main themes of the course are the principles of logotherapeutic approach in dementia care, the
ways to support human dignity and uniqueness of a person with dementia, the central role of
encountering in care and meaningful life. The education focuses on the meaning of choices and acts
done by carers in daily care situations. The participants have evaluated that as a result of this education
they have learned better to see the value of meaningful life for a person with dementia. They recognize
better the meanings in moments and their ability to identify possibilities, resources and hope has
developed. The participants recognize more deeply the importance of their own actions and choices for
the well-being of a person with dementia.
From the basis of experiences and evaluations, a model of education by which logotherapeutic
approach is being disseminated in dementia care is constructed. In the future, this type of education for
professional carers is needed in order to enhance the quality in dementia care.
P12. Preventing carer burnout (Saturday, 12 October, 08.30-10.00, Wignacourt)
P12.1. Alzheimer holiday in Austria
Auer Stefanie, Span Edith, Zehetner Felicitas
Introduction: Prolonged caregiving is an exhausting task and can result in the development of
depression and other serious health problems. Phases for recovery are a necessity and not a luxury.
However, accepting respite is a learning process for many caregivers. Traditional respite programs
require a separation between caregiver and PwD and may therefore not support this learning process
because of the caregiver’s worries about the PwD. We developed a respite program, the “Alzheimer
holiday” in which both, the caregiver and the PwD can enjoy their break from daily routine. Effects of this
program were assessed.
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Methods: This two week program is provided in a holiday region of Upper Austria, in Bad Ischl. In order
to promote a close to life setting, persons live in a hotel and all program activities are provided there as
well. While the PwD receives stage specific stimulation and supportive training twice a day (morning and
afternoon), caregivers receive information about the disease, are trained in special communication
techniques and receive group and individual counseling. Social activities and trips to nearby attractions
and taking daily walks are additional program points. The effect of the program on PwD’s functioning,
cognition and behavior as well as on caregiver burden and depressive symptoms were assessed in a
single group pre-post design.
Results: 104 patient-caregiver dyads (GDS levels 4-6) took part in the study. PwD’s cognition, as
measured by the MMSE, concentration, as measured by the Brief cognitive Rating Scale (BCRS)
behavioral problems as measured by the BEHAVE-AD-FW and the E-BEHAVE-AD decreased
significantly after the intervention. Caregiver Burden and depressive symptoms decreased significantly
as well. No significant improvements were found for patient’s functional abilities measured with the
Functional Assessment Staging (FAST).
Conclusion: The short intervention showed significant improvements in cognition and behavior of the
PwD and release caregiver burden and depressive symptoms. The program is on-going and very well
received by PwD and caregivers alike. It is cost covering and non-profit oriented. Different national
insurance companies provide financial support for caregivers. Since 2000, 355 PwD and Caregiver
dyads have participated in this program.
P12.2. Evaluation of a group psychotherapeutic intervention for caregivers of people with
Alzheimer’s disease
Poudevida Sandra, Molinuevo José Luis, Gispert Juan Domingo, Camí Jordi
Background: Family and caregivers of people with Alzheimer’s Disease (AD) devote substantial time,
effort and economical resources to their care, even putting at risk their own psychological and physical
health. Interventions combining education about the disease and psychological treatment have been
shown to improve several emotional dimensions and perceived burden. Besides, this type of
intervention also helps caregivers with accepting and managing a new and changing reality and
facilitating the communication among their peers. However, literature reporting precise quantitative
evaluation of the benefits of such programs is still scarce.
Objective: To evaluate the clinical impact of a group psychotherapeutic intervention on the mood state
of primary caregivers of people with AD.
Design and methodology: The trial was carried out in three centres in the Barcelona area. Ninety
primary and informal caregivers (30 participants per centre) were randomized into two groups: 60
participants in the Control Group (CG) and 30 participants in the Intervention Group (IG). Participants of
the IG (ten per group) had a total of 14 weekly group psychotherapy sessions of 90 minutes each.
Psychotherapy was based on cognitive behavioral therapy, whereby participants shared their emotions
and daily activities as a caregiver under the guidance of a therapist. Participants also learned and
practiced the Jacobson relaxation technique.
Both groups were evaluated before (basal evaluation) and after the intervention (final evaluation). The
primary outcome measurement was the differential change from baseline to final evaluation between IG
and CG in mood state measured by the Profile of Mood States (POMS). Secondary evaluated outcomes
were change in caregiver burden (measured by the Zarit Scale), quality of life (measured by the SF-36
Health Survey), anxiety and depression (measured by HAD scale), perceived social support (measured
by Duke-UNC questionnaire) and coping variables (measured by COPE-28).
Results: Results show a statistically significant improvement in mood state and caregiver burden.
Moreover, a tendency towards improvement in the scales of quality of life, depression and perceived
social support was observed. On the other hand, there was no significant improvement in the anxiety
and coping scales.
Conclusions: The results show that group psychotherapeutic intervention for caregivers of people with
AD leads to an improvement of their mood state and perception of burden, thus showing promise in
improving the emotional status of caregivers. However, additional trials with larger cohorts at different
geographical locations are required to confirm these results. For this reason, we are currently starting a
large-scale trial implementing a psychotherapeutic group intervention in 25 centres throughout Spain.
Trial registration: ClinicalTrials.gov - NCT01762618.
Acknowledgements: This study was funded by “Obra Social La Caixa”. The authors thank the
participant centres: Centre Sociosanitari El Carme (Badalona Serveis Assistencials), CAP Les Corts
(Barcelona) and CAP Sarrià (Barcelona).
P12.3. New survey of needs among caregivers of people with dementia
Strasser Claudia
When a person gets dementia, the whole family is affected. Many relatives of people with dementia
make significant efforts in relation to the care of a dementia afflicted spouse/partner or parent. As the
disease develops the relatives take over more and more daily tasks. This can be a great physical and
34
psychological stress factor that can lead to a need for the relatives to be relieved of their caregiver
burden.
A new survey shows that the relatives/closest caregivers are generally very positive about the help they
get, but at the same time they feel that they have some unmet needs. The relatives mention among
other things that they miss the opportunity to take care of their own interests and hobbies with a clear
conscience.
The results of this study show that the following groups of relatives have unmet needs for relief:

Spouses/partners to people with dementia who can no longer perform routine tasks or personal
care, and who cannot be home alone or find their way home

Spouses/partners who have a need for relief once a month

Spouses/partners to younger people with dementia
The following factors are most important to the relatives when leaving the care of their spouse/partner or
parent with dementia to other people:

The help offered by the state or the municipalities meets the needs of people with dementia

Well-known surroundings

Trained staff
The study is based on a combination of quantitative and qualitative elements and includes three main
activities: Predictive analysis, survey and focus group interviews. A total of 742 relatives to people with
dementia participated in the survey.
P12.4. Promoting behaviour and coping in family carers of people with dementia
Htay U Hla
Caring for a person with dementia has been associated with high levels of depression and other
psychological symptoms. Previous research suggests that care giving responsibilities can directly affect
carers’ health behaviour. The present study examined the relationship between coping with caring and
lifestyle behaviours in carers of people with dementia.
Previous research indicates that health behaviour in family carers of people with dementia (PwD) is a
significant caregiver outcome. Despite the growth of knowledge in understanding health behaviour in
general care giving, we know very little about the most important predictors of health behaviour in carers
of PwD. In addition, there are no studies conducted so far that have directly related health behaviour
and coping with care giving, neither have they investigated the influence of depression and anxiety, and
their potential influence in predicting whether a caregiver will adopt a healthy lifestyle. The present study
was a cross-sectional survey investigating the relationship between health promoting behaviours, carer
burden, coping ability in carers and self-reported levels of anxiety and depression.
The main objectives of the present study were: a) to identify associations between coping with care
giving and preventative health behaviours,b) to investigate whether self-efficacy and engaging in health
behaviours is associated with caregiver burden, and c) to examine the contribution of depression and
anxiety in predicting health behaviour in family carers.
In line with previous theoretical models it was hypothesized that higher levels of health-promoting
behaviours will be associated with higher levels of coping ability and lower levels of caregiver burden. In
addition, family carers scoring high in self-efficacy were expected to report higher levels of coping and
more likely to report practising health-promoting behaviours. It was hypothesized that mood variables
such as depression and anxiety will influence overall health practices in family carers of PwD.
P12.5. Caring for residents with dementia: Interplay between emotion, emotion regulation,
and well-being in professional caregivers
Bassal Catherine, Dan-Glauser Elise, Kaiser Susanne
Caring for elderly with dementia in residential settings is a very complex task, not only embracing
technological skills, but also efficient communication and emotional competencies. In order to cope with
high dependency, absence of reliable communication, and lack of interactional feedback, professional
caregivers need to adjust their attitudes and emotions to maintain the caring relationship with the
resident. Consequently, all these conditions require a high emotional involvement, which, in other
contexts, has been frequently associated with burnout and stress. So far, however, little research has
been carried on to better understand the emotions, emotion regulation strategies, and well-being of
professional dementia caregivers, as well as their interplay.
First, the current study aimed at observing the type and describing the frequency of emotions
experienced at work by professional dementia caregivers. Second, the study proposed to analyze the
links between emotion profiles, emotion regulation strategies, and well-being. Additionally, and given the
consistent link between emotion regulation and experienced emotions on the one hand and emotion
regulation and well-being on the other hand, the study aimed third, at testing whether emotion regulation
moderates the relationship between experienced emotions at work and well-being.
35
To fulfill these goals, we conducted a descriptive study on a convenience sample of 43 professional
dementia caregivers. All participants completed standardized questionnaires on emotion regulation,
physical and mental health and burnout. In addition, a non-standardized questionnaire investigating 23
emotions caregivers could experience at work was used.
Results of this research showed first, that in the challenging context of professionally caring for people
with dementia, caregivers experienced more frequently positive emotion, such as joy and pride, than
negative emotions, such as anger and sadness. Second, when they used relatively inappropriate coping
styles, they were more likely to experience negative emotions and less likely to experience positive
emotions. Additionally, these strategies were linked to poorer physical and mental health. Third,
expressive suppression significantly moderates the relationship between experienced emotions and
emotional exhaustion; the latter result suggests that in some circumstances, expressive suppression
might be a protective factor against emotional exhaustion
The current study is a promising attempt to evaluate the complex interplay between emotion, emotion
regulation, and well-being in professional caregivers. This work surely opens the path to future research,
which could more deeply focus on the emotional landscape and on the specific effects of various
emotion regulation strategies used by dementia caregivers at work, while considering their increase in
well-being as the most important target to improve.
P12.6. Dementia Care Networks in Germany: The DEMNET-D-Study
Wolf-Ostermann Karin, Gräske Johannes, Hoffmann Wolfgang, Holle Bernhard, Schaefer-Walkmann Susanne,
Thyrian René
Background: Worldwide the number of people with dementia (PwD) is growing. Therefore great efforts
are directed to support PwD and their relatives in their own living arrangements. In Germany, local
associations of different stakeholders (community care services, medical doctors, therapists, hospital
facilities, self-help organizations, local authorities, etc.) are engaged in providing multiprofessional care
and support for PwD in the community. However, these dementia care networks (DCN) are not
implemented systematically or nationwide. Existing DCN differ regionally and are very heterogeneous.
Empirical findings of helpful structures and effectiveness of DCN are lacking yet.
Objectives: In our study, we survey characteristics and structures of 13 DCN all over Germany in order
to raise knowledge about useful structures of DCN and to prove effectiveness in terms of organizing
better support for PwD and their relatives.
Methods: We consider DCN structures and processes as well as f health related outcomes of PwD and
their relatives. Structures and processes in DCN are evaluated by structured interviews. Health-related
outcomes, e.g. are e.g. quality of life, depression, social participation, use and costs of health care
supply and burden of care are surveyed in a a longitudinal design (2012-2015) with up to n=715 PwD
and family caregivers
Results: The participating DCN are located all over Germany geographically covering more than 5
million residents in urban as well as rural areas. First results of the structured interviews show the
heterogeneity of the DCN as well as the meaning of governance in such network structures. Preliminary
results of the baseline survey on outcomes of PwD and family caregivers will be presented at the
conference.
Conclusion: Our results will shed some light on the question which structural aspects describe
successful DCN in order to improve care and social participation of PwD and reduce burden of
caregivers..
P13. Dementia strategies and policies (Saturday, 12 October, 08.30-10.00,
Vilhena)
P13.1. The extension of the French Alzheimer plan to neurodegenerative diseases
Marie-Odile Desana
In France, for many years, the onset of cognitive disorders was considered as a natural part of growing
old. Since 1985, France Alzheimer held the position for the recognition of dementia as a real disease
quite independent of aging and mental illness.
Before 2004, Alzheimer and related diseases were associated to psychiatric disorders, and then the
second Alzheimer plan has recognized Alzheimer’s disease as one of the 30 diseases whose medical
costs are reimbursed at 100%.
On September 2012, the President, François Hollande has announced the continuation and evaluation
of the third Alzheimer Plan 2008-2012, and its extension to neurodegenerative and psychiatric diseases.
Further to these statements, France Alzheimer and Médéric Alzheimer Foundation, key players in the
field of Alzheimer's disease in France, have jointly realized a report to determine the scope of
neurodegenerative diseases based on their level of closeness with Alzheimer’s disease.
36
A coherent group of neurodegenerative diseases has been identified according to their level of
closeness with Alzheimer's disease. It includes Alzheimer and related diseases, Parkinson's dementia,
dementia with Lewy bodies, Huntington's disease, vascular dementia, but also adults with trisomy 21 or
Down syndrome who developed Alzheimer's disease.
Firstly, there are common clinical signs between these neurodegenerative diseases: cognitive
symptoms, mood changes, behavior, sleep and eating disorders. And secondly, these diseases
converge to the loss of autonomy.
Psychiatric diseases have not been included in the scope defined in this report. The report highlights in
particular the primacy of cognitive disorders that distinguishes dementia from mental illness.
Furthermore, methods of support and structures are different and require radically different approaches.
In this report, France Alzheimer and Médéric Alzheimer Foundation emphasize particularly the need to
preserve the specificities of each pathology in supporting and taking care of patients and their families.
To this end, the transposition of some devices to other diseases should be preferred rather than opening
these devices to other patients.
P13.2. The role of dementia support workers in the community in removing the barriers to
isolation and exclusion following diagnosis
Jones K., Lang I.
The first ever National Dementia Strategy for England was launched in 2009 with a five year plan to
transform the quality of life for people with dementia, their carers and their families. The strategy set out
key objectives which included ‘enabling easy access to care, support and advice following diagnosis
‘(Department of Health, 2009). To address the challenge faced by people with dementia and their carers
in accessing services in the community, the development of Dementia Support Worker roles was
initiated in several areas, including a site in the southwest of England.
By aiming to reduce the sense of exclusion people with dementia currently face due to barriers in
accessing services in the community, Dementia Support Worker’s provide a named contact for a person
with dementia and their carers following diagnosis who can then signpost to appropriate services, offer
care and support and assist in facilitating engagement with other services including health and social
care.
This paper discusses the findings of an evaluation of the effectiveness of the Dementia Support
Worker’s role. This research suggests role has the potential to offer a crucial initiative when people are
provided with a highly responsive, individualised and timely service when the factors which facilitate an
effective service are embedded. This is dependent upon removing the barriers to an effective service
and ensuring the provision of high quality supervision to support the Dementia Support Worker role and
active integrated working with health and social care and possession of person centred attributes.
P13.3. Dementia friendly initiatives: A report on national initiatives in hospital care for
persons with dementia
Splaine Michael
Background: Persons with dementia and their families report that acute care hospitals are not
Alzheimer-friendly or capable, and several cost studies also bear this out. At least 4 countries have
made improving hospital care for persons with dementia a part of their national dementia plans.
Methods: Author has reviewed all national dementia plans, their background papers and all government
reports on implementation. In addition, author has interviewed key informants from patient advocacy
organizations in those countries to cross check government claims.
Results: Several practices have been implemented to improve screening for cognitive impairment within
hospitals settings or improving the actual hospital stay and quality data is just coming on line.
Learning Objectives: participants in this session will be able to identify policy changes made to
improve hospital care, compare and contrast between the countries, and take away practical steps they
might take in their countries dementia plans.
P13.4. Making dementia a global public health priority: Translating global actions into local
energy
Wortmann Marc, Splaine Michael
Several global policy streams are shaping the debate about dementia as a public health priority, from
the expected adoption in May 2013 of a new WHO Non-Communicable Disease Plan and WHO Global
Mental Health Action Plan, recommendations soon to be published from a major meeting on long term
care sponsored by WHO as well as continued European/global initiatives to define and measure healthy
ageing and age-friendly communities. This session will brief participants on the key points in each of
these work streams, tease out their significance for country level and local action, and identify key
documents and sources of additional information.
P13.5. Why case management fits in a dementia-friendly society
Bruijs Anne-Marie, Meerveld Julie
37
Past - building: Case management dementia was one of the aims in the Dutch Guideline for Integrated
Dementia Care (National Programme). Why and how did we start and how could we finance case
management dementia? We explain the consequences and how we could build such a professional
worker.
Present – development: How many case managers work in the Netherlands? How do they work and
get payed. Can we see a change in their performance. Which are the success factors and what can we
learn from the past?
Future - acceptance: How can we guarantee case management dementia for the future (financial as
well as the function). We will show some insights in the Dutch economic and political situation and the
impact on case management dementia. At the moment there is a tending movement towards a civil
society. This is because of the decentralization of governmental tasks. At this point there’s a serious
effort to empower citizens and informal caregivers. Case managers can help in this process. But It also
gives us the opportunity to introduce the dementia-friendly society.
P13.6. Impact of the economic crisis on carers of dementia patients in Greece
Efthymiou A., Vlachogianni A., Potamianou D., Papagianni M., Vamvakari E., Zoi P., Kanellopoulou S., Nika A.,
Touriki E., Margioti E., Nikolaou C.
The current economic crisis has had devastating effects on the Greek Welfare State. Older people,
people with dementia and their carers are experiencing the consequences of worsened socio-economic
conditions: salary and pension cuts, public health cost cuts, taxation and unemployment.
At this moment there are 200.000 people with dementia in Greece. The monthly care cost for
autonomous patients is estimated to 341 €, for highly dependent and still living at home patients to 957
€ and for patients living in Hospices to 1267€. Family carers spend on average 168 hours in caregiving
per month and paid carers spend 72 hours per month (Kyriopoulos, 2005).
Considering that legislation and social support frameworks were already inadequate prior to the
economical crisis, consequences of current recession have multiplied the difficulties carers are facing.
The aim of the present study is to present these changes in carers’ and their family members lives
during these last three years.
A questionnaire was administered to 250 carers, systematic users of Dementia Day Care Centers.
Questionnaire items, in open and closed format questions, were chosen by Day Care Center
professionals, from carer focus groups and the relevant literature. Results are discussed.
P14. New psychosocial interventions (Saturday, 12 October, 08.30-10.00,
Verdala)
P14.1. A lot of things work better with music – Music therapy and dementia
Willig Simone
During recent years, music therapy has become an important part of the psycho-social services
provided for people with dementia connecting to the encounters. Often serving as a different kind of
language, music assists both in establishing contact with other people, and with one’s own emotions
and body. Music has the ability to build a bridge to a person’s past and cultural origin and to promote a
sense of belonging and a lasting feeling of security. Frequently, previously undiscovered resources can
be promoted through the use of music. For example, many people with dementia can easily reproduce
lyrics of songs they used to be familiar with from beginning to end. Memories connected to these songs
are recalled and can thus be communicated. Through this process of reminiscence, a new kind of
communication is elicited, which is both verbal and nonverbal and shaped through the use of musical
instruments. Music mirrors personal identity, which in turn finds a counterpart in musical expression.
Therefore, music is one of the strongest tools in preserving a sense of identity in people with dementia.
Simone Willig is holding a diploma in music therapy (University of Applied Sciences) and has musically
accompanied people with dementia for 13 years. She has authored the book „Mit Musik geht vieles
besser – der Königsweg in der Pflege von Menschen mit Demenz“. In her paper music’s effects on body
and soul are explained and music therapy is introduced in the encounter of people with dementia. A
large number of practical examples are provided, and listeners are invited to participate and to discover
music for themselves.
P14.2. Feasibility of a newly developed tailor-made social fitness program for communitydwelling older people with dementia and caregivers
Graff Maud et al.
Background: Social participation is one of the four central themes for good quality of person centered
care in dementia in Europe.
Aim: to evaluate feasibility and effectiveness of a newly developed tailor-made social fitness program
on participation in meaningful social activities of community-dwelling older people with dementia and
caregivers.
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Intervention: this tailor-made innovative social fitness program starts with a volunteer of a welfare
organization for the elderly, who cycles through the region with all kind of social information (digital &
written information on social activities & - communities), and who attends all kind of places
where older people come. This person informs and motivates people with dementia and their family
members to cooperate in meaningful social activities in the community of the region Nijmegen and
Deventer in the Netherlands. If activities need to be adapted and people need to be trained to be able
to participate, accordingly a multidisciplinary program of occupational therapy (the COTiD program),
physiotherapy (the Coach 2 Move program), home care and voluntary assistance with also coaching
on a distance, is offered.
Methods: the research project follows the steps of the MRC framework for evaluation of complex
interventions. Using mixed methods: qualitative research methods defining successful program
components and testing of the feasibility of the program, a research protocol for a main randomized
controlled trial is defined. Finally, a RCT evaluates the effectiveness of the social fitness program on
older people with dementia and caregivers. Alongside this RCT we’ll perform a process analysis.
Implication of results: successful components, results on feasibility of the social fitness program and
barriers and facilitators for implementation will be presented. Important components of this program are
improvement of participation in social activities, of autonomy, of sense of competence and self-esteem,
decrease of loneliness and increase of quality of life of older people with dementia and their caregivers.
Feasibility of the social fitness program related to the target group of older people with dementia and
caregivers, related to the cooperation of the different professional disciplines and related to
organizational and health system aspects will be presented. Also barriers and facilitators for
implementation and the design of the consecutive randomized controlled trial will be presented at the
conference.
P14.3. Admiral nursing in an acute hospital – creating a dementia friendly hospital
Bell Jeni, Dening Karen
This presentation / poster will present the innovative work undertaken within the University Hospital
Southampton who are the first hospital in the UK to employ an Admiral Nurse (Specialists in Dementia
Care) as a clinical lead in a dementia specific role. Following the SPACE principles, published by the
RCN (2011), the acute trust is working towards creating a dementia friendly hospital.
The National Dementia Strategy (2009) stated clear objectives with regard to improving quality of care
for people with dementia in acute hospitals as well as supporting family carers. This has not always
been the case as the Report of the National Audit of Dementia Care in General Hospitals (Royal College
of Psychiatrists 2011) has shown.
Admiral Nurses have traditionally worked in community settings supporting family carers at home but
this new innovation is aimed at developing the role further to support generalist hospital staff to develop
skills in caring for people with dementia within the acute care setting; be able to develop and deliver
person centered care within a potentially bewildering and busy large general hospital environment that is
adapted to assist the person with dementia in feeling safe and secure.
The Admiral Nurse has been pivotal in creating dementia friendly physical environments for people with
dementia and the launch of a patient passport scheme “This is me” (Alzheimer’s Society)
The Admiral Nurse maintains the traditional role by supporting family carers through the intervention of
Memory cafes based within the hospital
P14.4. Non- pharmacological interventions in the field of dementia
Stephensen Iben
Background/Purpose: The Nationale Dementia Action Plan from 2010 in Denmark has 14 different
recommendations, which are group in 7 areas, Organisation and coorporation, Diagnosis, sociale
efforts, law and dementia, relatives cooperation, education, research and information. Together these
areas are surposed to great a coherent process regarding people with dementia. The National Board of
Social Services in Denmark initiates 4 projects which comes from The Nationale Dementia Action Plan.
Method: These 4 diffent projects about dementia are named ”Survey of needs among caregivers of
people with dementia” “A Campaign about Dementia”” Prevention of demented people with Challenging
Behaviour ” and “Non- pharmacological interventions in the field of dementia” The initiatives are using
different research method for instance surveys, interviews.
Results: The presentation will take its focus on the project ”Non- pharmacological interventions in the
field of dementia”. The purpose of the project is to collect, systematize and evaluate different nonpharmacological interventions and methods in the field of dementia. Which interventions are powerful
when it comes to improving life quality/weel-being/individual function of Elderly people? The website will
contain different research studies (RTC-studies, Questionnaires, Case reports, Qualitative studies,) and
knowledge from practice. The website will go on air september 2013 with themes about Reminicence ,
music and dance, Younger people, Developmentally impaired.
Conclusion: All the 4 projects are important initiatives in order to great a coherent process regarding
people with dementia.
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P14.5. Determinants for success and failure in the implementation of an evidence based
occupational therapy intervention in the Netherlands
Döpp Carola, Graff Maud, Olde Rikkert Marcel, Nijhuis-van der Sanden Ria, Vernooij-Dassen Myrra
Background: A multifaceted implementation strategy was developed and tested to implement an
evidence-based occupational therapy program for people with dementia and their caregivers. The
strategy was effective in increasing the number of referrals to the program, but not in improving
adherence of occupational therapists (OTs). To identify factors that influenced the success and failure of
this strategy we conducted a process evaluation.
Methods: A mixed method approach was used to evaluate the implementation process. Data on
attitudes of OTs and barriers to implementation at baseline were collected from all 94 participating OTs
using a 19-item questionnaire. Data on experiences with the implementation strategy were collected
using focus groups with OTs and telephone interviews with physicians and managers. Data were
analyzed using inductive content analysis.
Results: Our strategy mainly focused on increasing OTs promotional skills due to an initial lack of
referrals. Related to this OTs reported a lack of experience with the program and a low feeling of
competence. In addition, interpersonal contact was experienced as important however exposure of
physician and managers to this type of contact was limited. Managers greatly relied on OTs knowledge
and skills and provided limited support in the implementation process. A barrier related to physicians
was the negative attitude of several physicians regarding psychosocial interventions. Organizational
factors that influenced the implementation were available number of trained OTs, the size of the region a
department needed to cover, the demand for OT, the focus of the organization, and the balance
between cost and benefits of the innovation. Last, the position of OTs within the network, the degree of
collaboration between professionals, and the lack of physicians within the network with sufficient eligible
clients were perceived important determinants for implementation.
Conclusion: The implementation of complex interventions is not an easy task, even if they are highly
effective. In spite of targeting our implementation strategy to pre-identified barriers we only found effects
regarding the number of referrals which could be explained by the main focus on promotional skills. Our
data suggests that a first step to implementation is to make sure individual and organizational
prerequisites for implementation are in place and that partners for collaboration are carefully selected
based on ambition, motivation, and personal commitment. In addition, the implementation strategy
should be network-based and include aspects that directly stimulate inter-personal and interprofessional contact and collaboration.
P14.6. Developing a creative and theatre based intervention for young people with dementia
and their carers.
Ward Alison, Parkes Jacqueline, Prior Ross
This presentation will describe the early stages of an ongoing project exploring the development of a
creative and theatre based intervention for younger people with dementia (under the age of 65 years)
and their carers. Research with this group has found they are often a marginalized group, who
experience significant social isolation (Green and Kleissen, 2013, Harris and Keady, 2009 and
Clemerson et al., 2013). This project builds on some early pilot work undertaken jointly by the
Alzheimer’s Society Northamptonshire and the University of Northampton, which identified that lack of
social engagement is a key concern for those with young onset dementia and their carers. Participants
responding to a postal survey sited age as one of the main barriers to engaging in social activities, with
most service provision aimed at an older age group, not thought to be ‘relevant’ to themselves.
Participants also expressed an interest in taking part in activities where they could share experiences
with peers, reduce their social isolation and engage in creative activities such as singing.
The field of artistic engagement and dementia is a growing one and currently much of the work being
undertaken is with those aged over 65 years and within a care home setting. This can be evidenced
through the work of UK theatre company Ladder to the Moon and TimeSlips in the USA. Interventions
often focus on the carer as a staff member and tailor the work towards developing improved staff carer
and patient with dementia relationships. This project aims to learn from this work and identify how to
adopt positive aspects of the work, for example its focus on a person centered approach, use of music,
creative storytelling and movement, and explore how these can be adapted to create an intervention
which focuses on the needs of those within a younger age group (under 65 years of age) and their
informal carers, living and being cared for within the community.
The presentation will outline the proposed method, which will include participant observations during the
workshops with semi-structured pre and post intervention interviews conducted with the people with
dementia and their carers (up to 5 participant pairs). Each participant pair will also be asked to record
their journey through the intervention with a diary/photo diary which will be used to aid the post
intervention interviews.
This abstract will also present learnings from best practice in the field of creative engagement with older
people with dementia, which will be reviewed in relation to its fit with a younger age group. The project
aims to build on the previously collected pilot data, which identifies the need to provide informal support
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services which are relevant to younger people with dementia and their carers and which provides a
sense of normalization. In addition, the project will aim to investigate the way in which creativity can aid
communication pathways between the carer and person with dementia, consider the role of identity
developed through the creative process and aims to better understand the value of engaging with a
creative intervention from the perspective of the person with dementia and their carer. The intervention
will culminate in a celebratory event which will seek to display the work undertaken to a wider
community audience, via an exhibition or open workshop. Providing a vehicle to challenge the often
negative perceptions held towards dementia and inviting the wider community to consider their
awareness and understanding of dementia and share in the experiences of those participating in the
intervention.
P15. Mediterranean Alzheimer’s Alliance (Saturday, 12 October, 08.30-10.00,
Perellos)
P16. Residential care (Saturday, 12 October, 11.30-12.00, Perellos)
P16.1. Proxy-rated quality of life in residential dementia care – Identification of influencing
factors
Gräske Johannes, Meyer Saskia, Wolf-Ostermann Karin
Objectives: Dementia is a major reason, for relocation into residential care facilities. Because of a lack
of curable treatment, it is considered that quality of life (QoL) is a major outcome in dementia care.
However, a “Gold Standard” for measuring QoL in dementia care is lacking, yet. A broad consensus is,
that self-ratings are the most appropriate way to evaluate QoL. In various studies confounding factors of
a valid self-rating were identified. However, in later stages of dementia, proxy-ratings, e.g. by nurses,
are the way of choice. This method is less critical discussed. Influencing factors on proxy-ratings, like
caregivers´ QoL or burn-out, are hardly investigated.
The aim of the present study is to identify resident-related and nurses-related characteristics influencing
a nurses-rated QoL of people with dementia in long-term care facilities.
Methods: A cross-sectional study was conducted in five nursing homes with altogether ten special care
units for people with dementia using written standardized questionnaires. Nurses were asked to rate
each residents’ QoL using the QUALIDEM and the ADRQL. In addition to socio-demographic
characteristics of the residents, we examined the functional status (Barthel Index, BI), need-driven
behaviour (Cohen-Mansfield Agitation Inventory, CMAI) and severity of dementia (Global Deterioration
Scale, GDS). Furthermore we assessed the circumstances of the QoL-evaluation (e.g. beginning of the
shift) and staff characteristics, e.g. socio-demographic data, burn-out (Maslach Burn-Out Inventory,
MBI), satisfaction with life (SWLS) and attitude towards people with dementia (Approach to Dementia
Questionnaire, ADQ). Multivariate ANCOVA-models were used to analyse confounding factors and to
estimate their impact on the QoL-ratings.
Results: 130 residents (81% female, on averwage 85 years old) were included into the study.
Predominantly, the residents are with a severe level of dementia (GDS 7). More than 50% of the
residents showed at least one need-driven behaviour. 88 nurses (84% female, on averwage 37 years
old) rated the residents’ QoL moderately. The circumstances of the evaluations differ, e.g. done at
home, or during the shift. Overall, we found great variations in the staff-rated QoL of single residents.
Explaining factors for the QUALIDEM total score (ANCOVA: p < 0.001; R2 = 0.165) and ADRQL total
score (ANCOVA: p < 0.001; R2 = 0.244) are among others burn-out (MBI) and the nurses’ satisfaction
with life (SWLS). Further results will be presented at the conference.
Conclusion: The results give an understanding, how nursing staffs perceive residents’ QoL. This is a
precondition to obtain more valid proxy-ratings of QoL for people with dementia and finally also a basis
to provide tailored care.
P16.2. Gardens: living spaces for the well being of people with dementia and their relatives
Villez Marion, Guisset-Martinez Marie-Jo
Since 2003, there has been a growing interest for outdoor spaces in care settings for people with
dementia. They became a key issue in public policies and for the staff. In this context, the Fondation
Médéric Alzheimer decided to conduct a study on gardens in day care centers, nursing homes and
geriatric hospitals.
This qualitative study includes 21 projects, in France and abroad, and is based on field investigations
through direct observations, interviews of people with dementia, families and staff members. In addition,
our work has been enriched by the learnings of a national seminar of professionals to confront and
share their practices. This research is not about defining an exclusive type of garden, or setting up
guidelines and standards. Rather, it enhances knowledge about the wealth and variety of gardens
observed from the experience of project leaders who have made outdoor spaces more attractive and
lively.
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The analysis of the diversity of practices and outcomes of the gardens, in terms of well-being, social life
and quality of life constitutes the key issue of this work. To describe the various initiatives, we built a
typology of nine garden categories according to their main distinctive features. We also studied the
motivations of the staff to be committed in a garden project and the processes of designing and setting
up such a place.
The free access to nature and to a sensory experience (fresh air, water, trees, plants, animals, etc.), the
pleasure of gardening are some of the treasures provided by gardens. Such gardens can also become
spaces that everyone can take over in his own way. It is also an appropriate support to empower people
with dementia, to strengthen social and family bonds, and to connect the inside and outside of the
setting.
To make all this possible, some conditions have to be fulfilled: taking into account the wishes of the
people with dementia, promoting commitment of the whole team (manager and staff), sharing a common
vision of dementia care, and dedicating some financial resources.
P16.3. Dementia Care Mapping intervention: the challenge of improving daily practice in
nursing homes
Halek Margareta, Dichter Martin, Dortmann Olga, Riesner Christine, Quasdorf Tina
Background: The main objective of the care for people with dementia is the maintenance and
promotion of quality of life (QoL). Most of the residents in nursing homes have challenging behaviors
that strongly affect their QoL. Person-centered care (PCC) is an approach that aims to achieve the best
possible QoL and to reduce challenging behaviors. Dementia Care Mapping (DCM) is an observational
instrument to implement person-centred care. An Australian Study (Chenoweth et al. 2009) suggests
that the positive effect of DCM on agitation can be generalized to other health care systems. Up to now,
no data exist on the effects of DCM on challenging behavior of residents with dementia in German
nursing homes.
Method: The ongoing quasi-experimental study ‘Leben-QD II, Strengthening Quality of Life for People
with Dementia’ started in 2011. It evaluates the effectiveness and implementation of Dementia Care
Mapping (DCM) in German nursing homes (Current Controlled Trials ISRCTN43916381). The influence
of newly implemented DCM (group B) on outcomes mentioned below will be compared to 2 comparison
groups (group A and C): in group C an alternative QoL assessment (QUALIDEM) was introduced at the
begin of the study, in group A DCM has already been implemented for a long time before the study start.
9 nursing homes take part in the study; each institution is represented by one ward. Three nursing
homes at a time create one study group (A, B or C). Outcomes of the study are: residents´ QoL and
challenging behaviors as well as staffs attitudes toward dementia, job satisfaction and burnout. These
outcomes are measured at baseline (T0), 12 (T1) and 22 (T2) months later. In this presentation changes
in prevalence of residents´ challenging behavior (measured by NPI-NH) between T0 (n=154) und T1 (n =
147) will be analyzed between the three groups and within each group 1. descriptively and 2. using an
appropriate statistical model which accounts for dependencies in data due to e.g. repeated
measurements.
Results: The mean age of residents ranges between 82 to 84 years in the three groups, on average 80
to85% are female and 30% to 44% of residents have very severe dementia (FAST=7).
The total prevalence of challenging behavior (NPI-NH) raised at T1 in group A (88% to 93%) and B (96%
to 98%) and decreases in group C (90% to 89%). However changes are small and not statistically
significant. Severity of dementia severity (FAST) and care dependency (PSMS) did not change over
time. The differences between groups are also not significant.
Conclusion: Chenoweth et al. (2009) showed that DCM has a positive impact on agitation (CMAI), but
no effect on overall challenging behavior (NPI-NH) after 8 months. Our current interim analyses results
show a non significant increase of challenging behavior in both DCM groups during the first 12 months
(group A and B). We assumed that those nursing homes which have already implemented DCM for long
time (group A) show better results on development of challenging behavior. This could not be verified.
Results of process evaluation indicate that the effect of the intervention is influenced by the differences
in implementation (e.g. achieved degree of implementation).
P16.4. Social interaction and dementia: how people with dementia behave when they are put
in social situations? An observational study
Mabire Jean-Bernard, Garitte Catherine, Vernooij-Dassen Myrra, Octave-Rolland Coralie, Gay Marie-Claire
Effective communication processing is central for the development and maintenance of social
interactions. In dementia, social interactions are less obvious because of the nature of the disease,
which involves difficulties in words finding and in verbal comprehension. We have little information about
the nature of social interactions of people with dementia, especially in nursing home. This is surprising,
since they constantly meet each other in such structures. How do they communicate to each other?
The main objective of this study is to investigate social interactions between people with dementia who
first meet, using direct observation.
42
Methodology: 54 residents with dementia, living in a French nursing home and volunteered to
participate were drawn lots, matched by age, gender, socio-cultural level and severity of disease in 9
groups of 6 residents. Each group is invited to a meeting of 30 minutes and their behaviours are filmed.
We constructed an ethogram of observation to evaluate auto and hetero centred behaviours like facial
expressions, look or verbal interactions for example. All the data were analysed by two raters to have a
satisfactory agreement score of video coding. Analysis of the results is in progress. The auto-centred
behaviours and social interactions observed will be presented in descriptive ways and in terms of
frequency of occurrence.
The perspectives of this study are: 1. To give information about social interactions of people with
dementia living in nursing home when they are put together. 2. To propose an observational tool to
analyse social interactions of people with dementia. 3. To have some tracks of practical applications to
improve social interactions between people with dementia living in nursing homes.
P16.5. Data collection and processing in care of persons with dementia
Holmerová Iva, Mátlová Martina, Hýblová Pavla, Janečková Hana, Vaňková Hana, Wija Petr
The long-term care is one of the main problems of public health and health policy in Europe.
International documents define long-term care (LTC) as spectrum of services provided to persons with
long-term limited self-sufficiency who are dependent on the assistance of others and their ability to
perform basal and instrumental activities of daily living is limited (over the extended period of time). This
situation may occur in any age, however there are mainly persons of older age, who suffer more
frequently from degenerative and neurodegenerative diseases, mainly dementia. The quality of care for
persons with dementia provided by some institutions is insufficient. This situation is known also in the
Czech Republic as the term „long-term care hospital“ (LDN in the Czech abbreviation) has become
generally synonym of bad quality of care or bad quality of life of persons who live there The situation of
LTC provision is complicated by the fact that it is not sufficiently defined, nor in the legislation, LTC
services are provided in the health care system by different institutions (LTC hospitals, departments of
aftercare, psychogeriatric departments, continuing stays in health instiutions because of social reasons
etc.) and also by different social care institutions (so called nursing departments in homes for seniors,
homes with specific regime etc.). As we have mentioned above the legislation is not clear, has many
gaps with severe impact in practice and does not provide clear guidance for the LTC. There are many
organisational problems and system failures LTC care provision. Official control and supervision
systems do not address needs of persons with dementia in the institutional care.
Czech Alzheimer Society developed the quality criteria for care of persons with dementia and system
of quality certification „Vazka“ (according to the logo of the society). This system which includes criteria
of care, environment and staff and method of its evaluation will be presented in the lecture.
This research project is supported by the grant NT11325 of the Ministry of Health of the Czech Republic
P16.6. Integrated sensor-based monitoring for people with dementia in a nursing home to
promote a person-centered care
Kikhia Basel, Karlsson Eva
The increase in average lifespan across the world has been accompanied by an unprecedented
upsurge in the occurrence of dementia with high socio-economic costs. The proposed presentation will
describe the design of a comprehensive personal health system Dem@Care (www.demcare.eu) for use
in nursing homes as well as in private homes and diagnostic rooms. The Dem@Care system monitors
daily activities and behaviours by evaluating a combination of clinical parameters related to people with
dementia. Multi-sensor data analysis, combined with intelligent decision making mechanisms, are used
to allow an accurate representation of the person’s current status. The system assesses the current
condition of the person with dementia and then determines abnormalities in the daily life patterns, which
can be used to alert the responsible nursing home staff. Caregivers and clinicians can thus maintain a
comprehensive view of the health status and the progression of the cognitive decline, which in turn
enable a personalization of care interventions. The aim of the study in the Nursing Home is to evaluate
the usability and effectiveness of such a service to support a person centered care of people with
dementia in Nursing Homes.
Five significant categories of clinical phenomena have been explored in depth in terms of what
technology can offer to better understand the following characteristics of a person with dementia: Sleep,
Exercise, Eating, Social Interaction and Mood. It is important to note that a person with dementia may
face challenges in one or more of these areas, which suggests that a personalised approach to
addressing problems in these areas is much preferable. Innovative bracelets for mood detection
together with sleep and monitoring sensors placed in the person’s room will be used to observe the
behaviour of the person with dementia in the Nursing Home in regards to the defined categories. An
aggregated data-set based on the sensor data will be stored on a local computer in the nursing home,
which represents the behavioural patterns of the person’s life. The usability, acceptability and
functionality of the sensorised system will be evaluated through a qualitative approach, which is
continued through the phases of the evaluation. In this process the experience of the users will be
documented in a systematic way and regularly be fed back to the technical partners in order to further
43
develop the Dem@Care prototypes. An evaluation of the system effectiveness will start when it is
agreed that a sufficient level of usability and functionality is reached where the output of the system can
provide valuable information to the staff.
The validation and assessment of the Dem@Care technology will be done through a three-staged
evaluation process to ensure the saliency and effectiveness of the system being developed. The first
evaluation in the Nursing Home will start in June 2013, and the authors will have preliminary results to
present at the Alzheimer Europe Conference.
P17. Preventing behavioural problems and hospitalisation (Saturday, 12
October, 11.30-12.00, Perellos)
P17.1. Fire and rescue service and Age UK collaborate to keep people with dementia safe,
well and independent
Morris Evan, Clemens Ken
Cheshire and Rescue Service and Age UK Cheshire have worked together for a number of years to help
older people stay safe from fire in the home and to access the advice and support they need to live
independent and fulfilling lives.
This unique partnership, known as Springboard, targets at-risk individuals through UK national health
service (NHS) information supplied under a groundbreaking data-sharing agreement.
In what is thought to be a national first, Springboard has recently employed a specialist dementia
adviser. The post is half-funded by the fire and rescue service and half by the NHS, commissioning
through Age UK Cheshire. The collaboration recognises that there are now more than 4,200 people
living with dementia in western Cheshire, but also that more than half of all fire deaths and injury in the
home nationally are among people aged 60 and over. Recent research has also shown that impairment,
disability and dementia are a substantial factor in increasing someone’s risk of injury or death from fire in
the home.
Since her appointment in June 2012, the adviser has supported 140 individuals. Experience gained from
UK Department of Health trials show that those living with dementia require practical and emotional
support to enable them to live well and safely in their own homes and avoid hospital admission. As such,
she signposts to a diverse range of services that maintain independence - such as those advising on
employment, access to benefits, support networks, home environment, falls prevention, assistive
technology and community equipment.
Evaluation is ongoing, but we have had powerful feedback direct from carers about the significant
difference the adviser is making to their lives. Early discussions are also underway about appointing a
second adviser in eastern Cheshire, as agencies begin to recognise the potential savings that can be
gained from avoiding admission to hospital or residential care.
P17.2. A management plan for people with dementia: an experience of a special care unit
Bonora Annalisa, Bevilacqua Petra, Turci Marina, Fabbo Andrea
The main problem in dementia illness that caregivers have to afford usually concerns the management
of behavioral problems The Mirandola dementia care unit provides temporary admissions to dementia
patients to study problems and find proper solutions especially working with non pharmacological
strategies like gentle care, occupational therapy and multisensory stimulation. The analysis of benefits
was based on a multidimensional evaluation of patients obtained by comparing the data at the entrance,
at discharge and at periodic follow-ups (6, 12, and 18 months after discharge). Among other data we
measured the NPI scores (Neuropsychiatric Inventory) and the consumption of sedative drugs. Patients
had moderate-severe dementia diagnosis and behavior disorders for an NPI score higher than 24 at the
entrance. The study was developed on 63 cases71% of the people hospitalized in the NA was
discharged with a domiciliary project. The comparison made between the average NPI scores obtained
at the entrance (44.66) shows a significant reduction in behavioral disorders at discharge (30.45, p
<0.05) which was maintained at a distance of 6 (28.81; t = 3.663, p <0.05) and 12 months (21.29, t =
2.743, p <0.05). These outcomes suggest that it is possible to plan a home care for dementia patients in
their average and late stage with behavioral disorders. This is promoted in the dementia care unit by the
prevention of situations that can generate agitation and aggression in these people. These benefits
seem to last even after a period of 12 months after discharge.
P17.3. Cochrane Review: Case management for people with dementia
Orrell Martin, Reilly Siobhan, Toot Sandeep, Miranda-Castillo Claudia, Hoe Juanita, Challis David, Malouf
Reem
Background: Case management aims to organise and coordinate care services to provide long-term
care for people with dementia as an alternative to admission to a care home or hospital.
Objectives: To evaluate the effectiveness of case management for people with dementia on delaying
institutionalisation, improving quality of life and reducing hospitalisations.
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Design: We searched databases including the Cochrane Library, MEDLINE, EMBASE, PsycINFO,
CINAHL, LILACS and ongoing clinical trial databases for case management studies including
randomised controlled trials involving people with dementia living in the community and their carers.
Outcomes included institutionalisation, hospital admissions, mortality, patient mental health, patient and
carer quality of life, and carer burden. Data was extracted and checked by two reviewers.
Results: 13 trials (9615 participants) were included in this review. Four trials provided data on
admissions to care homes results significantly favoured the case management group at 6 months but
not for other time points. Results from three trials found no clear evidence that case management
improved quality of life for people with dementia or carers. Three trials provided data on carer wellbeing
and at 6 months a significant improvement was shown for case management. Eight trials assessed
carer burden and benefit for the case management group was found at 6 months. Six trials provided
data on behaviour and this significantly favoured case management at 10-12 months, and also at 18
months (3 trials). There was no evidence of benefit to patient depression (3 trials), functional abilities (3
trials), or cognition (6 trials).
Discussion: This review provides good evidence for the benefits of case management for people with
dementia in terms of (1) reduced admissions to institutional care, (2) reduced behaviour disturbance, (3)
improved carer burden and wellbeing. Case management may involve higher use of community services
but this is offset by a lower use of acute services and hospitalisations. In most studies, case
management was one aspect of a broader programme of care making it difficult to study the specific
effects in detail. It is reasonable to conclude that case management is effective for both the person with
dementia and their carer. Future studies should use process measures to demonstrate the extent to
which case management is delivered and provided.
P17.4. Preventing aggressive behavior and BPSD – a multicomponent method and
organicational model
Andersen Knud D.
This presentation will describe a project that develops a method and a model for working with persons
with BSPD and aggressive behavior I care homes. The presentation outlines the project and the
method, that the project has outlined.
As a part of the Danish National Dementia Plan, the project has developed a multicomponent method,
that will help care homes leaders and employees in care homes, to better analyze and meet the needs
of persons with dementia, who develop, or risk developing, aggressive behavior.
The method describes both the roles, responsibilities and tasks of leaders, experts in care homes, and
the front personel, and enables them to better deal with behavior, that is challenging both physically and
mentally. It also defines various key areas, where typical personel in care homes will need to have
boosted their skills and knowledge, in order to obtain the right competences, if they are to fulfill their
role, and withstand the pressures of working with persons with severe dementia and FTD.
It also describes specific procedures, that needs to be followed, if both leaders and caregivers are to
plan and deliver their best efforts to help the persons with dementia.
Furthermore, it identifies how leaders and experts in the care homes are to work together with
psychiatrists, general practitioners, and other specialists, in order to deliver the needed focus on the
person, and thereby finding the way to give the right care, in order to minimize the aggressive behavior.
Thereby both the specialized knowledge are taken in consideration, and the organizational structure,
that constitutes a well equipped care environment are thoroughly outlined.
The goal throughout this method, and the model, is to ensure its implementation and foundation as a
natural part of the care, and to always seek to find the way to help the person, not help the caregivers or
the homes have a somwhat easier workflow. Behavioral issues are mainly seen as a symptom of
insufficient or unhelpful factors in the surrounding care environment, and as a way for the person to
communicate their needs. On the other hand, the model is very aware of equipping both leaders and
caregivers in a way, that makes them better suited for this very complex job, that is I many respects
different from 80% of the “normal” dementia care.
This makes the care homes better suited to deliver the best care, to persons with severe dementia,
(often of the frontotemporal variants). The method describes procedures and key aspects, that needs to
be in place, if a care home wants to make sure they have the right mix in the care.
The project uses both qualitative and quantitative methods to monitor how the projects have impact on
both behavioural factors in the care homes, and in the way the personal thrive.
The project followed nine care homes in three different municipalities in Denmark.
P17.5. Caregiver needs analysis for product development of an assistive technology system
in dementia care
Megges Herlind, Jankowski Natalie, Peters Oliver
Background. Caregivers of individuals with dementia are heavily burdened. Caregiver burden affects
psychological and physical health. Prevention programs on several levels do not serve the problem
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adequately right now. The development of several technical assistance solutions in the Ambient
Assisted Living sector is going on. Right now user participation in the product development process is
underrepresented, which is declined as one probably reason for the low-use of such systems.
Our research focuses on suitable methods and strategies for the product development of an assistive
technology system in dementia caregiving. It is very often described as a challenge to manage and
conduct the interdisciplinary work. Many professions, such as designers, informatics, gerontologists and
psychologists should be part of the development process.
Beyond that, to be finally able to develop products that provide a real relief for caregivers and people
with dementia and that can be sold with a profit, it is inevitable to include the user in the development
process.
Aims. Our aim is to overcome such challenges and support the product development process by user
participation. In our studies we evaluate several prototype versions of the Digital Care Support System
with the caregivers of people with dementia and professionals working with them. In preliminary studies
the main focus was to figure out the wishes and needs of caregivers regarding an assistive technology
system. Later on we evaluated a prototype version with experts. In this study we focussed on usability
and technological reliability.
Methods. In our research work we refer to usability-research-methods to serve the userdesigner
interface adequately. To evaluate the different prototype versions we used a mixedmethods design. In
the user test with the caregivers (N=20) they were first introduced into the system, edited a few tasks
and afterwards they evaluated the system in a semi-structured interview. The expert-based usability
evaluation (N=17) with a prototype of the Digital Care Support System also took place in day-to-day life.
Afterwards they rate the system in an interview and in a questionnaire under various aspects.
Descriptive statistics, inter-correlation analyzes and regression analyzes were performed. For qualitative
examination a content analysis was accomplished.
Results. In the user test with the caregivers the issue of how functional needs of caregivers correlate
with the different stress-factors and resources was investigated. Regression analysis revealed that
especially older caregivers (ß=-.69,*p<.05) who felt unhealthy (ß=- .46,*p<.05) are less interested in
community and information features. In addition the value of organisational features increases for those
with a negative health progression (ß=-.47,*p<.05) and also when the caregiver lives together with the
care recipient (ß=.69,*p<.05). Thus younger caregivers who are not living together with the care
recipient, can profit of community and organisation features. Regression models for security functions
and the overall evaluation of the system were not significant. Features concerning security, such as
locating and fall detection assistance, are essential for all caregivers regardless of other factors.
Altogether the high potential of assistive technology solutions is recognized by all the caregivers, which
is shown by the overall positive evaluation of the system.
The results of the expert-based evaluation demonstrated the high relevance of usability factors.
Prevalently the appraisals emphasized the need to reduce the spectrum of features for potential users
and to significantly improve the design and the technical efficiency.
Conclusion. For the further development of the Digital Care Support system the results at hand of our
research provide a lot of important implications which can also be used by related science departments.
Accordingly it is the most relevant task to implement security features. Furthermore it is required to
develop modularized and individual assistive technology solutions to address the diverse needs of
caregivers. Our results underline that one should aim to develop systems that meet the caregivers and
the care recipients needs.
P17.6. Cochrane Review: Psychological treatments for depression and anxiety in dementia
and mild cognitive impairment
Qazi Afifa, Orgeta Vasiliki, Spector Aimee, Orrell Martin
Background: Anxiety and depressive symptoms are very common in people with dementia or mild
cognitive impairment and reduce quality of life. However antidepressants have only limited effectiveness
and there have been few psychological treatment studies try and improve mood. The studies included
individual or group interventions and most are based on established psychological models such as
cognitive behavioural therapy.
Aim: The aim of this systematic review was to examine the evidence of effectiveness for psychological
treatments in reducing anxiety and depression for people with dementia or MCI.
Design: We searched the Cochrane Dementia and Cognitive Improvement Group's Specialised
Register and additional sources for both published and unpublished data. Randomised controlled trials
in people with dementia or MCI comparing a psychological intervention with a control or comparison
group receiving no specific psychological intervention were included. Two review authors (AQ, VO)
worked independently to select trials, extracting data and assessing studies for risk of bias using a data
extraction form. We contacted authors when further information was not available from the published
articles.
Results: Four randomised controlled trials involving 374 participants met the inclusion criteria. The
studies evaluated counselling, psychodynamic approaches, or multimodal interventions combining
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exercise, CBT and support groups. The meta-analysis of the data favoured psychological treatments but
the difference was not statistically significant, and the overall improvement was small. Only one study
measured outcomes for anxiety. No adverse events were either reported or identified. The two studies
using counselling approaches found a reduction in depression in people with dementia. The 2 studies
that used psychodynamic or multimodal CBT approach found no differences between treatment and
usual care in depression outcomes. Most of the trials included people in mild stages of the disease,
although one of the trials included people with severe dementia.
Discussion: There were some suggestions that psychological interventions could improve mood but
overall there was no clinical benefit relative to the control group. Limitations include the great variability
in the nature of the psychological interventions used, the small sample sizes and differing
methodologies. Further randomised controlled trials are needed to evaluate the effectiveness of
psychological interventions in reducing anxiety and depression in people with dementia and mild
cognitive impairment.
P18. Legal and ethical issues (Saturday, 12 October, 11.30-12.00, Vilhena)
P18.1. A person with dementia and restriction of freedom
Mäki-Petäjä-Leinonen Anna
Opinions about what constitutes a restriction of liberty depend on definitions. Broad, everyday definitions
of the restriction of freedom might emphasize the prevention of a person from doing s/he appears to
want to do. There are also legal definitions which may change over time as attitudes towards restrictions
of liberty and practices change. Legislative changes often take time and in the period leading up to the
change, people may lack adequate protection.
For example in Finland Section 6 of the Constitution states that everyone has the right to life and
personal liberty, physical integrity and security of person and that no-one should be tortured or
otherwise treated in a degrading manner. Furthermore it is stated that there shall be no interference in
personal integrity or deprivation liberty without legitimate grounds prescribed by an Act of Parliament.
For this reason in 2010, the Ministry of Social Affairs and Health established a working group whose aim
is to assemble the provisions relating to the deprivation of liberty and self-determination of all
patients/clients of social and welfare within the same act if possible. The reform of the legislation
specially addresses the deprivation of liberty in the care of people with mental disabilities and dementia.
It´s goal is also to strengthen the multidisciplinary co-operation and availability and development of
services in such a way as to lessen the need to limit liberty and self-determination.
The draft of the new legislation will be published before the summer of 2013 and term of office of the
working group ends on 31.12.2013. This presentation concentrates the ongoing legislation process in
Finland and how the new legislation may affect to the legal position of a person with dementia.
P18.2. Preventing crime and safeguarding people with dementia
Manthorpe Jill, Samsi Kritika
Elder abuse is “a single or repeated act, or lack of appropriate action, occurring in any relationship
where there is an expectation of trust, which causes harm or distress to an older person” (definition
adopted by World Health Organisation).
The Mental Capacity Act 2005 was implemented in England and Wales in 2007. Among other things, it
defines and makes punishable (in Section 44) 2 new offences of “ill-treatment” and “wilful neglect” when
occurring in a relationship of care with a person lacking mental capacity. There have been a small
number of but well-publicised criminal prosecutions under the Act.
Our study was conducted in 2 parts. Part 1 used qualitative interviews with a range of dementia care
practitioners to ascertain their level of awareness and understanding of the offences; and the impact (if
any) of these on their practice. Part 2 involved a nominal consensus group discussion that aimed at
developing an Education Prescription that could enhance awareness and contribute towards training in
this area.
Findings from Part 1 indicated that most dementia care practitioners had limited awareness and
possessed common-sense rather than specific understanding of the offences. Many practitioners were
unclear about thresholds for action and uncertain about the best ways to collect evidence. The nominal
consensus group in Part 2 of the study included stakeholders, ranging from lay participants, social
worker, General Practitioner, to a Police Officer in charge of safeguarding. The general agreement was
the need for an Educational Tool that could highlight the severity of the crimes being committed and that
they were punishable by law under the Act. The group felt that clarifying the pathway to alerts was
important; and good, strong relationships between safeguarding practitioners and the Police was
required for allegations to be taken seriously. The need for the Education Prescription to be contextspecific and developed differently for different settings was highlighted. The use of case studies of
successful prosecutions was seen as powerful.
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This presentation will present findings from qualitative interviews in Part 1; examples of case scenarios
of prosecutions under Section 44; and the way in which the Education Prescription to prevent crime from
taking place in institutional settings is being designed and developed.
P18.3. The therapeutic use of doll therapy for people with dementia: ethical considerations
Mitchell Gary
In light of the increasing population experiencing dementia it is not surprising that researchers and
practitioners are increasingly interested in therapeutic ways to improve the quality of lives of people with
dementia. The therapeutic use of doll therapy for people with dementia is one method that has been
growing in recent years. Providing a doll to someone with dementia has been associated with a number
of benefits which includes a reduction in episodes of distress, an increase in general well-being,
improved dietary intake and higher levels of engagement with other people (James et al, 2006;
Ellingford et al, 2007 and Bisiani and Angus, 2012). Despite some positive findings from empirical
studies, there are some limitations to the practice of therapeutic doll therapy.
The theoretical base for how doll therapy can be positive is understood through the work of John
Bowlby’s work on ‘attachment theory’ (Bowlby, 1969). It is important to highlight that this conceptual
work was originally focused on child attachment and has limited reference to older people with dementia
(Mitchell and O’Donnell, 2013). With consideration to Tom Kitwood (1997), whose work on personcentered care remains pertinent, Kitwood (1997) warned that behavior that infantilized was detrimental
to people with dementia. However advocates of doll therapy could point to Kitwood’s (1997) assertion
that, ‘if a need is not met, a person [with dementia] is likely to decline and retreat. When the need is
met, a person may be able to expand again’. There are a number of authors who believe the practice of
doll therapy is demeaning to people with dementia (Boas, 1998; Cayton, 2001 and Salari, 2002).
The therapeutic use of dolls for people with dementia is a hugely contentious issue. It can be argued
that it fulfills the concepts of beneficence (as it facilitates the promotion of well-being) and respect for
autonomy (as the person with dementia can exercise their right to engage with dolls if they wish).
However it can also be argued that doll therapy is unethical when consideration is given to dignity (in
that people with dementia are encouraged to interact with dolls), truthfulness (as the carer/health
professional is treating the doll like a real-life baby) and non-maleficence (considering the potential
distress this therapy could cause for family members).
There is some evidence to suggest that the therapeutic use of doll therapy in dementia care can be of
benefit to some people with dementia. However in the absence of rigorous empirical evidence or
legislative guidelines, it is a therapy that must be approached with a degree of caution owing to the
potential different interpretations of Kitwood’s ‘malignant social psychology’ as well as modern
healthcare ethics when considering doll therapy.
P18.4. Improving advance care planning in patients with dementia in a nursing home:
defining facilitating factors and barriers
Wils Maartje, Verbakel Jan, Lisaerde Jo
Background: Advance care planning (ACP) consists of an individual approach to anticipate the
decisions on treatment during the course of illness and at the end of life. In residents with dementia in a
nursing home there is a pressing need for ACP. Timely discussion of the goals of treatment increases
the resident’s autonomy and the quality of life and care.
Objectives: The aim of the study is to assess the effect of training on the registration of care goals in a
nursing home with a population of elderly residents suffering from dementia. Another objective is to
explore the views of nursing home staff on ACP in patients with dementia.
Methods: This quantitative study consisted of a pre- and post intervention evaluation. The setting was
a nursing home in Leuven, Belgium, providing care for residents diagnosed with dementia with a
population of 124 residents. The intervention consisted of a 12-month program for nursing staff (n=13)
including training in theoretical and communication skills. This group was asked to complete a
structured 10-itemquestionnaire (type Likert) at 0 and 12 months between January 2011 and January
2012 exploring their views on factors that facilitate or obstruct the implementation of ACP. At the same
time a pre- and post measurement of all ACP-related registrations in the electronic medical record took
place.
Results: At 12 months we noticed no significant increase in the number of appointed representatives or
written wills, specifying the desired care goals. There was however a significant increase in the number
of interviews regarding ACP held with the resident, and also a significant increase in the number of care
goals documented. We identified several facilitating factors and barriers for the ACP process.
Furthermore we saw significant changes in caregiver’s views on ACP at the end of the intervention
period.
Conclusions: Prior to the intervention the members of the nursing staff presented some resistance
towards the implementation of ACP, but supported the ACP process afterwards. ACP was said to help
raise the dignity and autonomy of the residents, and was especially useful in improving clarity for
medical decision making. The number of successfully recorded information on ACP increased
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significantly. Special attention should be given to the barriers that obstruct the implementation of ACP in
the nursing home setting.
P18.5. Moving on from the Home Door – Ethical aspects of using tracking technology
Riikonen Merja, Palomäki Sirkka-Liisa
Background: The basic aim of ethically acceptable technology is to increase the safety of people with
dementia, without limiting their actions and right of self-determination. At its best, tracking technology
can protect privacy and support human contacts. On the other hand, it can be considered obtrusive and
a risk to persons’ autonomy. In this research, tracking technology is seen as a tool that can promote
affected people’s autonomy, participation and safety.
The project, ‘Moving on from the Home Door’, was to combine research findings into a service involving
individualized exercise programmes and tracking technology to support independent mobility of people
with dementia. Decision to use technology was made commonly with persons with dementia and their
families. Participants were 30 persons in early stages of dementia, in three intervention groups. The
Vega bracelet, a tracking device with an emergency button as used as a technological tool.
Research questions and methods: During the research process, ethnographic observation and
interview data were collected on participants’ and their families’ experiences and environment. A
number of ethical controversies became evident during data collection and analysis.
This paper discusses the following question: What ethical issues and controversies must be addressed
when integrating tracking technology into daily lives of people with dementia?
Results: The use of tracking technology affected participants’ autonomy positively by increasing their
independent mobility in the close environment. The device helped them to maintain social relationships
with neighbours and friends and even resulted in new acquaintances on exercise tracks. Especially
persons in a very early stage of dementia, who could keep in mind the reason for using the device
without continual guidance, enjoyed an increased feeling of safety. Both the participants and their
families found it relieving that there was a way to instantly locate a missing person.
The device was found obtrusive from the perspective of autonomy in situations where participants had
to wear the bracelet continuously. The use of the device became a daily object of discussion and
arguments between participants and their family members. Problems were especially common for those
people with dementia, who were not aware of their illness or who denied their condition or the need for
the device. Participants also worried that the device might be used in situations other than emergencies.
In actual fact, the device did not collect data on the routes they took, but it was difficult for them to
understand and remember this. Family members balanced between safety and persons’ right of selfdetermination. Exaggerated concern for safety limited participants’ opportunities to move around,
whereas with help of the device it was possible to increase the designated safe area.
Participation of people with dementia was diminished in situations where they felt that the use of the
device labelled them as dependent and incapacitated. They experiences uninformed remarks from
outsiders as negative, possibly also feeling that their self-concept was threatened. This may be
associated with the fact that the stigma of dementia still prevails in society.
Conclusions: Ethical issues and controversies related to the introduction of tracking technology need to
be addressed from the viewpoint of experiences and benefits to people with dementia and their families.
To do this, we need to take a wider ethical perspective, paying attention to both negative and positive
factors in the use of tracking technology. On one hand, a tracking device promoted autonomy,
participation and safety of people with dementia. On the other hand, the obtrusive nature of the device
was found to restrict their autonomy and participation.
P18.6. After diagnosis support in Portugal – Important issues on advance directives
Zincke dos Reis Maria do Rosário
Alzheimer Europe and its member organisations constantly campaign on the importance of early or
timely diagnosis. The expression “timely diagnosis” is preferred as it brings into focus a very important
question: “Timely for what?” Most of us will concur that this relates to the time in finding ways of delaying
the symptoms, the time to think and prepare for present and future decision taking, the time to seek help
and decide on who shall take decisions on behalf of individuals with dementia and the time to let family
members know of prior intentions when future decisions concerning health or end-of-life issues arise.
As from August 2012, it became possible in Portugal to make a binding advance directive either in the
form of a living will or in a form of a healthcare proxy. These advance directives may include: artificial
support for vital functions, futile not-useful treatments, adequate palliative care and permission or refusal
to participate in research or clinical trials.
Advance directives must be discussed in the framework of the fundamental rights and, as an important
tool of preserving self-determination. Health, social and legal professionals must be prepared to inform
the public and allow sufficient time to discuss with them the advantages and disadvantages of making
advance decisions.
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Advance directives give rise to a number of ethical and legal issues of which health care professionals in
Portugal are not sufficiently aware of. A significant number are of the opinion that these are not
important as doctors rely mostly on the will of the patients and what may be included in a living will does
not necessarily contribute to proper palliative care. Thus it is imperative that public discussions on
advance directives are promoted in the best possible way.
The aim of this presentation is to give a general overview of advance directives in Portugal and will
discuss issues relating to the limits, duration, areas of conflict between living wills and healthcare proxy,
the importance and significance of recent wills, amongst others.
P19. Involving people with dementia (Saturday, 12 October, 11.30-12.00,
Verdala)
P19.1. Learning Together – The Alzheimer Society of Ireland experience of establishing the
first Irish Working of People with Dementia
Dooley Avril, Crean Margaret
This presentation will outline the Alzheimer Society of Ireland experience of establishing the first Irish
Working Group of People with Dementia. The purpose of the Working Group is to explore ways to
promote and encourage the direct involvement of people with dementia in our work and to ensure that
the voice of people with dementia influences the public policy that impacts on their lives.
The establishment of the Working Group comes at a crucial time as Ireland prepares to develop a
National Dementia Strategy. It will be critical that the voice of people with dementia is heard through the
National Dementia Strategy and in the planning of service provision for the future.
The establishment of the Working Group is the result of many years of work to enable the voice of the
person living with dementia and their carer throughout our organisation. The work has included a major
public awareness and anti-stigma campaign which promoted the early signs and symptoms of dementia
in order to encourage people to seek an early diagnosis.
This presentation will outline the learning that we have had from setting up the Working Group to putting
the plans in place and the outcomes from the meetings that have been held thus far. This presentation
will be of interest to those who wish to establish a more empowered voice for people with dementia in
their organisation and also those that want to hear more about how other countries promote the direct
involvement of people with dementia.
P19.2. “There’s a life for us, if we risk it!” Is a diagnosis of dementia a risky business?
Osborne Sally
This paper is a review of the literature as part of a longitudinal PhD research study exploring the nature
of risk with persons with early stage dementia. Risk is a concept used in dementia research when
examining choice and decision-making, and is primarily a negative phenomenon associated with danger
and hazard. More recent theory acknowledges its dual nature -the idea of ‘good’ and ‘bad’ risk. A
diagnosis of dementia puts a person’s fundamental rights to take a risk in question, which is often
withheld or withdrawn if the person is seen as vulnerable - but who decides? Vulnerable groups in
society have reported being so protected from risk that the protection itself paradoxically can become a
source of harm. Support then, for people with dementia predominantly involves aversion to risk because
of the concern for safety, protection and liability. This risk averse support comes at a cost however as it
infringes upon the autonomy of people living with dementia. Beauchamp and Childress (1989) see the
recognition of the right to take a risk as inherent in the principle of respect for autonomy, and this may
come to mean the autonomy to take, or not to take a risk. In her firsthand account of dementia, Morgan
(2009) says that vulnerability is the greatest risk, as it places oneself more at risk from society.
Risk is being used in this study as an exemplar to view autonomy and rights, the right to independent
action taken with free will and choice, when that is possible. It begins with the premise that risk is a part
of life for everyone, and the dignity of risk, or the right to failure remains central to growth and the
development of resilience. A cohort of younger people with a diagnosis has led to a greater focus on the
person with dementia, and developing supportive and proactive care practices that meet their needs
calls for knowledge produced from their own perspective. This review has important legal, ethical and
moral implications for dementia care and practice, and immediate and significant implications within the
daily life of a person with an early diagnosis of dementia. Morgan (2009) says ‘there is a life for us, if we
risk it’ (p. 28).
P19.3. Don’t try and take over! Everyday decision making for people with dementia and their
family carers.
Tarzia Laura, Fetherstonhaugh Deirdre, Nay Rhonda
Being able to make choices and decisions is considered an integral component of autonomy and
personhood in Western societies. For people living with a diagnosis of dementia, however, it can be
difficult to remain involved in decision making. Not only do they have to contend with the effects of the
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disease on their cognitive abilities, but their participation in decision making can be curtailed or ignored
by health professionals, family members, or paid carers. While these ‘others’ may be well meaning they
often presume that they know what is in the person with dementia’s ‘best interests’ without asking them
directly, or assume that the person with dementia is incapable of making rational choices. Contrary to
this, research has consistently demonstrated that even when a person with dementia may not be able to
make high-stakes financial or medical decisions, they can, and do continue to make choices about many
aspects of their everyday lives if provided with the right encouragement and support.
At present, a gap exists in the knowledge base with regards to understanding the importance of
everyday decision-making for people with a diagnosis of dementia. We have little insight into what
decision-making means for them and little understanding of the lived experience of how a dementia
diagnosis can impact on how, and if, they participate in decision-making. Furthermore, the informal ways
in which family carers can support and facilitate decision making for people with dementia is poorly
understood.
This paper will report on the findings of a qualitative study that used hermeneutic phenomenology to
explore the meaning of everyday decision making for people living with dementia and their family carers.
Data from semi-structured interviews with people with dementia living in the community and their family
carers will be presented, highlighting the importance of remaining central to decision making, and the
key role that subtle support from carers can play in enabling this.
P19.4. More participation for people with dementia
Jansen Sabine
During the last years the German Alzheimer Association has run some projects to support participation
and inclusion of people with dementia.
The first project cooperated with community houses ("Mehrgenerationenhäuser") that offer different
activities for all generations. Deutsche Alzheimer Gesellschaft has supported those houses to start new
activities which improve the inclusion of people with dementia and their caregivers. Examples were
Alzheimer Dance Cafés, common activities of children and old people, mixed activities for everybody
and special proposals for people with dementia
and/or caregivers.
A second project started in September 2012. Main aims are to increase the number of groups for people
with early dementia and to improve communication between them. These groups may participate in the
activities of Alzheimer Association and support their public relations activities with (political) statements,
presentations on conferences etc. Additionally information material will be developed in easier
languages that are better understandable for people with dementia.
P19.5. Tales of the sea: engaging people with dementia in maritime archaeology
Cutler Clare, Palma Paola
Maritime archaeology is a vital part of the UK’s national heritage that people with dementia are often
excluded from accessing. The Tales of the Sea project has delivered a series of interactive, educational
and stimulating maritime archaeological sessions for people with dementia, which aimed to provide an
opportunity for access and learning around the history, discovery and recovery of the UK’s maritime
archaeological heritage.
The sessions have mimicked processes which are followed by field archaeologists and have included
activities such as:

Interacting with archaeological artefacts (for example pottery and wood)

Conducting a maritime archaeological excavation

Processing of artefacts (collecting and ordering artefacts found from the excavation)

Reconstructing artefacts (putting excavated artefacts back to their original state)
This presentation will report on a pilot study that has evaluated the above initiative and discusses how to
engage people with dementia with non-conventional topics such as maritime archaeology. This will
provide inspiration to others to try ‘new’ activities that are stimulating and educational for people with
dementia. This novel intervention is an innovative demonstration of ways in which people with dementia
can be stimulated and engaged in culture and history in a way that is meaningful to their locality.
P19.6. The biomedical concept of disease of Alzheimer’s disease generates from a patient
perspective a cleft between diagnosis and the life with dementia
Kristensen Fritze
Introduction: Nationally and internationally there is a focus on the importance of diagnosing dementia
syndrome. The used diagnostic criteria for Alzheimer’s disease (AD) reflect a biomedical concept of
disease. The biomedical viewpoint becomes clearer with the inclusion of criteria for pathophysiological
changes referred to as biomarkers in the proposed revisions of the diagnostic criteria. Existing research
has identified limitations to the biomedical approach. This study is grounded in the continuation of this
research by incorporating the concept of disease.
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Purpose: To explore if the diagnosis of AD in early stage has a form and a specificity which allows the
person with dementia an optimal use of the diagnosis in his or her life practice.
Theoretical framework and methods: Humanistic dialectical perspective focused on the relationship
between impairments of neurological functions - and the experience of living with AD. Critical
psychology. An approach where the person is understood as pro-active, as a subject. Concepts make it
possible to direct focus at, for example: preserved - and impaired personal action potency and action
possibilities, self-understanding, living – and participating in changing contexts. A philosophical personoriented, relational concept of disease. AD is viewed and thought of from two different standpoints: 1) a
biomedical perspective, and 2) the person with AD – his or her experiences of challenges in the conduct
of life, where relationships and possibilities of actions are in transition. Focus is confined to: creating
knowledge of the perspective of the person with AD.
Design - qualitative longitudinal study: Semi-structured interviews. Included: 1) 5 persons diagnosed
in a Department of Neurology, with AD in mild to moderate degree, 2) one of each person’s relatives.
Documents – the persons’ medical records: Focus: documentation of AD including the management of
diagnostic criteria.
Results: From the perspective of the person with AD – the diagnosing based on a biomedical
understanding of disease implies: 1) Clarification: a diagnosis. 2) Focus: cognitive impairments. 3)
Abstract knowledge: Test results, “AD”, “progression”, “medication stabilizes”. 4) No recognition of wellpreserved acting potencies. These results are critical because the person with dementia and the
relatives: Actively re-establish the conduct of life, but the diagnosing does not support them herein.
Thereby rehabilitation is privatized, which may worsen the person’s symptoms.
Conclusion: One possible foundation for a modified understanding of AD in early stage - is a diagnostic
examination based on an interdisciplinary collaboration with increased integration of the persons (and
the relatives) experiences, based on a person-oriented relational concept of disease, using a social
psychological perspective - critical psychology. Persons diagnosed with AD are offered a form of
investigation which forms the basis for developing a rehabilitation plan based on his or her goals, values
and well kept abilities. Such a plan may support the person with AD his or her (and the family members
and health professionals) understanding - and management of AD in their conduct of life. This study
indicates that such a practice may dissolve the person with dementia his or her experience of a cleft
between diagnosis and life with AD.
P20. Malta Dementia Society (Saturday, 12 October, 11.30-12.00, Pinto)
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Poster Presentations
PO1. Poster Presentations - Integrated Care – Friday, 5 October
PO1.1. First national longitudinal study of care insurance and service provision for people
with dementia (2002-2012)
Leners Jean-Claude, Rausch Nathalie
In Luxembourg, since 2001, people with dementia can apply for specific services through the care
insurance system, either at home, in day centres and/or in long term care facilities.
The criteria to be able to access to these specific services will shortly be reviewed as some changes
appeared over the last decade.
The estimated number of people with dementia in Luxembourg is a little above 6000 actually. Of these
4200 were receiving services in 2010.
The total number of people with care services increased by 101% in 10 years, whereas the number of
people with dementia was higher by 86%.
Mean age of people with dementia is 83 years now, compared to a mean age of 73,1 for all other
diagnosis. Persons above 80 years are diagnosed with a dementia for 48%. Ladies with a dementia are
overrepresented: 72% of all persons with a dementia, but for all other diseases they count for 66%.
Of all the persons with a dementia and care services, 60% are living in facilities.
The total amount for all services was more than 416 millions of Euros in 2010; 74,2% are dealing with
persons who got a diagnosis of dementia.
The mean hours for activities of daily living allocated through care insurance is 14 hours per week, but
this amount is nearly doubled for the beneficiaries with a dementia.
A complete detailed comparison between the people with a form of dementia and all other persons with
a disease will show the big differences as well at home as in institutions, and this over the 10 year’s
period of the survey.
PO1.2. Low-threshold support services for community-dwelling people with dementia in
Germany – Volunteers turning into professionals
Hochgraeber Iris, Bartholomeyczik Sabine, Holle Bernhard
Background: Volunteers are an important resource to support the care of people with dementia. The
German social care system provides group- or individual services at home. Those volunteers receive a
training and are supervised by professional health or social care workers. The study NisA-Dem
investigates low-threshold support services. This presentation focuses on the perspectives of volunteers
and providers regarding the role and status of volunteers in those services.
Methods: In an explorative cross-sectional study we used quantitative (standardized questionnaires)
and qualitative (interviews and group discussions) methods. Data analysis was performed using
descriptive statistics and a qualitative content analysis.
Results: We obtained 92 questionnaires, 4 group discussion and 4 interviews. The volunteers’
employment status differed: Only 50% of the people were in fact honorary engaged, the rest received a
regular salary. Furthermore, reasons to be voluntary engaged were seeking for a meaningful activity and
personal benefit. Volunteers perceived their engagement as their job. For the providers it was important
to guide and supervise the volunteers by giving continuous and comprehensive training.
Conclusion: In general, volunteers seemed to have a high identification with their engagement and it
seems to be an important part of their life. Some service providers prefer a traditional voluntary
engagement. In contrast, others head for a certain professionalization of the volunteers to generate a
more structured and continuous services provision. This will be an issue to be discussed in further
(policy) discussion in Germany.
PO1.3. Alzheimer's caregivers health status in agriculture-related population of Brittany
(France)
Goarin Hervé, Morvan Patrick, Michel Olivier, Somme Dominique
The French national agricultural social security service covers pensions and health expenses for active
and retired farmers and agriculture-related employees, i.e. 595.000 people in Brittany (western France).
The study: to analyze the health-related resources consumption of spouses/care-givers of people with
Alzheimer's disease
Method: The regional database was checked to obtain study population. Spouses/care-givers in this
study had to be covered by the same social security service and live at the same address. Study
population was defined by reference to Alzheimer's diagnosis or the prescription of a specific drug. Co-
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morbidity of people and health status of spouses/care-givers was established through payment
exonerations and drugs consumption.
Results: 4 112 people are known to have Alzheimer's, 953 men (mean age: 81.4) to 3159 women
(mean age:84.3). Only 29% (1196) are currently married, 2509 (61%) widowed. People psychotropic
drug consumption : SSRIs(4.3%), hypnotics(3.84%), benzodiazepines(3.78%), anti-convulsive(2.40%)
other anti-depressive (2.35%) anti-psychotics(0%). Spouse/care-givers health status: among the 1196
married patients, 457 live with their spouses. 322 care-givers (only 3 women) have serious affections.
179 (58%) have severe cardio-vascular problems and 87 (27%) have cancer. 369 care-givers(78%)
benefit from paramedics interventions. 12% receive psychotropic drug, mostly hypnotics and
benzodiazepines.
Conclusion: Discussion will emphasize on specific drug prescription, high rate of cancer in care-givers
and the low prescription of psychotropic drug in this agriculture-related population
PO1.4. Accompanying card for older person staying at home : Coordination, prevention
and education tool for accompanying and allowing older persons being active
Closon MC, Praet JP, Zamora C ,Caty M, Mormael M., Baeyens JP
Introduction: A survey leads among elderly and/or persons with or without dementia showed that
older people who stay active within their immediate environment, use a social network or services, look
for and establish progressively solutions, seek for assistance when dependence or cognitive problems
are appearing, have more chance to stay at home. Prevention seems to be primordial.
Method: The project leaded in a commune of Brussels with medical and social actors aims to develop
an accompanying card for older people, which encourage them to prepare actively their “ageing well’.
This card is proposed to all older persons by the medical (hospital, medical doctor, nurse) and social
actors of the commune. In a similar size and attached to the ID card, the accompanying card has to be
filled in with the older person or caregivers and include the following information:

The private address of the older person, in case she is lost or has an accident or an emergency
hospitalization;

The coordinates of her general practitioner: It is useful to encourage the elderly to have a
general practitioner for the medical follow-up but also as a “spoke person” with other medical
doctors in case of an hospitalization;

The name of a close person to contact in case of an emergency;

A referent person to whom the elderly says her wishes in case she is not able to express them
by herself (aggressive therapy, …)

The name of 4 persons or social services allowing her to stay at home. This aspect allows the
elderly to be aware of the importance of building a network.

The contact name of a person within the commune who eventually knows the older person but
has also a good knowledge of the resources available within the commune.

A “free/blank” space where the older person can write her wishes
Results: This card is nçw used by all medical and social actors in the commune. It proved to be useful
in case of loss, cognitive problems, accidents or hospitalization, when the older person is not able
anymore to provide the information.It facilitates the information and coordination work with the older
person , for example to prepare her return at home after an hospitalization. Collection of useful
administrative data becomes prevention and education tools.It allows the older person to build
progressively her aging and to keep a control on her choices, particularly in the choice of the
stakeholders, the close contact or the referent person.
PO1.5. One day school about dementia caregiving
Cvetko Tatjana
Background: Involving persons with dementia in organized care is often discussed at the meetings of
selfhelp groups. Besides payment and transport the caregivers also need to overwhelm the concerns
about separating patients from home enviroment when deciding to include patients in organized daily
care program. Organizing one day school for patients and caregivers to learn about dementia and
demonstrating in the practice the way of living in daily care centre seemed to be the best solution.
Aim: To overcome the stigma of leaving home enviroment and integration the persons with dementia in
organized day-care for the first time.
Method: Two parallel parts of program were performed separatelly. One part with physical activities
and occupational therapy was dedicated to patients with dementia who come from home care.
Meanwhile another part was organized for caregivers and social workers – it included lectures about
dementia and caregiving.
Results: 10 patients with dementia, who attended the organized care for the first time, spent very
exciting day playing with ball, exercising, performing tasks with a trained dog, making boats out of carton
and singing. 38 caregivers attended the lectures about dementia, communication and home care,
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listened about succesful ageing and cognitive trening and concluded with relaxing workshop of smiling
therapy. Closing program with selfservice pancake party for all and singinig was the final treat of the
school. Video for educational purpose was prepared.
Conclusions: Demonstration of living with dementia in daily care was a great experience for organizers,
patients and caregivers. Annual meeting is an opportunity for new members to learn about dementia
through demonstration in real life which brings new perspective in developing dementia care in
community.
PO1.6. Effectiveness of a newly created curriculum for caregiver intervention in
Mecklenburg-Western Pomerania
Kilimann Ingo, Schwarz Sabine, Luplow Maik, Greve Ute, Hoffmann Wolfgang, Teipel Stefan
Introduction: Almost 70% of people with dementia (PWD) in Germany are cared for at home by a
family caregiver (CG). Often CGs at the beginning of the disease have little information about disease
course and upcoming difficulties; they are at risk to get overstressed, the likelihood of a nursing home
admission of the PWD increases with the burden of care for the CG. Previous studies on CG
intervention including education, training, support or counselling showed a reduction of CG burden,
improvement of CG well-being and delayed nursing home admission. However, the implementation of
CG support and education in the real world care system, especially in demographic focus region such
as rural areas of Mecklenburg-Western Pomerania (MV), is still little understood. Here we show the
feasibility, implementation and effectiveness of a CG education in heterogeneous contexts of care in
rural and urban areas of the German Federal State of MV. The CG intervention has been designed and
implemented in close collaboration between the German Alzheimer Association, Section MV, and the
DZNE Rostock/Greifswald.
Material and Methods: We conducted a total of four independent CG education courses (two in rural,
two in urban areas) with eight modules each led by a trained nurse. A total of 39 CGs completed the
course. Modules included information on the symptoms, the course and the causes of dementias and
specially of Alzheimer’s disease, exercises for the management of challenging behaviour, social care
and legal matters.
Results: Our modular curriculum fitted needs and expectations of CG as noted in baseline
questionnaires. Over 80% of participants wished to receive education on the disease, counselling on
disease specific problems such as challenging behaviour and legal affairs. Many CGs did not have
enough information on the disease and available formal and informal resources of support. Postprogram evaluation showed very high rates of satisfaction with the curriculum. The results were
consistent across rural and urban settings.
Conclusion: CG of PWD often have not sufficient information about specific sources of support. They
wish to be better informed, but also want exchange among other CGs and hands-on training on coping
with challenging behaviour. Our curriculum fits the needs and expectations of CG in rural and urban
areas of the demographic focus region MV.
PO1.7. Multimodal nondrug therapy on dementia symptoms in nursing home residents with
degenerative dementia in Thailand
Chankrachang Siwaporn, Singhanetr Sasiwimol
Objectives: To determine the effect of multimodal, nondrug therapy on depressive symptoms in Nursing
Home residents with degenerative dementia.
Design: Observational study in one nursing home in Chiang Mai province.
Participants: nursing home residents with primary degenerative dementia (Mini-Mental State
Examination score < 24).
Intervention: The intervention comprised three components: motor stimulation, activities of daily living,
and sensory stimulation.
Measurements: Overall geriatric symptoms were recorded using the Nurses' Observation Scale for
Geriatric Patients, ADL functional independence using the Barthel Index, and caregiver evaluation.
Results: 38 were included in the intention-to-treat analysis At early at 1 week, results of the per-protocol
analysis (n = 37) showed improvement of the caregiver happiness index. The total care time per case is
also reduced.
Conclusion: As early as 1 week the multimodal intervention improved behavioral symptoms in nursing
home residents, especially in social behavior and IADL capabilities.
PO1.8: Correlation of depression in elderly with Alzheimer dementia without family support
in social institution-nursing home Pristina
Drevinja Fahri, Haxhibeqiri Shpend, Fanaj Naim, Halilaj Gani, Anita Mulolli, Haxhibeqiri Valdete, Gjon Preci
Introduction: Depression is very present in elderly and especially those without family who live in
institutional conditions. Alzheimer's dementia is present in our environment, especially in an
environment of elderly care.
55
Aim: Recognition of depression presence in the elderly without family support in-social institution of
elders in Pristina and correlation of depression with Alzheimer Dementia in this sample. Description of
clinical cases with Alzheimer dementia.
Methodology: It is a type correlation quantitative study. The sample is resident in the nursing home of
Pristina. It applied Beck Depression Inventory and the Geriatric Depression scale. Then each resident is
undergoing fundamental questions about depression in a clinical interview are also assessed the
presence of psychotic symptoms. Data were analyzed with SPSS 14 program and Microsoft Excel.
Results: After viewing of all cards of residents in Institution-nursing home in Pristina (n = 83) was found
that 55 of them have psychiatric diagnoses. 14 cases were diagnosed with Alzheimer's dementia (in our
sample shows that these people have enough flow progrediente). According to all residents BDI resulted
in a depression level (over 17). There is no significant difference in the presence of depression in other
cases compared to those with Alzheimer's. In 5 cases psychotic symptoms were also recorded. Geriatric
depression scale showed a positive correlation with BDI.
Discussion: The depression of elders without family care who live in institutions should be easier, but
certainly the lack of support and family warmness make depression more visible, maybe more
hardened. Then the tradition of our families that the elder must be taken care in houses and for them the
new generation must take care of them makes their condition even harder. This means the anxiety and
depression symptoms are emphasized and it passes on somatic sickness.
Conclusion: All nursing home residents have depression. Here we have psychiatric and somatic
comorbidity expressed by depression in the elderly. Despite optimal treatment with Alzheimer our cases
seem to have enough flow progrediente.
PO1.9. Population based norms by age and education for the MMSE. Ilion, Helioupolis
Municipalities Hellenic Study (Il.Hel.M.Hel.St.)
Solias Andreas, Skapinakis Petros, Degleris Nikos, Pantoleon Maria, Politis Antonis
Introduction: For the last 38 years, Mini Mental State Examination (MMSE) has been widely used as a
dementia screening measure in everyday clinical practice as well as in both cohort and cross-sectional
studies. Its validity and reliability for the Greek population has explicitly been documented. However, the
effect of age and education on the subject’s performance makes it necessary to reckon them in the
estimation of the “cutoff score”.
Purpose: To estimate the prevalence of dementia in Greek population and determine the “cutoff score”
by age and education-corrected norms.
Methods: Cross sectional study of 630 patients older than 55 years, who live independently in Ilion and
Helioupolis Municipalities.
Results: 27.3% of the subjects tested in the study were diagnosed with memory disorder according to
their MMSE scores and the validation for the Greek population. The effect of age and education to the
subjects’ performance was statistically significant (p=.000). The use of standard “cutoff score” was not
proved to be useful for the personalized interpretation of the results, as documented by the fact that
older individuals with lower education had a poorer performance relatively to younger, highly educated
subjects.
Comparatively to the group age of 55-60 years, the odds ratio after the age of 75 years varies from 2.58
to 4.91. Regarding the variable factor of education, the odds ratio for the first degree education
graduates decreases from 1.43 to 3.19 for the third degree education graduates in comparison with the
group of illiterates.
Conclusion: The use of the “cutoff score” algorithm and the simultaneous estimation of age and
education effect on MMSE score may prove useful for the proper evaluation of MMSE performance.
According to the age and education of examine candidates in the community and the primary care, we
propose the use of the 25th percentile as a more useful cutoff score in order to decrease the false
positive results.
PO1.10.The utility of cognitive tests in predicting safety to drive in people diagnosed with
dementia
Vella Kristina
Introduction: The utility of cognitive tests in predicting safety to drive in people diagnosed with
dementia is well-established. However, there is still no consensus on which tests are the “gold standard”
in predicting driving ability.
Objectives: To carry out a systematic review on the recent literature examining the neuropsychological
tests that are associated with driving ability in individuals with dementia.
Method: A literature search of a number of electronic databases including Medline, PsycInfo and
EMBASE from 2005 to 2013. This was supplemented with hand searching of relevant journals.
Results: Twelve articles met the inclusion criteria. The most routinely used tests yielded inconsistent
results. However, tests within the domains of attention and concentration, visuospatial skills and
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memory and learning were found to be most closely associated with driving ability. Three studies
provided cut-off scores for neuropsychological batteries they developed.
Conclusion: The results from this study confirm the findings of previous reviews. There is no individual
measure that can adequately predict fitness to drive in people with dementia. However, as evidenced in
recent studies a combination of tests tapping various cognitive domains is more accurate at predicting
ability to drive. In addition, the use of cut-offs in these studies is a very important step in this areas of
research as it improves the clinical utility of neuropsychological tests.
PO1.11. Dementia curriculum development in Nursing Baccalaureate Study
Naldahl Karin
Background: In 2009 the individual Member States within The European Commission were asked to
recognize Alzheimer’s Disease (AD) as a priority on the European public health arena and to compose a
European Plan of Action for the purpose of improwing the research, prevention, treatment and
continuously support for patients with AD and their carers – to enhance quality of life for persons with
dementia. Several member states, including Denmark, have signed a National Dementia Activity and
Strategy Plan. In continuation of these strategies The Nursing School of Hjoerring, University College of
Northern Denmark, has worked with curriculum development in dementia care.
Purpose; Curriculum development: To initiate and improve second-year students’ professional
knowledge and personal attitudes towards persons with dementia and their families - in community
nursing care as well as in residential care.
Method: Systematic search for literature about stigmatizing attitudes among young nursing students
towards persons with dementia.The search also includes literature about learning activities which bring
aesthetic learning contents and processes in focus - and hereby challenge the negative attitudes
towards a more positive, empirically based approach to dementia care.
Historical reading of AD. AD as a conceptual term, as a biomedical and psychiatric disease with
aggressive behavior or as a neurological and age-related, chronic disease which calls for a person
centered care with rehabilitation in the family. As conclusion to this reading the theoretical platform for
dementia care in Hjoerring is outside psychiatry and inside the humanistic module of second year. A
module which integrates communication, psychology, pedagogy, nursing practice and meta theories –
and offers nursing students a platform to catch dementia illness from the perspective of patients and
families, bridges the gap between person and disease and incorporates altruistic values in dementia
care.
Classroom teaching follows a didactic, relational model. Aesthetic learning contents and processes
including use of narratives, are highly in focus. Compulsory student group work finishes classroom
teaching – to improve students’ ability to identify nursing problems and strengthen their academic
argumentation.
Results

Two (of many students’ statements) catch the learning process “Dementia care is much more
complex than I thought” “I have never been aware that I can make the person’s illness worse”

The clinic nurses states that our students’ interest in dementia care has improved - in community
nursing care as well as in residential care.

A Danish poster version won the annual poster prize, Danish National Knowledge Center of
Dementia, 2011.
PO1.12. Singular and socially oriented group living for persons with dementia vs traditional
nursing home- a pilot study
Span Ursula, Span Edith, Auer Stefanie
Introduction: The appropriate stage specific care of Persons with dementia (PwD) in institutional
settings is becoming a specialty and specific knowledge is required. Creative and affordable ideas for
optimizing the quality of life for PwD, the care team and the involved relatives are now needed. In the
development of new concepts, the appropriate balance between physical/medical care and social care
concepts seem important. There is some evidence in the literature that small-scale and homelike
facilities with a socially oriented care concept may be a more appropriate living environment for PwD. In
this pilot study we compared a newly developed socially oriented group living environment in which care
is only provided on demand with no organizational connection to an institution (singular) to traditional
care environments.
Methods: In this longitudinal observation design, PwD residing in the group living were matched to PwD
in traditional care environments. All persons are assessed at baseline, 3 month and 6 month. A follow
up observation after 6 month was set up. As main outcome variables, Quality of life (QOL-AD; Person
with dementia version) was chosen for the PwD. For the care team, the main outcome was Work
Satisfaction and a global measure of change (CGI), for family members, QOL-AD (family version) and a
CGI was used. The pilot study started in July 2012 and will end in July 2013.
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Results: 36 PwD in the different stages of the disease were recruited. Results of the study will be
presented at the meeting.
PO1.13. Dementia Service Centers in Austria: A comprehensive Support Model for Persons
with Dementia and their Carers
Auer Stefanie, Span Edith, Reisberg Barry
Objectives: Early disease detection and early treatment are prominent goals for improved Quality of life
(QoL) of PwD (WHO 2012). Traditional medically oriented structures often do not meet the needs of
PwD and their family members for post diagnostic support and treatment. Providing low threshold longterm community services for Persons with dementia (PwD) promoting independent functioning of PwD
and supporting caregivers could be a possibility to reach this goal and work against the exclusion of
PwD from our societies and reduce stigma attached to this disease. The Model of the Dementia Service
Centre (DSC) was developed for this purpose.
Methods: The team of a DSC consists of social workers, psychologists and specially educated trainers.
Firstly, persons are welcomed to the structure and receive information about the service provided.
Persons with memory dysfunction are screened by a psychologist and referred to a medical specialist
for medical diagnosis. PwD are offered a stage specific training either in group or single sessions at
least once per week for 2-3 hours and caregivers are offered teaching modules, support groups and
individual counselling sessions. Close to the community actions (festivities, dances, and lectures) are
taken to promote inclusion of PwD and their caregivers into the community. In order to reach as many
affected families and the general population, actions are taken to work against the stigmatization of
PwD. The main outcome goals of this treatment model are early disease detection and the prevention of
premature institutionalization of PwD. For caregivers the main outcome variables are caregiver burden
and depressive symptoms. A longitudinal database collecting disease related variables, social variables,
organizational variables and caregiver variables was created.
Results: 6 Dementia Service Centres (DSC) were established throughout the county of Upper Austria
since 2002. The feasibility of all treatment elements for the structure is established. About 80% of
persons treated in this structure receive a medical diagnosis during their treatment in the DSC.
Conclusion: The model of DSC has been successfully established and is well accepted by the
population. The program is funded by the County of Upper Austria.
PO1.14. What influences place of care and death of people with dementia? A systematic
review of qualitative evidence
Gysels Marjolein, Johnston Bridget, Bausewein Claudia, Petkova Hristina, Shipman Cathy, Fliss Murtagh
Objective: Planning for quality care in terms of access to services and preferred place of care and
death needs to build on best available evidence. We systematically reviewed qualitative evidence on
preferences and factors influencing place of care and death for people with dementia.
Method: This is part of a large systematic review on place of death for patients with non-cancer
conditions. Six electronic databases, reference lists, cited references were searched. Original studies
relating to people with dementia, in all languages, study types and publication status were included.
Study quality was assessed with a standard scale. A narrative synthesis was conducted.
Results: 12 qualitative studies relating to people with dementia were identified, and 3 other studies
reported on mixed samples, including people with dementia. The studies investigated issues of: 1.
Hospice care: access to hospice care was problematic. Hospices were poorly attuned to dementia care.
2. Home care: One study showed the necessary conditions that make home care possible for people
with dementia. 3. Entry into care homes: diverse and difficult decisions for families precede placements.
4. Decision making: the strongest theme was the emotional burden of end of life decision making.
Preferences were not necessarily consistent with carers’ values, who received little support in their
caring role.
Conclusion: Advance care planning is crucial in achieving preferred place of care and death for older
patients and those with dementia. Preferences and factors influencing place of care/death were
complex, influenced by families’ needs, and frequently evolved over time.
PO1.15. Where do we start with the improvement of care for frail, older people: action points
from the Dignity Network Group
Gysels Marjolein, Cohen-Mansfield Jiska, Achterberg Wilco, Husebo Stein, Husebo Bettina
Objective: European governments are now preparing for the predicted increase of care needs at the
end of life. Meanwhile, quality of care for frail, older people remains poor in practice. We aimed to
identify priority areas for the improvement of care for frail, older people and the actions required to
achieve this.
Method: An international meeting was organized and participants were selected from an expert network
of care for frail, older people. The workshop consisted of presentations on priorities from multiple
country and disciplinary perspectives with a focus on Europe, and structured group discussions.
Analysis applied standard qualitative techniques.
58
Results: The workshop comprised 20 participants from 9 countries in Europe and Israel. They identified
priority areas on:
5.
A conceptual level: a. raising awareness to the importance of quality care for older people, and recognising
staff’s competence; b. developing new care models based on systematic evidence and accurate definitions.
6.
A practical level: a. providing care with special attention to access to care, support for care workers, and
reduction of regulations; b. facilitating living conditions with available medical provisions in place, avoidance of
transfers, personalized care, regard for families and expertise of care for the dying.
They identified mechanisms to increase quality care through structural changes requiring education to
raise the level of expertise in caring for older people, and communication between the different parties
involved (public, policy-makers, family, staff and family).
Conclusion: This meeting identified the limits of current care practices in long-term care and explored
the potential for change. Collaborative initiatives between policy, practice and research were planned to
realize the conceptual changes which are the driving force to raise societal awareness and achieve
changes in the daily care for older people.
PO1.16. Designing for dementia
Boon Jon
The presentation will describe the process of designing and commissioning Hammerton Court, a new
£13.5m Dementia Intensive Care Unit for the Norfolk & Suffolk Mental Health Trust at the Julian Hospital
in Norwich, which was completed in March 2012. The project won the Constructing Excellence ‘Project
of the Year’ and ‘Innovation and Collaboration’ categories in 2012 for the Eastern Region.
The unit was visited by Jeremy Hunt, the UK Health secretary, in October last year, his first official visit
outside London. In praising the design and facilities, he said that his visit was to learn from the positive
and innovative work at the unit to help people with dementia.
The £13.5m unit comprises 36 en-suite rooms in 3 wards, together with lounges, treatment and therapy
areas. It also houses the Norfolk Dementia Care Academy, which aims to be a centre of excellence in
training staff and carers to look after people with the illness.
Perhaps more than for any other building type, the environment and layout of a Dementia unit can
influence the health and well-being of the residents, and play a role in improving their level of care. The
presentation will describe how the design responded to the behavioural effects of Dementia symptoms.
The brief was developed using latest research and an intensive structured consultation process with
specialist clinical staff, existing patients and their carers.
Interiors are designed to retain a domestic feel, and each ward is grouped around an internal themed
courtyard. The presentation will describe how an attractive and stimulating internal environment aims to
improve quality of life for patients. Communal spaces are focussed towards sensory stimulation and
encouraging activities by residents, visitors and carers.
The design team worked with an Arts Coordinator to incorporate artwork by local artists. This ranges
from a large suspended mobile in the circulation ‘hub’, through murals, to sculptures in the courtyards
and photos on the walls.
The building is highly sustainable, achieving a BREEAM Healthcare ‘excellent’ rating. It has under-floor
heating supplied from ground source heat pumps; solar panels for generating hot water and electricity;
and a grass roof to attenuate rainwater run-off and enhance bio-diversity.
The scheme was designed using Building Information Modelling (BIM), utilising a collaborative 3D
parametric model, and the presentation will describe how this process can achieve improved team
coordination and design integration.
PO1.17. The Aloïs Network
Duval Philippe
The Aloïs label has been created to develop a network of shops, societies, NGO in different economic
sectors able to propose adapted solutions for people.with Alzheimer disease and their caregivers.
The origin of the project comes from an observation: when a family includes a parent with Alzheimer
disease at home, the situation becomes very quickly a syndrome of loneliness: stopping of social
activities, breaking of the family and relational circle, etc.
This situation has been well understood and included in the aims of the French politic in direction of the
Alzheimer disease, especially for the informal caregivers.
Among the effects of the breaking of the social link, we can see that the families loose the habit to go to
the restaurant, to go to the hairdresser, to go shopping. Among the reasons, we can mention the shame
to show the behavior of the person with Alzheimer disease to people who are not able to understand
what happens and who do not know how react. We can also speak of the stress of the person with
Alzheimer disease in such situations.
The objective of the Aloïs Network is to attribute to shops, NGOs and other partners, a specific Label
according to different criteria defined by a social and professional comity.
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These criteria include especially a specific training of a part of the employees of the structures
participating to the network.
The training developed for the employees lasts three days. It is shared between theoretical and practical
periods. It has been studied through a European experimentation simultaneously in France and in Spain
in the frame of the PROGRESS program. This experimentation has also shown important possibilities to
create jobs in the structures included in the Aloïs network.
The project has begun in the PACA region, in the south of France.
The results will be evaluated in December 2014.
Several partners are associated in the project: chamber of commerce , Alzheimer NGO, local
authorities, etc.
PO2. Poster presentations - Prevention – Friday, 5 October
PO2.2. Dissociative amnesia and dementia: Is there a link?
Staniloiu Angelica, Markowitsch Hans J.
Despite suggestions that chronic stress is involved in the pathogeny of dementias, no systematic studies
investigated the possibility of a link between dissociative amnesic conditions and neurodegenerative
dementias. In dissociative (psychogenic) amnesia, we and other researchers visualized functional
imaging changes in brain areas that are agreed upon to exert crucial roles in episodic-autobiographical
memory processing. Moreover, we and other authors identified a chronic course of the memory
impairments in a substantial number of patients with dissociative (psychogenic) amnesic conditions. In
some chronic cases of dissociative amnesia we noted a fairly stable course, while in other cases we
observed a progressive global cognitive deterioration. Several factors may account for the underinvestigation of a possible connection between dissociative amnesia and subsequent development of
dementia, as we will outline below. Dissociative amnesic conditions continue to be under-diagnosed and
even debated with respect to their pathogeny and diagnostic legitimacy. Systematic long-term
longitudinal follow-up involving repeated neuropsychological testing and functional and brain imaging is
missing in a substantial number of patients with these conditions. Most cases of dissociative amnesia
and fugue are diagnosed in the third to fourth decade of life. Partly due to a paucity of evidence-based
treatments for these conditions, a substantial number of patients with these conditions drops out from
treatment and ceases contact with psychiatric or neurological or memory rehabilitation facilities. There
may also be an underestimation of newly occurring or persisting dissociative amnesic conditions in
elderly, due to a tendency in medical and psychiatric field to attribute cognitive symptoms in older
patients to medical or more common psychiatric conditions. The search for a link between dissociative
amnesic conditions and dementia is without doubt a potentially interesting topic for future research,
which should take into consideration multiple variables, such as the age at the onset of trauma, gender,
the recurrence, type and severity of trauma, the presence of psychiatric and medical co-morbidity (mild
traumatic brain injury, obesity, cardiovascular status), pre-morbid personality characteristics (e.g.
neuroticism), genetic polymorphisms, educational and occupational attainment, cognitive reserve and
the progression of metabolic and microstructural brain changes.
PO2.3. Insilico Identification of suitable Antagonists for Glycogen Synthase Kinase (GSK3β) in Alzheimer’s Disease
Yellamma K., Praveen K., Peera K.
Alzheimer’s disease is the most common form of dementia. About 16 million people are suffering world
wide from AD alone and the number of AD patients is expected to increase three times by 2005. As the
disease progresses, the nerve cells degenerate and disappear gradually affecting all parts of the brain,
eventually leading to shrinkage of brain thus ultimately impairing the cognitive functions such as loss of
memory, Language, Orientation, and Judgment. AD is caused by the formation of beta Amyloid Plaques
and Neurofibrillary Tangles due to structural changes in Tau protein. Several recent studies have
implicated molecular and cellular signaling cascades of Serine Treonine Kinase and Glycogen Synthase
Kinase (GSK-3β) in pathogenesis of AD. GSK-3β plays an important role in the formation of
neurofibrillary tangles and senile plaques in AD through hyper phosphorylation of in microtubules. In
view of this, the present study focusses mainly on identification of GSK-3β inhibitors. The interaction
between GSK-3β and selected analogues has been studied with modern bioinformatics programs to
identify the best lead molecule, which strongly binds to the active site of the GSK-3β and inhibits its
biological activity. After analysis of our result, it has been observed that, among 27 Indirubin analogues
docked against GSK-3β, Isoindigotin and Indirubin-3-monoxime shoed best affinity against GSK-3β than
others. Among these two, Isoindigotin exhibited more drug likeness without mutagenic property with the
best biological activity. Therefore, it has been suggested that Indirubin analogues can be developed as
potential drug molecule for GSK-3β phosphorylation activity, which inturn controls the biochemical
process involved in formation of Neurofibrillary tangles responsible for manifestation of Alzheimer’s
Disease.
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PO2.4. Loss of cholinergic neurons of claustrum in Alzheimer΄s disease: a Golgi and
electron microscope study
Baloyannis Stavros, Mavroudis Ioannis, Baloyannis Ioannis, Costa Vasiliki
Background: Morphological and morphometric alterations have been described in the nucleus basalis
in Alzheimer΄s disease, resulting in progressive cholinergic deficit, which is associated with the decline
of the mental faculties of the patients. In the present study we tried to proceed to morphological and
morphometric estimation of the neuronal networks of the claustrum, which is also one of the cholinergic
structures of the brain.
Methods: This morphological study is based on examination of twenty brains obtained at autopsy as
soon as after death. Samples from the claustrun were excised and immediately immersed in Sotelo's
fixing solution and they were processed for electron microscope. The brains, which were processed for
the silver impregnation techniques, were remained for two weeks in formalin. Then the claustrum was
excised and processed for silver impregnation, according to rapid Golgi method. The morphological and
morphometric study was carried into effect in a Zeiss axiolab photomicroscope. The results were
correlated with relevant morphological and morphometric analysis of the neuronal population of the
claustrum of normal brains of the same age with the patients.
Results: The morphological analysis, revealed a marked change of the cytoarchitecture of the
claustrum of the patients suffered from Alzheimer’s disease. Loss of neurons and astrocytic proliferation
were very prominent phenomena. Numerous synaptic alterations concerning the dendritic spines of the
small round and elongated neurons were seen in electron microscope. Some of the synapses, which
remained still intact, contained limited number of round synaptic vesicles and demonstrated marked
alteration of the mitochondria. The morphometric analysis revealed an average neuronal loss of the
claustrum estimated approaching to 70%.
Conclusions: The above described morphological and morphometric observations, plead obviously in
favor of a substantial neuronal loss and synaptic alterations in the claustrum, a fact which eventually
increases the spectrum of the cholinergic deficit in Alzheimer΄s disease.
PO2.5. Angiotensin type Ia receptor deficiency ameliorates amyloid plaque formation
Zou Kun, Liu Junjun, Liu Shuyu, Matsumoto Yukino, Tanabe Chiaki, Maeda Tomoji, Michikawa Makoto,
Komano Hiroto
Alzheimer’s disease is characterized by cerebral accumulation of neurotoxic amyloid-β protein (Aβ).
Midlife hypertension is a risk factor for the onset of Alzheimer’s disease; however, it is largely unknown
whether blood pressure regulation is associated with Aβ production or brain amyloid plaque formation.
Activation of angiotensin type Ia receptor (AT1a) plays the central role in renin-angiotensin system to
elevate blood pressure in response to increased sympathetic nervous system activity, dehydration or
hemorrhage. Here we show that AT1a deficiency significantly lowers amyloid plaque formation in an
Alzheimer’s disease mouse model. We found that AT1a deficiency leads to decreased endocleavage of
presenilin-1, which is essential for γ-secretase complex formation and Aβ production. Furthermore, we
found that angiotensin II can enhance presenilin-1 endocleavage and γ-secretase complex formation
and then promote Aβ production. This enhancement involved activation of PI3 kinase and
phosphorylation of Akt. Our results suggest that environmental stresses or life style factors that
stimulate AT1a to elevate blood pressure might enhance Aβ production and amyloid plaque
accumulation, and contribute to the pathogenesis of Alzheimer’s disease.
PO2.6. Positive lysosomal modulator enhances clearance of toxic proteins in both
Alzheimer’s and Parkinson’s disease mouse models
Bahr Ben A., Ikonne Uzoma S.
Lysosomes are the cellular components involved in removing misfolded/aggregating proteins, but with
aging lysosomes become less effective. Age-related protein accumulation disorders including
Alzheimer’s disease (AD), Parkinson’s disease (PD), and other dementias, are suspected to involve
imbalances between protein production and protein clearance. Strategies targeting the lysosomal
system to enhance protein clearance are prime candidates for drug discovery efforts to reduce protein
accumulation pathology and prevent the onset of dementia. The positive lysosomal modulator Z-PheAla-diazomethylketone (PADK) enhances the trafficking and maturation of the lysosomal enzyme
cathepsin B, thus to elicit protective clearance of toxic proteins in the brain. A key pathogenic factor in
AD is the amyloid β peptide (Aβ), and cathepsin B was discovered to degrade Aβ42 via C-terminal
truncation and was effective at reducing higher orders of Aβ assemblies (Mueller-Steiner et al. 2006,
Neuron 51:703; Butler et al. 2011, PLoS One 6:e20501). Treating APPSwInd and APPswe/PS1ΔE9
mouse models of AD with PADK (ip, 18 mg/kg/d for 9-14 days) led to significant reductions in Aβ42
peptide in hippocampus, cortex, and other brain regions. Similarly, in the case of the A53T α-synuclein
mutant mouse model of PD, the administration of PADK led to reduced levels of α-synuclein in TX-100
extracts of spinal cord, brainstem, midbrain, as well as hippocampus. In both the AD and PD mouse
models, PADK-mediated protein clearance was found to be associated with improved synaptic integrity.
Synaptic pathology has long been considered the key event in age-related disorders that 1) leads to
cognitive deficits and 2) contributes to early, gradual changes that constitute risk factors for dementia. In
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the disease models, PADK treatment improved the levels of synaptic proteins well known for being
reduced with aging and in association with protein accumulation pathology. The evidence of synaptic
recovery through lysosomal enhancement indicates a link between lysosomal capacity and the
maintenance of brain function, providing a unique pathway to attenuate cognitive impairment and delay
the onset of dementia. The results support a plausible strategy to promote cathepsin B-mediated protein
clearance for a disease-modifying treatment of early and progressive dementia that often involves multiproteinopathy.
PO2.9. Emotional and motivational aspects of coping with dementia in parents or partners
De Andrés-Jiménez Elena, Limiñana-Gras Rosa María
The aim of this study is to investigate the relationship of expression and control of anger with the
motivational dimensions of personality and psychological adjustment, depending on the kinship.
Methods: 107 carers of people with dementia from different associations and day-care centers from
Southern Spain participated kindly in this study. Disecting the sample according to the relationship with
the person with dementia, there are 74 offspring (age: 48.11 years, SD = 9.09) and 33 partners (age:
68.76 years, SD = 6.2). These carers responded to the Millon Index of Personality Styles - MIPS, which
measures personality styles organized in three fields of action: Motivating Styles, Thinking Styles and
Behaviour Styles, also responded to the State-trait Anger Expression Inventory - STAXI-2 which
evaluates the experience and expression of anger.
Results: The results show, in offspring carers, direct significant relationship between control of anger
and motivational styles Pleasure-Enhancing and Actively Modifying of MIPS; and between the
expression of anger and the Pain-Avoiding and Passively Accommodating. On the other hand, people
who care for your partner with dementia, show significant direct relationships between control of anger
and Pleasure-Enhancing; and between the expression of anger and the Pain-Avoiding and Passively
Accommodating. Also, the results obtained in control of anger, show a significant positive relationship
with increased psychological adjustment in these carers.
Conclusions: The results of this study allow us to associate particular emotional anger management with
determining motivational factors regarding to the psychological adaptation to the situation of caring for a
relative with dementia. In this sense the control of anger seems to function as a protective factor that is
associated with more adaptive behaviors such as Pleasure-Enhancing, Actively Modifying, and in
general, greater adaptability and psychological adjustment. Carers, offspring or couples, who tend to be
more positive, energetic and see the positive side of life (Pleasure-Enhancing) show greater overall
control of feelings of anger. Also the offspring carers who try to transform their circumstances to meet
their needs (Actively Modifying), have more internal control of anger, ie use their energies to calm and
reduce anger as soon as possible. On the other hand, the general expression of anger seems to be
more present in carers that focus on problems (Pain-Avoiding). The offspring carers that adapt to the
circumstances around them without initiative to change (Actively Modifying), show greater repression of
angry feelings (Expression In). However, people who care for their partners with dementia in the same
way when dealing with situations, express their anger verbally or physically (Expression Out). The
findings provide valuable information on anger management for carers of people with dementia, which
can begin included in plans for both prevention and intervention to prevent carer burnout.
PO2.10. Ilion epidemic study: A new screening test for cognitive deficits
Solias Andreas, Politis Antonis, Laoutari Sophia, Degleris Nikos
Acknowlegments to Professor Constantine Lyketsos John’s Hopkins Medical School Baltimore USA for
his mentorship in the present study
The worldwide increase life expectancy makes more aged people vulnerable to some form of dementia.
Many elders facing memory problems avoid seeking help in early stages. The objective of this study as
to evaluate a new tool easy that can be administered by laypeople (e.g. senior center staff or caregivers)
screening for cognitive decline.
Method: This is an ongoing population based study in an urban area in Greece (municipality of Ilion). A
total of 331 community dwellers (55-85+years old) attending senior centers participated voluntarily in the
study and were assessed with Santa Sophia Test (SST), as well as the MMSE, 3MS, and CDT tests.
SST was developed so that it committed to be administered by laypeople and briefly assesses attention,
concentration, memory, orientation, as well as abstract and critical thought. The test administration
takes totally 6 minutes. At first we dictate the whole text (approximately 1’30”). After 5 min we demand
the elder to fulfill the blank spaces (20 words in 4min) of the story.
Results: Based on a 3MS score of less than 82, 46.3% of participants facing memory problems. The
corresponding percentage of individuals with impaired scores on the SST was 45%(<median 16). The
majority did not have significant difficulties in daily living activities or social interaction, suggesting that
they did not have dementia.
By estimating Pearson product moment, statistically significant correlations were found between MMSESST (r=0.464, p=0.000) 3MS-SST (r=0.487, p=0.000) CDT-SST (r=0.372, p=0.000). Receiver operating
characteristic (ROC) estimation of the SST’s screening value with other measures as gold standards,
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yielded sensitivity 80.8%, specificity 59.3% and AUC of 0.739 vs. the MMSE and sensitivity 70.3%,
specificity 72.3% and AUC of 0.761 vs. the 3MS and sensitivity 73.6%, specificity 57.3% and AUC of
0.733 vs. the CDT.
Conclusions: SST represents a useful layperson screening tool that can assist in detecting cognitive
deficits among the aged, including in individuals without dementia.
PO2.11. Α rare presentation of an a-synuclein A53T positive sibling of new Greek family
with severe cortical atrophy and elevated total-tau protein
Bougea Anastasia, Paraskevas Georgios, Kapaki Elisabeth
Background: An A53T mutation of the α-synuclein gene (SNCA) is characterized by an early-onset
establishment of the full-blown clinical picture of parkinsonism with rigidity, bradykinesia, L-dopa
responsiveness and occasionally cognitive decline. We describe a new sibling of Greek kindred who
carried an A53T mutation and predominant dementia.
Case presentation: The propositus a 31-year-old man from Patras, Greece presented with a year
history of executive dysfunction, resting tremor, progressive gait instability with falls, mild short-term
memory problems, and urinary urgency . For the last two months he has been treated with levodopa
with moderate improvement. On examination he was alert and exhibited hypomimia, hypophonia,
cogwheel rigidity, hyperactive deep tendon reflexes with flexor plantar responses and eye lid opening
apraxia. His gait was shuffled with short steps and lack of recovery on pull test. Both vibration and
position senses were preserved. Neuropsychological assessment revealed a mini-mental state
examination (MMSE) score of 18. Brain MRI identified a pattern of global brain atrophy. DaTSCAN
revealed significantly reduced uptake of dopamine transporter in the right caudate. Cerebrospinal fluid
analysis showed elevated total-tau protein while CSF β-amyloid(1-42) and phospho-tau protein were in
the normal reference range. An α-synuclein A53T mutation was detected in the SNCA gene.
Conclusion: Epidemiological data on A53T positive patients are limited so far to fewer than 30
multigenerational PD families worldwide. Previous studies have showed that MRI scan was generally
normal and only in one report a mild cerebral atrophy was described in a patient in older age.
Information regarding CSF biomarkers are lacking. To our knowledge this is the first study that reports
elevated CSF total-tau protein levels in an A53T- positive affected member.
PO2.12. Meeting the needs of rural caregivers: The development and evaluation of an
Alzheimer's care-giving series
Chankrachang Siwaporn, Tongsong Worawan, Tamprawate Surat,
Sasiwimol
Nadsasarn Angkana, Singhanetr
Care giving for demented elderly is challenging. On a daily basis, managing the patients requires
balancing illness needs with day-to-day tasks. Caregivers generally begin care giving without any
information or training. To meet the needs of caregivers of demented elderly patients, we developed a
first 12 week caregiver series training program for caregivers since March 2009.Twenty trainees entered
the program. The evaluation of the training course was excellent except the period of training. They
mentioned that 12 weeks was too long. So we then implemented the second training course and
adjusted the duration to be 5 weeks. First four week was for the class room study and one week was
for the field work. From 31 January to end of February 2012 ( 5 weeks) Thirty five participants were
included. After completion the training the evaluation from the participants showed that they gained
more knowledge about care giving and felt more comfortable in their care giving roles. After 6 months
we then re evaluate the training again. More than 50 % of the trained caregivers who had gone to work
have found that 5 week duration was not enough. They need longer period of field training . The
optimum time for training course is still to be determined.
Conclusion: After two trials of training course for caregivers the optimum time for training couse is still
inconclusive. So the third training course will be implemented again in June 2013 we then extend the
course duration to be 10 weeks : 4 weeks for theory and 6 weeks for field work.
PO2.13. How much are support services worth? The case of Informal caregivers of care
recipients with Alzheimer’s Disease in ICS-HIS French panel data.
Gerves Chloé, Bellanger Martine, Ankri Joël
Objectives: Support and services to informal caregivers have been shown to alleviate caregiver’s
burden of caring and to be cost-effective. This work reports a research carried out in France, which
aimed to assess the relationships between caregiver’s willingness to pay (WTP) to be replaced and their
needs for support and services.
Data & Methods: The data used stemmed from two representative national surveys conducted by the
French National Institute of Statistics (INSEE) in association with the French Ministry of Health in 2008:
the Informal Caregivers Survey (ICS) and the Health and Impairment Survey (HIS). Contingent valuation
method was used to approximate the monetary value of informal care. After forgoing observations with
missing values, we ran our model on 193 informal caregivers of people with Alzheimer’s disease.
Statistical analyses were performed using Heckman’s two-step estimation strategy
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Results: Informal caregiver’s WTP is influenced by the need for care training (p<0.01). Caregiver’s
health conditions related to care such as depression and anxiety disorders also affected their WTP
(p<0.05). Providing day and night supervision to care recipient (p<0.01) and caregiver’s income also
affected their WTP (p<0.05). Sensitivity analysis qualified these results for gender and age. gradients.
Discussion: Public investment for supporting caregivers in different ways is required to implement
efficient policies since decision makers rely more and more on informal care as the most important
source of care for Alzheimer’s disease patients
PO2.14. The analysis of online support groups for Alzheimer's disease caregivers
Mojs Ewa, Grobelny Bartosz, Samborski Wlodzimierz
Both emotional and physical demands faced by Alzheimer's disease caregivers are very difficult to meet.
Often, the amount of strength and calmness needed to fulfill the role of caregiver is beyond the person
adaptability. Is the person taking care of the sick for many years or is he just trying to cope with the new
requirements of the situation in his life, he is always trying to gather knowledge about the disease and
methods of functioning. Due to the low amount of professional websites providing important information
about disease, caregivers associate through message boards found across the internet. They exchange
experiences, share advices, form support groups and help the newcomers.
Sometimes illness of a person close to us make us feel lonely. Such people seek contact with others
that are in a similar situation. They believe that other caregivers are better in understanding their
problems, because they also face similar challenges every day.
In this paper, we try to show the picture of the environment, that can be seen all around the web. We
analyze support groups remedies they use, and emotional functioning. By presenting recurring problems
regarding diagnosis, burnout and coping with daily stress, we try to answer important question: what
must be done to meet the needs of caregivers presented via the message boards. We are trying to
prove that access to professional knowledge and presence in the environment that brings together
caregivers can significantly improve level of performance and satisfaction. Even if the aid is granted only
through an online platform of information sharing, the suport effects are clearly visible.
The presentation is supported by EU – AAL programme “Understaid - a platform that helps informal
caregivers to understand and aid their demented relatives”
PO3. Poster presentations - Dementia-friendly society – Saturday. 12 October
PO3.1. The Fox Valley Memory Project: Creating a Dementia-Friendly Community in the U.S.
McFadden John and Susan
This talk (or poster) will describe the vision, mission, and goals of the Fox Valley Memory Project
(FVMP), a multi-faceted approach to creating a dementia-friendly community in northeast Wisconsin
(USA). Our vision for the FMVP is to make quality of life measurably better in our community by easing
the fear and isolation associated with dementia, and by increasing access to the resources people need
to live well with dementia. Our mission is to collaborate with other organizations to offer programs and
services for persons with dementia, as well as their family care partners and friends, and to encourage
practices of hospitality and inclusion that make our community dementia-friendly. To that end, we have
established memory cafes in 5 locations in our region; three of the cafes meet twice monthly and two
meet once a month. Our Care Partners Welcome Center functions as a drop-in site for care partners to
get information, become connected to community resources, and receive support for responding to care
challenges. The Welcome Center also sponsors a volunteer group for men with dementia who want to
work on projects that will benefit the community. We are working with Goodwill Industries on outreach
to local employers to educate them about dementia and to provide vocational support and guidance to
diagnosed persons wishing to remain employed. Another FVMP component is community education;
we have sponsored large community talks as well as Clinical Medical Education programs for
physicians. We are conducting research on many aspects of the Memory Project, including assessing
community knowledge about dementia and the physical and social components of our memory cafes.
We actively reach out to long-term care residences in our community, primarily through encouraging
staff training in creative engagement activities. We plan to launch a memory assessment center in
August, 2013. Our presentation will describe our philosophy of collaboration with government agencies,
foundations, and not-for-profit as well as for-profit organizations.
PO3.2. Dementia friendly community pharmacies – building participatory networks for
community-based care
Plunger Petra, Tatzer Verena, Heimerl Katharina
Background: People with dementia and their caregivers are regular users of community pharmacy
services. However, so far only a few pharmacy-based initiatives have focused on their needs apart from
medicines management. Based on Palliative Care and Health Promotion principles, the project
“Dementia friendly community pharmacies. Community-based health promotion for people with
dementia and their caregivers” aims at transforming community pharmacies into dementia-friendly
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settings supporting dignity and quality of life of people with dementia and their caregivers. Applying
principles of community based participatory health research (CBPHR), people with dementia and their
caregivers, community pharmacists and health care and community partners will be involved in reorienting community pharmacies (von Unger 2012, Plunger & Heimerl 2012).
Research Questions and Methods: CBPHR is linking research and interventions, and calling for a
cooperation of community partners, professionals and researches, ultimately aiming at creating relevant
knowledge for transforming health care practices and settings. The following questions are guiding the
partnership-building process: Who are relevant partners/communities to be involved? How can all
relevant partners be involved equally? What are experiences and expectations of people with dementia
and their caregivers regarding community pharmacies? How do community pharmacists conceptualize
re-orientation of pharmacies? To facilitate participation and grasp various perspectives, interviews, focus
groups and a needs assessment using appreciative inquiry are being carried out. Transdisciplinary
working groups will be organized to develop interventions and community-based projects. Furthermore,
all partners participate in relevant discussions and decisions via involvement in project bodies – the
steering committee and advisory group.
Results and Discussion: Involvement of relevant partners was conceptualized as gaining interest from
professionals - pharmacists, other health and social care practitioners, and community partners – people
with dementia and their caregivers. So far, the project succeeded in building partnerships with Alzheimer
Austria, a self-help group, community pharmacies and their professional body and health promotion and
palliative care organizations, who all provided rich input for the design of the project. Already at this
point, differing perspectives on caring for people with dementia and their relatives in pharmacies
became visible, which may be framed as problem-based vs. person-centered. First results from the
ongoing needs-assessment will be presented and implications for further cooperation and development
of interventions will be discussed, as well as potentials and challenges of CBPHR.
PO3.3. Master course for dementia studies at the Danube University Krems, Austria
Auer Stefanie, Span Edith, Adler Christine, Brainin Michael
Success in improving the quality of life of persons with dementia and their caregivers are facilitated if
knowledge from different disciplines is integrated. All relevant disciplines have to work together on this
important task. There is a serious gap between scientific knowledge and knowledge in practice
environments such as hospitals, nursing homes, care environments and the decision making
governmental agencies. We developed a curriculum with the intention of covering most of the specialty
areas in order to improve the interdisciplinary knowledge of the different participating professionals. This
curriculum is organized within the postgraduate teaching concept of the Danube University and it
consists of elements of basic biological knowledge about dementia, diagnostic criteria, pharmacological
and nonpharmacological treatment concepts, and stage specific care and treatment concepts.
Methodological knowledge such as statistics and basic scientific knowledge is part of the course
curriculum in order to assist in making international scientific literature accessible. The students are
stimulated to practice scientific writing and they are required to formulate a master thesis. The duration
of the course is 3 years. The teaching language is currently German. The course was initiated in 2009
and there are 50 students enrolled from different European countries such as Italy, Switzerland,
Germany and Austria. The course includes an international faculty. Successful participants have come
from various professional backgrounds such as medicine, psychology, social work, nursing, teaching
and law.
PO3.4. Journey of Care: World Alzheimer Report 2013
Wortmann Marc
Background: The World Alzheimer Report 2013 will be the fifth report of Alzheimer’s Disease
International published during World Alzheimer’s Month with the purpose of raising awareness about
Alzheimer’s disease and dementia and bringing policy issue into discussion.
Methodology: In this report, that will be published in the week of 21 September, we will do a systematic
review on the continuum of care for someone with dementia. It touches on the questions: what do we
mean by dependence (long term needs for care)? What is the relationship between disability and
dependence? What are the impacts of culture and systems (health, social and welfare) on dependence?
We will also look at the independent contribution of dementia to needs for care among older people?
How does that compare with that of other chronic health conditions? Why is the contribution of dementia
so considerable (how and why do needs for care in dementia arise, across the disease course)?
Another section will contain the Systems of Care, including the role of the family (informal) carer,
community assistance (homecare, nursing assistant, community meals), day-care and other forms of
respite, different models of residential care, end of life care and care and support after death
Finally, the report will also touch on Quality of care, and how it might be improved, costs of care and
examples from solutions in a number of countries from around the world.
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Results: Conclusion and recommendations will be available after 21 September, but likely touch on the
need for national dementia policies and plans, with provision for comprehensive continuum of care
meeting needs of people with dementia and carers, throughout the disease course
PO3.5. Changing definitions of end of life care: including dementia under its remit
Gysels Marjolein, Evans Natalie, Pool Robert
Objective: The terms used to describe care at the end of life (EoL), and its definitions, have evolved
over time and reflect the changes in meaning the concept has undergone as the field develops. We
explore the remit of end of life care as defined by experts in EoL care, from across Europe and beyond,
to understand its current usage and meanings, and we consider the implications of including dementia
care.
Method: A qualitative survey attached to a call for expertise on cultural issues in EoL care was sent to
experts in the field identified through the literature, European EoL care associations, and conferences
targeted at EoL care professionals. Respondents were asked to identify further contacts for snowball
recruitment.The responses were analysed using content and discourse analysis.
Results: Responses were received from 168 individuals (33% response rate), mainly from academics
(39%) and clinical practitioners working in an academic context (23%) from 19 countries in Europe and
beyond. 29% of respondents said explicitly that there was no agreed definition of EoL care in practice
and only 14% offered a standard definition (WHO, or local institution). 3% said that the concept of EoL
care was not used in their country, and 5% said that there was opposition to the concept for religious or
cultural reasons. Two approaches were identified to arrive at an understanding of EoL care: exclusively
by drawing boundaries through setting time frames, and inclusively by approaching its scope in an
integrative way. This led to reflections about terminology and whether defining EoL care is desirable.
Conclusion: EoL care’s remit is expanding, globally and in terms of timing and conditions. Including
dementia under its remit, raises questions both about the effects of EoL care on dementia as about the
consequences of dementia for the understanding of EoL care.
PO3.6. The impact of war and living with dementia
Cutler Clare
The impact of war experiences on the lived experience of dementia is currently unknown. Living with
personal memories of war is a reality for many (veterans, civilians, children, nurses). Prior research has
examined the relationship between experiences of war and post traumatic stress disorder, yet has
neglected the impact of war experiences on living with dementia. With the population ageing, the
number of people with dementia are expected to rise, and hence the issue of past war experiences on
the lived experience of dementia requires more attention.
This poster will report a review of the evidence that has linked experiences of war with experiences of
dementia, through three societal constructions:

Societal understandings of dementia

Societal understandings of war and conflict

Societal understandings of post-traumatic stress disorder
This doctoral work will work with people with dementia who have firsthand experiences of war, enabling
exploration into this gap in knowledge in dementia research. In grasping an enriched understanding of
past war experience and living with dementia, this project has potential to facilitate carers, family
members and medical professionals in tailoring the care they provide which will lead to greater quality of
life among people with dementia.
PO3.7. Lived experiences of caring for a family member with dementia in Malta
Spiteri Deborah, Zahra De Domenico Roberta
Dementia is an umbrella term referring to a number of medical conditions characterised by progressive
impairment of cognitive functions and includes loss of memory, difficulty in communication and
deterioration of executive functions. In Malta, care for individuals with dementia is mostly provided at
home leading to a significant physical and psychological burnout. The aim of this study was to elucidate
the experience of caring for a family member with dementia. Semi-structured interviews were conducted
with six caregivers in whom four were the children (three daughters, one son) with the rest being the
spouses (one husband, one wife) of a relative with dementia. The interviews were audio-recorded,
transcribed and analysed. The findings indicate that the caregivers’ life changed dramatically from the
moment their relative was diagnosed. Different factors determined why caregivers decided to pursue
this role and included family loyalty (obligation, commitment and duty) and reciprocity of care. With
disease progression, caregivers became fully immersed with their relative’s care, sometimes even at
their own expense, that they experienced a downfall in their overall quality of life. With time, they lived
through several kinds of losses with caregivers grieving mostly the psychological loss of their loved one.
Despite this hardship, caregivers managed to cope effectively and identified several positive aspects of
caregiving. In conclusion, this study continues to add on previous data on how family members cope
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with dementia in the Maltese islands and highlights the need of providing community care support in
various aspects of dementia management.
PO3.8. The Alzheimer Society of Finland urges Finns to TAKE CARE!
Erola Leena
In 2013, the Alzheimer Society of Finland raises awareness with the campaign titled TAKE CARE!
The campaign begun from a true recent story: a woman with Alzheimer's disease wandered outside her
home and got lost during a freezing winter day. She walked around for hours wearing only her
nightdress, but nobody stopped her and no one asked her if she needed help; unfortunately she died
later the same day in a hospital. Someone should have done something!
The Alzheimer Society of Finland wants to build a safer life for people with memory-related diseases by
raising awareness about safety issues as well as the basic human rights. The TAKE CARE! -campaign
is challenging all Finns to take care of themselves and the people around them. We all need each other
occasionally and no one should have to survive alone.
What the Campaign Will…

Make everyday life safer for the people with memory-related diseases

Raise awareness among Finnish people to take care of the people with memory-related
diseases.

Recruit you! Anyone can be part of the campaign and for example join as a volunteer MemoryFriend. Campaign is engaging a broad range of people and organizations, maybe also
including unusual allies, who can help make the case, generate public support, and build public
will.
Year 2013 will be filled with activities: The campaign has already begun and will run World Alzheimer’s
Day on 21 September. On 1st of February, The Alzheimer Society of Finland held a forum for policy
makers, member associations and the media in the Parliament of Finland, so called Little Parliament.
Take Care is a communication campaign which consist of several activities for example media events,
seminars, Facebook campaigns and other happenings. In addition, campaign will gather urgently
needed information about technological innovations, for example the use of technology or informative
mobile applications etc. that help to ensure a safer environment and maybe also more freedom for the
patient and for the caregiver. Campaign is executed in co-operation with the Finnish National Rescue
Association.
PO3.9. Quality of life in community
Bundaleska Olivera, Neloska Lence
There is period in human’s life when the spouse stays alone, after the death of his partner and after his
or her children leave the home to raise their own families. In most of cases, those persons are deeply
disappointed by the new circumstances which take away the simplicity from every-day life. Usually, they
can't manage the new life situation being unable to take care of themselves and they become deeply
depressed thinking that nobody needs them.Patients reaching for help in our institution, mostly come in
such a condition of deep depression, being obsessed by suicidal ideas, ideas of not being useful and
ideas of material collapse, overwhelmed by dissatisfaction with their destiny.In order to make their stay
more interesting and attractive, a working therapy and an occupational therapy is organised, of course
according their choice. This therapy is organised and conducted by working therapist. The patients are
working on various hand-made things such as knitting's of socks, sweaters, etc embroidering, making
various things out wood and straw. All these things produced, are than sold among the personnel of the
institution. Special attention is paid to their cultural and amusement life. Many dancing groups, famous
singers and children from the different school come to entertain the elderly. Religious and state holidays
are celebrated regular, as well.At meetings, besides the members, the Manager and an expertise team
of psychiatrist, psychologist, social worker, nurse, the work therapist are always present.With their
presence and active participation in the discussion, they give a huge contribution to the Club
meetings.Club meeting are of open type.All their activities above mentioned are extremely helpful in
keeping the patients fit and in avoiding the dark thoughts. The patients after they therapy are not longer
emotionally and intellectually destroyed and the will for life is brought back.
PO3.10. Enrichment cognitive strategies for brain stimulation
Karamberi Manto, Dalana Niki, Solias Andreas, Degleris Nikos
Background: Recent research suggests that psychological interventions have equal value with AchEI in
an holistic approach of dementia’s deficits. Especially in BPSD their implementation at first is usually
effective avoiding in parallel the drug side effects.
Objective: to examine and compare the effectiveness of psychosocial interventions in three cohorts at
the community: amnestic MCI individuals, early ALZ patients and moderate stage ALZ patients.
Methods and techniques: At first we use different tools according to each cohort based theoretically on
Cognitive – Behavioral Case Management approach. Reminiscence emotional therapy, Behavioral
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activation, Reality orientation therapy (ROT), Social skills training, Solving problems strategies,
Snoezelen formula, Aroma and music therapy etc are the most popular and efficient non
pharmacological treatments for individuals (45-50 minutes) and for group sessions (100 – 110 minutes).
The appropriate use of electronic devices (e.g. computers, GPS etc) is strongly recommended because
it enhances cognitive reinforcement and alternative functional adjustment depending on the case.
Results: The combination of ROT, music therapy, reminiscence approach and social – behavioral
activation improves the patient’s capabilities and delay the memory and functional decline.
Assertiveness training aims to reduce care – givers depressive mood and anxiety and high hopes for the
future.
Conclusions: The non – pharmacological interventions provide an effective tool in parallel with AchEI to
improve median temporal lobe deficits increasing at one hand the brain neuroplasticity and at the other
hand fight the diseases stigma.
PO3.11. Psychoeducation for caregivers of Alzheimer’s and related disorders patients
(cognitive – behavioral approach)
Solias Andreas, Karamberi Manto, Degleris Nikos
Scientific studies have shown that psychoeducational programmes improve the patient’s ability and
willingness to stay in long-term treatment, reduce readmission rates and ease the burden of care.
Self awareness, interpersonal learning and catharsis are basic therapeutic factors involved in group
process. Altruism, emotional re-experience of the primary family vibration and acceptance from the
group have been acknowleged as therapeutic factors but regarded as less significant.
Caregivers who participate in cognitive behavior groups favor of a better sense control for their lives and
also their environment (Hatzidimitriadou’s 2002). The ‘helpers therapy principle’ as described by Roberts
et al (1990), helps both, ‘transmitter’ and ‘receiver’, of the advice and makes compliance more effective.
In parallel practical - educational information and developing support system guide-lines supplemented
by written and other materials were demonstrably effective.
Understanding of the interaction between the person and his/her environment through reality testing
constitutes a key factor for cognitive and behavioral therapeutic techniques.
The holistic intervention aims to improve the quality of life of the patients and their families.
PO3.12. Photovoice projects: building blocks for a dementia-friendly society
Ataie Jutta E., McGovern Justine
Medical progress in diagnosing dementia has created a new experience of living with the illness. This
experience is no longer dominated by the final stages of the illness; rather, it is characterized by a
prolonged uncertain state of living with ongoing cognitive decline. This state can last for many years.
Research reporting the experience of this period of decline from the perspective of individuals with the
illness has attempted to shift away from a predominantly medical view of dementia. These studies have
informed our understanding of the psycho-social-spiritual experience of the illness.
However, both the scientific and the popular community have difficulties integrating this paradigm shift
and dementia continues to attract “the stigma of a psychiatric illness” (Benbow, 2000). Though progress
has been made in supporting older adults with dementia, much remains to be done to further integrate
this population into community life. This paper argues that research projects using photovoice
methodology can be a particularly powerful way of raising awareness about dementia in the community
by amplifying the voices of individuals living with the illness.
Findings from a photovoice project investigating the experience of early-stage dementia suggest that
through a process that involved taking photographs, small group discussions, photo exhibits, and
presentations, participants were empowered to develop positive perceptions of self and identify barriers
and facilitators to community integration. Although communities may have wanted to further integrate
older adults with dementia into community life, the photovoice project showed that the participants were
ill-served by existing support services. What emerged from the data was a need for support systems
that encourage active participation in illness self-management while acknowledging that well-being is
the reflection of a complex interplay between the person living with the illness, the illness symptoms,
and the external environment.
In summary, photovoice projects with their inbuilt research-as-empowerment orientation not only
increase our knowledge but are beneficial to the study participants and the community at large. The
presented project revealed that early-stage dementia was not an impediment to living life as fully as
possible; rather it was a lack of support services that hindered the participants. Possible avenues for
using photovoice projects to increase dementia awareness and community integration will be discussed.
PO3.13. Developing dementia friendly communities in Ireland
Dooley Avril
The Alzheimer Society of Ireland has recently embarked on the development of a new initiative within
the organisation - Dementia Friendly Communities. The initiative is focusing on improving the inclusion
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and quality of life of people with dementia and their families. We are working on building evidence to
inform the project through expressions of interest from communities across the country that wish to get
involved.
We envisage that each of these communities of interest will demonstrate a high level of public
awareness and understanding so that people with dementia and their families are supported to live well
and remain active in that community.
Through our dedicated Project Leader The Alzheimer Society of Ireland is offering guidance and
signposting each of these dementia friendly initiatives across Ireland. We are constantly developing the
information and resources available to assist them to develop and promote their community to be
dementia friendly.
We are also providing each community of interest with small scale financial support for local initiatives
that promote the inclusion of the person with dementia and their families in their communities. We hope
that these grants will assist the communities to identify and develop new and inspiring initiatives which
promote genuine inclusion for people with dementia.
Partnership is also a key element of the whole project and we are working closely with the Ageing Well
Network and Genio to promote the understanding and growth of Dementia Friendly Communities across
Ireland.
Some of the work that has been undertaken by the communities of interest thus far includes:
An awareness raising through primary schools in Co Donegal using the Dear Grandma booklet
A conference held in Co Clare to promote the involvement of young people (17-25) in our local services
and the community
The delivery of dementia awareness training to interested university students, community groups and
businesses
Grown the involvement of people with dementia and their families in the arts and cultural sector through
partnerships with art galleries and theatres.
PO3.14. The world’s biggest fundraising day for dementia
Garden May-Hilde, Frogn Sellaeg Wenche
Background: Since 1974 an annual telethon has been hosted by the Norwegian National Broadcaster
(NRK) in benefit of a cause promoted by an organization. This autumn, on 20 October,
100,000 volunteers will visit every household in Norway to collect money for the Norwegian Health
Association and their work to improve the lives of people with dementia.
Norway’s telethon is the world’s largest fundraising event, as measured by participants and money
collected per capita. This annual event has in total raised over $1 billion US (€700 million) for various
humanitarian organizations over the past 39 years. This is a huge amount, especially considering
Norway has only 5 million inhabitants. It is also a great opportunity to raise public awareness about
dementia through the national media. Norwegians can follow the event on TV as the state broadcaster
will have eight hours of coverage, including reports about people’s experiences of dementia and results
of the fundraising.
The telethon’s cause is chosen from applications every year by a committee. This year the Norwegian
Health Association – an interest organisation for people with dementia and their carers - will benefit from
the money raised. It is a voluntary organisation with more than 500 local branches which promote public
health and dementia all over the country. Its goal is to combat dementia and cardiovascular diseases
through research, information campaigns, preventative measures and lobbying.
Method: On the day of the telethon, over the cause of 10 hours, 100 000 volunteers will reach 1.7
million houses. To mobilize every community in this long country, schools, companies, labour unions,
sport organisations, and many more have their own arrangements and promote the cause through their
websites and social forums. It is a huge collective effort that Norwegians call ‘dugnad’, when everybody
does a little bit of voluntary work to ensure a huge amount of money being raised for a good cause.
The money collected helps fund measures described in the application for the telethon. The Norwegian
Health Association will use the money raised to do three key things: first, mobilise more volunteers so
that they can help improve the quality of life experienced by people with dementia and increase their
participation in society; second, increase information about dementia targeted at businesses, workers,
public services and people with dementia and their carers, and third, to build up an interdisciplinary and
co-ordinated research programme into the causes and treatment of dementia.
Conclusion: The world’s biggest annual fundraising event goes this year to the Norwegian Health
Association for their work on dementia. This will give Norway’s interest organisation for people with
dementia increased resources to help build a more dementia friendly society and fund research into
dementia.
PO3.15. Dementia friendly cities
Henry Sabine
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Context: People with dementia often have difficulties finding quality information in their own city. Yet,
this type of disease requires familiar references; these people need to be able to rely on someone who
comes from a similar background and who can provide them with specific, reliable information on the
disease.
Rationale: La Ligue Alzheimer is aware of these specific problems. The association’s ‘motto’ is ‘A.I.D.E.
près de chez vous’ (Help at your side) because la Ligue believes that most solutions can be found within
the surrounding background of people touched by dementia.
Several cities have expressed their need to be supported and accompanied in their willingness to
develop local activities without considerable expenses. With the ‘Dementia Friendly cities’ concept, la
Ligue Alzheimer has been able to meet these cities’ interests and financial limits.
Description: The Dementia Friendly Cities are a network of cities which hold and develop activities
related to Alzheimer’s Disease (training sessions ‘Circle of Care’; Alzheimer Cafés; home assistance to
carers;…) in consultation with ‘La Ligue Alzheimer. These activities must be free of charge.
The initiative’s objective is to encourage the integration of people with dementia within their community.
Each activity must contribute to an improvement of the quality of life of people with dementia and their
carers, a goal that has been set up on the basis of the World Health Organisation’s (WHO’s) Agefriendly Cities.
Achievements: This objective is stated on a Charter drafted by la Ligue and its partners since March
2011. The Charter specifies the sharing out of the tasks between each signatory.
A ‘Proxidem’ will be trained by la Ligue Alzheimer. This person will be a communal agent already
working in the field of health & quality of life, disability, and/or the elderly. The training session will be
free of charge.
Conclusion: With this initiative, la Ligue Alzheimer– representative of patients and their carers – proves
that the association is part of the solution and is able to find equal partnerships for people with dementia
in their familiar surrounding background.
PO3.16. Growing rural dementia friendly communities across the Scottish Highlands
Pascoe Ann
To show how one passionate campaigner inspired a group of like-minded people to turn their community
from one with little support to one that is fast becoming a dementia friendly community and also a
beacon of dementia excellence across the rest of the Highlands of Scotland.
How the concept was taken to a new level and a Social Enterprise was established with profits to be
reinvested into the community for the benefit of dementia families.
How the Social Enterprise’s work was informed by the people they set out to help and how they worked
in partnership with businesses, service providers, voluntary groups and individuals who shared their
ambition to create a dementia friendly community by:

Developing awareness programmes for stakeholders to help local communities become
friendly and fulfilling places for people with dementia and their families

Developing projects to increase local opportunities for people with dementia so that they can
take part in their chosen activities of life for as long as they wish

Increasing empathy and support for caregivers by speaking out about the practical and
emotional challenges they face

Challenging the myths and stigma associated with dementia by developing a series of
websites/social media to combat this

Overcoming funding challenges to achieve this .
And finally how the concept was taken to a new level with lessons learned taken across the Highlands of
rural Scotland.
PO3.17 The dementia friendly society in the Netherlands
Bruijs A., Meerveld Julie, Kimenai J.
How can we build a dementia friendly county?
Making live easier: As Alzheimer Nederland we asked our selves: how can we make the live of people
living home with dementia easier. To answer that question we start a small research. We found out that
we have a strong network in the Netherlands of professional healthcare. Care for people with dementia
is given in many professionals ways, by people with knowledge and skills about dementia. But we also
found a gab.
The gab: For a person with dementia it is important to participate in the society. Especially in the
beginning of the process. To be able to go to the gym, to go shopping, to visit musea, to get a taxi and
to visit a restaurant. But to do this it is helpful that others know what dementia is about and know how to
handle. In this we so a lack of information by many people and organizations in the civil society.
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What others do: In Germany and Belgium we so very interesting projects about teaching society about
dementia. In Belgium (Geel) a bakery provided breadbags with handful information and in Bruges they
started a dementia friendly street. Much of this work is done by the civil society for the civil society.
What does the Netherlands: In Brabant a provincial organization ‘de PG- Raad’ played an imported
role in this. They made the 10 aims of a dementia friendly society. Together with local governments,
social- and cultural organizations, information about dementia and it’s impact is given broadly. For
example on schools. In the Netherlands the Rabobank is starting to give information programs on there
employees. There is also a training program for taxi drivers. Alzheimer Nederland is collecting the best
practices projects and tries to stimulate others to follow, to make the live of people with dementia easier.
PO3.18. Partnership between Bistrot Mémoire and cultural disposals
Donnio Isabelle
The Bistrot Mémoire is born of the desire shared by both family caregivers and professionals to fight the
stigmatization around dementia and work towards changing the societal perception of the condition. It is
a place, a « café », « pub » (Bistrot), for people to share feelings, experiences and develop social ties
between people with memory troubles, Alzheimer disease or assimilated forms and their family
caregivers, one afternoon per week. Since we set up the first Bistrot Mémoire in Rennes, in January
2004, the concept, reproduced around 50 times in France, has been developed. We regularly introduced
different supports to enable the citizens to reconsider their point of view about these troubles and to
involve much more people with Alzheimer disease to take a real place in the community and participate,
as citizens, to social life and cultural activities.
Our new project consists in creating partnerships with cultural and artistic structures, both linked with a
“plateforme de répit”, one of the Alzheimer plan issue. The purpose is to give “good time shared” for
both caregivers and people with dementia. For example, spending an afternoon at the museum, often a
lost habit, by frighten, can become a new habit and a creative moment.
Thanks to the EFID workshop organized last year in Vienna, after the EFID award, we have been
encouraged in our project in the way it contributes to change the image currently conveyed regarding
Alzheimer’s and related conditions. We were invited to communicate differently on Alzheimer and similar
diseases, with a slogan “I am still the same person”. And we tried together to bring much more nuance
to the manner in which we communicate about these illnesses.
We began by testing, with the participants, the opportunity to propose a first visit to the museum in
discussing about “arts and emotions”. As they enjoyed to get involved in the project, and spoke a lot
about it in the meetings in Bistrot Mémoire, notably a man who talked about his difficulties to carry on
with creative writing, we introduce with him the idea of a writing workshop, a time to make fun of words,
to use “a word for another” or to experiment automatic writing as the surrealists.
Furthermore, we imagined together to collaborate with dancers and choreographers in a project of
choreography writing.
Our priority is always to get and give pleasure with the proposal for both people with dementia and
caregivers. And finally we are thinking about a film which would express, through these moments and
experiences shared, the capacities that can be preserved, developed and enhanced in such moments
and with such supports.
It is a moment of discovery that being ill does not impair feelings, that there is a lot going on inside each
person, it is a time when each person is recognized positively, tenderly by the other ones…
There are a lot of resources within each person: the Bistrot Mémoire enhances the expression of
everybody, ill person or ken, and can contribute to illustrate the slogan “I’m still the same person”.
PO3.19 Activities in public space and being a pedestrian goes hand in hand
Brorsson Anna, Öhman Annika, Lundberg Stefan, Nygard Louise
Introduction: Activities in public space are important for people with dementia. To walk is a common
mode of transportation and includes traffic situations. There is a lack of knowledge about problematic
traffic situations and how people with dementia meet these.
Objective: To identify problematic situations in crossing zebra crossings from photo documentation and
from the perspective of people with dementia. The aim was also to identify how they understand,
interpret and act in these problematic situations from their experiences and linked to photo
documentation.
Methods: It started with photo documentation comprising five film sequences of different zebra
crossings. The same film sequences were used in two focus group interviews with people with dementia
being pedestrians. The two data sets were analysed by a grounded theory approach and findings were
continuously compared to each other.
Results: Adding layers of problematic traffic situations to each other created problematic traffic
situations as a whole. The layers were layout and design of streets and zebra crossings, weather
conditions, vehicles and crowding of pedestrians. To meet different layers of problematic situations,
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informants used actions characterized by avoiding problematic situations, traffic light as a reminder and
security precaution, following the flow at the zebra crossing and being a cautious pedestrian.
Conclusion: The core, the hazard of meeting unfolding problematic traffic situations when only one
layer at a time can be kept in focus was characterized by difficulties to stay in focus and meet the
problematic situations as a whole when informants met one layer at a time.
PO 3.20. Pilot project for a dementia friendly commune
Closon MC, Praet JP, Zamora C ,Caty M, Mormael M., Baeyens JP
Introduction: In order allowing dementia patient to stay as long as possible, if they wish at home, it is
necessary to mobilize all potential resources available in the commune allowing a psycho-medico-social
support of dementia patient and their caregivers. It is also important to foster the ‘destygmatisation’ of
the disease and the patients within the professionals and the population environment. A pilot project is
lead since 4 years in St Gilles commune (Brussels) in collaboration with the local population and the
medical, social and cultural services of the commune.
Methods: Organization of pro-active trainings for all the personnel of the commune who is in contact
with older people (social services, police, neighborhood police officer, pension service) in order to
understand the Alzheimer disease and train them to accompany the demented patients;
Establishment of a “Alzheimer cafe” as a friendly place where people having dementia and their
caregivers can meet every month;
Forge personal and professional links between the medical (general practitioners, nurses, pharmacists
…), assistance (housekeeping, …) and social actors (social services, elderly care services, cultural
activities) in order to better respond to the needs (medical needs, dependence, solitude, insecurity)
encountered by older people having dementia and their caregivers. Collaboration has been
implemented between the different medical actors (medical doctors, nursing personnel, hospital,
pharmacists) and social services of the commune in order to foster, if necessary, the older person to
make a cognitive check-up within the geriatric service of the commune hospital (day care hospital). The
occupational therapist of this service identify with the older person the main problems met at home and
prioritize them according the emergency in finding a solution in order the older person to be able
staying at home. An occupational therapist belonging to the “Association Alzheimer Belgium” and a
social worker can of the commune, on the request of the older person or the caregivers, visit them at
home and discuss pragmatic solutions based on the commune resources. A monthly meeting can be
organized between the medical and social professionals in order to discuss concrete problems;
Establishment within the commune of a volunteer service to help people with dementia and their
caregivers in their everyday life;
Creation of didactic folders available in commune services, medical doctors/general practitioners,
pharmacist, associations, publics places, including information on condition on “well ageing” , the
Alzheimer disease, pragmatic recommendations when people have dementia, memory and orientation
problems, the resources available within the commune for older person having cognitive problems
(social, medical, financial resources, activities, transport, volunteering, ….);
Establishment of an accompanying card for the older person having dementia, in the same format as
the ID card, including his/her private address and the persons to contact (close contact, general
practitioner, nurse, neighboring, …) in case of a problem (orientation problem, accident, hospitalization,
etc., ...).
Actions lead by the pharmacists of the commune aiming to take the old persons with dementia out of
their isolation. The Alzheimer patient and their caregivers often tends to isolate and be isolated. The
pharmacist which whom they keep a contact for the renewal of their drugs prescription, can play a useful
role by advising them and transmitting information.
Results: This experience has proved that, much more then timely and heavy interventions, a long-term
action, supported by population and all the medical and social actors of the commune is necessary and
able to facilitate keeping at home the dementia patients and to support the caregivers.
PO3.21. Building a dementia friendly community in Motherwell town centre: Our story so far
Crockett Arlene
The National Dementia Strategy for Scotland (2010) outlined key priorities for improving the delivery of
care, support and treatment to people with dementia and their carers. A key challenge has been how to
deliver these improvements within the current financial context. The Scottish Government is working in
partnership with three Community Health Partnerships to demonstrate how systems can be redesigned
to deliver better outcomes for more people for the same resources. Each demonstrator site is working
on a range of initiatives towards this whole system redesign. As part of this change programme the
partners of North Lanarkshire Dementia Demonstrator site have been working towards building a
dementia friendly community within Motherwell town.
Partners from Health and Social Care, Alzheimer Scotland and other voluntary organisations have
adopted a community asset building approach, bringing together key stakeholders to enhance and
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improve awareness of dementia and build greater resilience within Motherwell’s community. Working
with local businesses and services, a key aim is building a better environment which enables people
living with dementia and their families to be full and active citizens within their community.
This presentation sets out the key stages of building a Dementia Friendly Community in Motherwell.
Firstly, the presentation explains how local stakeholders, including people with dementia and carers
were involved in planning. Secondly, the presentation outlines how the partners developed a toolkit for
local businesses and services and how we used a launch of the initiative to create awareness. Thirdly
the presentation evaluates the effectiveness of the initiative towards building a dementia friendly
community and the lessons that have learned. Finally the presentation considers the future plans to
ensure effective evaluation of the work to build a dementia friendly community and extend the work to
include all community resources such as transport, faith communities, and more.
PO3.22. Engagement in life style activities and difficulties to use everyday technology: a
study of people with Alzheimer’s disease, MCI and controls
Nygard Louise, Kottorp Anders
Background: While the requirement of essentially intact ability in everyday activities in Mild Cognitive
Impairment, MCI, has been discussed and challenged, there is still a lack of knowledge as to how subtle
activity limitations may be manifested and clinically detected. Recently, the use of everyday technology,
ET, has been proposed as a sensitive domain for detection of activity limitations in MCI.
Aim and methods: The aim of this study was therefore to investigate the levels and profiles in
engagement in lifestyle activities and the associations with perceived difficulty in ET-use in people with
MCI (n=37), compared to people with Alzheimer’s disease (n=37) and controls (n=44). Based on raw
data from the Frenchay Activity Index, FAI, a Rasch model was used to generate linear measures of
engagement in lifestyle activities. Analysis of variance, ANOVA, and differential item functioning, DIF,
were used in the analyses.
Results and conclusions: Significant differences in specific FAI items were found between groups,
showing a profile of decreased engagement in certain activities already in MCI. The stronger association
between activity engagement and perceived difficulty in ET-use in people with MCI and AD suggests
that ET may play a crucial role in facilitating or hindering these people to retain an active lifestyle over
time.
PO4. Poster Presentations - Innovation – Saturday, 12 October
PO4.1. Smart technologies for mobility of old
neurodegenerative disease. The MobileSage project
people
with
mild-to-moderate
Spiru Luiza, Solheim Ivar, Sterea Alexandru, Turcu Ileana, Simon Jordi Rovira and MobileSage Consortium
members
Background. Older adults are vulnerable due to various sensory, motor and neuro-cognitive changes,
as well as various illnesses, that may progressively alter the accomplishment of their daily tasks and
may induce social isolation and a poorer quality of life. Loneliness reduced communication and reduced
family or community support may trigger a specific deconditioning, in which the gradual reduction of the
ability to function and to get involved is an important component. The actual developments in the field of
ICT-based smart applications for the elderly are very promising as tools able to support old people for
preserving their skills and mobility and for compensating various functional impairments. The EU funded
project MobileSage deals with such a kind of support.
The project. MobileSage project develops a smart mobile phone application able to answer the indoor
and outdoor mobility needs of elderly and indirectly, to ease the tasks of their formal and informal
caregivers. Through a series of easy-to use, NFC or QR codes scanning function as well as cloud
services, the application may supply various information needed in the accomplishment of daily living
tasks, or spatial orientation and specific information needed when traveling locally or abroad, in
improved conditions of security. In one of the project’s pilots, beside old people with age-related sensory
dysfunctions the target group involved several end-users aged 77+/-9 years having mild-to-moderate
memory problems.
Lessons learned. Despite the fact that the acquaintance of old people with smart technologies is more
and more difficult as the aging progresses, only one person from the group of end users with mild-tomoderate memory problems definitely declared she dislike mobile phones. All the other people in this
group proactively participated in the project activities that involved them for the detection of their needs
and preferences, for the design of application interfaces, and for pre-prototype and first prototype
evaluation. They pointed out that as much as possible friendly interfaces, the easy access to various
functions of this application, the clarity of Instruction Booklet, and a good initial training with a human
assistant may enhance their patience to learn and their motivation to have such a machine at hand for
improving both their indoor activities and their outdoor orientation and navigation. Their most important
remark about MobileSage application usefulness for them included its capacitiy to provide essential
issues through its four main functions – scan, map, search and help, i.e. information about domestic
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robots operating protocols, about various services providers, remember medication time, appointments
etc., easy access to brain training games just existing on the market, preconfigured tracks to navigate
outdoor or to travel abroad, guidance to operate ticket machines and other travel information, easy get
help in emergency situations.
Estimated impact. Smart technology for assisting old people already proved its quality of a significant
answer to the challenges raised by global aging. Initially oriented to support people with physical
disabilities, actually smart devices providing ‘brain training’ games and other such virtual mental
stimulating or supporting products are in full development. The MobileSage innovative project may
equally play a significant role in the development of such applications. The services it develops: help-forself-help, support to resolve daily activities in an independent manner, to regain some skills in everyday
life, to compensate and to train mental skills, may be of high importance not only for people with special
cognitive needs, but also for the involved formal and informal caregivers.
PO4.2. The evaluation of a visual editor for carers of people with dementia in the design of
home based care
Nugent Chris, Hallberg Josef, Beattie Mark, Synnes Kare
The wide spread prevalence of mobile devices, the decreasing costs of sensor technologies and
increased levels of computational power have all lead to a new era in assistive technologies to support
persons with Alzheimer's disease. There is, however, still a requirement to improve the manner in
which the technology is integrated into current approaches of healthcare management. One of the key
issues relating to this challenge is in providing solutions which can be managed by non-technically
orientated healthcare professionals.
Within the current work efforts have been made to develop and evaluate a new software tool with the
ability to specify, in a non-technical manner, the rules governing how technology within the home
environment should be monitored and under which circumstances an alarm should be raised.
A user interface has been developed to support the selection of the technology to be used. In addition
the interface supports the elicitation of the conditions and rules which will govern and monitor the
technology to deployed within a person's home. The interface has been based upon the usage of visual
notations. The premise of this approach aims to exploit the concept that the designer of the rules which
govern the technology, namely the healthcare professional, will have limited knowledge of how to
configure and work with the technology based solutions, nevertheless will have the detailed healthcare
experience required to appreciate how the solutions should be used and under which conditions
abnormal behaviours should be identified. By using the visual notations a user can therefore create a
non-technical representation of how the assistive technologies should be used and under which
circumstances an alarm should be raised. The representation is subsequently processed and
automatically translated into a set of computational rules which can be used to configure a remote
management service.
To test the utility of the approach a cohort of nurses (n=10) engaged with the system. Each participant
was asked to undertake 3 tasks. In the first two tasks the participants were presented with two
scenarios, one related to the process of grooming and one related to the process of medication
management, and were asked to use the user interface and the visual notations to select the necessary
technology and to build the necessary set of rules to monitor if a person had correctly undertaken the
tasks. In the third task, each participant was presented with a completed scenario using the interface
and asked to describe what the scenario was representing. Following completion of the three tasks
each participant's solution was examined in addition to them completing a semi-structured questionnaire
to evaluate their experience in using the system.
When asked to evaluate their experience of using the system on a scale from 1 to 10 (with 1 being poor
and 10 being excellent) the average result from all 10 participants was 8.0. Participants were also
provided with the opportunity to provide free response feedback in relation to both positive and negative
elements in relation to their usage of the system. Consistently, positive feedback from participants
commented upon the ease of use of system in addition to its aesthetical appeal. Negative feedback
from participants was mainly found to be in relational to minor usability issues which will be addressed in
the next release of the software.
Overall, based on the evaluations undertaken, the software tool developed has proven its utility in
providing a means to allow non-technically orientated healthcare staff to describe the rules required to
manage technology within a home based environment. Results following the evaluations will be used to
guide the re-development of the interface and plans are currently under to conduct evaluations with a
larger cohort.
PO4.3. Cognitive Assistance to Support Social Integration In Alzheimer’s Disease
Koldrack Philipp, Luplow Maik, Kirste Thomas, Teipel Stefan
An active lifestyle with extensive social contact protects cognition of elderly people and is substantial for
quality of life. Communication and social interaction reduces the cognitive decline and delays
progression of neurodegenerative disease like Alzheimer’s disease (AD). However, maintaining social
contact proves to be increasingly difficult with growing cognitive impairment, and bears the risk of
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growing social exclusion. Orthotics for cognitive functions can support people with AD in processing
information and may help to overcome every day limitations. While each available system targets a
specific class of cognitive task, we argue for the special value of assistive technology supporting outdoor
mobility to create baseline requirements to enable communication and social interaction.
Employing application examples for existing technical solutions and systems described in the scientific
literature, we outline the necessary trade-off in system design between the needs for security on the one
hand and the desire for autonomy on the other hand. While maximum autonomy promises the best
performance in satisfying user wishes for support in target oriented outdoor mobility, and therefore
enables a more active lifestyle, it also requires a higher degree of user interaction. This might overtax a
person with increasing cognitive impairment. Pure security applications require less to no interaction,
enabling persons with dementia to walk around in the neighborhood but will not provide cognitive
assistance for target-oriented movement.
The goal for assistance systems should be a unified technical solution, by design taking the progressive
nature of AD into account. In each stage of dementia, the user then receives assistance according to his
current abilities in order to enable as much autonomy as possible. With our approach, we aim to bring
together an engineering point of view on providing technical solutions with a user-driven perspective on
needs and requirements for sustainable and sufficient support in social activities.
PO4.4. A self-narrative of life-long disability: A reflection on resilience and living with
dementia
Angus Jocelyn, Bowen-Osborne Sally
Illness such as dementia has particular linguistic and cognitive difficulties, not the least of which is its
depiction in narrative, which may not be taken seriously. This paper builds upon recently published
manuscripts, which describes a methodological approach to explore the ways in which the ideals of
Kitwood's (1997) personhood and narrative inquiry can be used to keep the person with a chronic illness
such as dementia ‘centre stage’ in their own life story narrative. By integrating a person-centred
approach to interpretative and structural narrative analysis, people living with dementia can be the
centre of their own story and communicate with their community what is important and why it is worth
telling. The aim of this paper is to utilise this methodological approach to explore the narrative threads
of a life-long disability as experienced by a person called Janet who lives with dementia. Janet’s story
locates disability not as personal impairment but within the social and cultural context of family and
religious life. This contributes to a better understanding of the links and contradictions between body
illness, self and society; in so doing, provides further insight into Janet’s enduring sense of self as she
embraced a more challenging journey along the pathway of dementia.
PO4.5. English Translation of an assessment for identifying triggers and causes of
dementia related challenging behavior - IdA
Holle Daniela, Zischka Matthias, Halek Margareta
Background: The Innovative dementia-oriented Assessment tool (IdA) guides nursing staff
systematically through the process of identifying possible triggers and causes of challenging behavior of
people with dementia. It was developed on the basis of an international literature study and the needdriven-dementia-compromised-behavior model (Kolanowski 1999). IdA was tested in relation to its
practicability, content validity and construct validity in different nursing homes in Germany (Halek 2010).
For its use in nursing practice, it is recommended as a guideline for team meetings and dementiaspecific case conferences (Halek and Bartholomeyczik 2009). So far, the use of IdA was limited to the
German context because of its restriction to the German language. The aim of the following study was
to translate IdA into the English language as a first step to make IdA available for its use in English
speaking countries.
Method: The translation of IdA was carried out according to the translation process of ISPOR (Wild,
Grove et al. 2005). IdA was first translated into the target language (English) and subsequently
translated back into the original language (German). Afterwards, the instrument was checked by two
registered nurses from England (Great Britain) for its comprehensibility and conceptual similarities
(cognitive debriefing).
Results: An English version of IdA is now available for use in nursing research and nursing practice. It
was of great importance that translators were informed about the underlying concepts of the
assessment and that each question of IdA was described in detail in a manual before translation took
place.
Discussion: The translation of IdA into English has to be understood as a first step within the
adaptation process of IdA for an English-speaking country. Further studies are needed to pilot IdA within
the specific context of the target population and to test its linguistic appropriateness as well as its face
and content validity. In addition, psychometric testings are needed that evaluate the scientific merit of
IdA in the target country.
PO4.6. “Creating an Opera” - an experimental therapeutic program for Alzheimer's Disease
Macedo Pedro, Brandão Luísa, Vale João, Kahrel Thomas
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Opera means work in Italian or task in Latin. “Creating an Opera” is an experimental therapeutic
programme developed for patients with Cognitive Decline Disorders. The subjacent concept is a
therapeutic intervention involving a great number of functions and systems, a more holistic approach
addressing the whole Person, calling on different disciplines and know-how. This offers the possibility of
creating a team in which each member is encouraged to contribute with his own tasks and expertise,
which may be related to personal life-long knowledge or new interests. The acquisition of new
procedures is also probable. There is a close correlation to a real-life working process encompassing
the idea of compromise, creativity, continuity, achievement and dependence between the members of
the work team.
The groundwork behind the patients' construction of an original Opera began with preparatory body
work, improving breathing and voice, musical training, the construction of the musical instruments,
dramatic expression, the creation of a narrative (the libretto) and characters, set construction and so on.
In conclusion there was a public performance that allowed for positively perceived self-efficacy.
This is a complex program that has been evaluated in different phases with patient assessment
demonstrating great benefits even in cases with severe cognitive decline.
This project was realised with the support of the Teatro Nacional de São Carlos (Lisbon National Opera
House).
PO4.7. The Therapeutic Use of Doll Therapy for People with Dementia: A Systematic Review
of the Literature
Mitchell Gary
Introduction: The use of non-pharmacological treatments for people with dementia is rising as
evidenced in reality orientation, reminiscence therapy, aromatherapy and music therapy (Holt et al,
2009; Vink et al, 2011 and Woods et al, 2012). There are a number of interventions available to assist
health professionals and carers with non-pharmacological treatment for people with dementia but not all
of these appear to be as rigorously researched as the examples above. The therapeutic use of dolls for
people with dementia is one such therapy that has limited empirical evidence, but is appearing to be
increasingly used in clinical practice (Stephens et al, 2012). Despite its increase in clinical practice,
there have been few empirical studies conducted and as yet no published systematic literature review
on its practice.
Results of Review: There were limited empirical findings pertaining to the therapeutic use of doll
therapy for people with dementia. Almost all of the studies reviewed commended the use of doll therapy
for people with dementia. Some authors asserted that engagement with a doll could lead to an
improvement of mood, a greater dietary intake, a sense of security and reduced levels of distress for a
person with dementia. Despite this cause for optimism a number of challenges were identified. These
included differences in the type of doll used and how to assess if a person with dementia would benefit
from use of a therapeutic doll.
Discussion: The theoretical basis of doll therapy is complex and arises from the work of John Bowlby’s
attachment theory (1969). Despite its importance there was limited reference to this in the vast majority
of the literature. As well as this there was limited consideration given to the obvious ethical dilemma of
providing a doll to a person with dementia which some believe can infantilize people with dementia
(Kitwood, 1997 and Mitchell and O’Donnell 2013).
Conclusion: Any therapeutic avenue that improves the wellbeing of a person with dementia is of great
value and importance to clinical practice. Doll therapy, however, requires close scrutiny and it should be
approached with some caution as its practice is still in its infancy.
PO4.8. Dementia in the elderly: Interventions diversified by competences. Educating to
recognize Emotions and Psycho-Physical Potentials
Bruno Patrizia , Pirozzi Mariacarmina, de Rosa Giuliana, Francone Caterina
Introduction: Progression and irreversibility of brain damage, typical of primary senile dementia, forces
us to detect early symptoms and to learn which the psycho-physical changes related to the disease
might be.
Continuous and prolonged support is needed, not only limited to medical care and pharmaceutical
drugs, but which instead takes into consideration all the other relational aspects such as the
implementation of interventions diversified by competences.
One common aspect in all the elderly suffering from this disease is weakness and their need for support
and empathy by those who take care of them, because a demented person, despite their difficulties and
communication problems, continues to have desires, emotions, ideas and thoughts that they want to
share with others.
Purpose: To provide the elderly affected by dementia the right tools to stimulate their remaining
physical, mental, emotional and communicative abilities.
To support and educate their families so that the latter can stimulate them in the home.
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In that case an Empowerment process was promoted, both as a tool and the purpose to reach a better
psycho-physical condition.
In the health environment, Empowerment is an educational process which consists in making the patient
acquire a series of behaviours and habits which help them to cope with their health problem.
It was considered appropriate to herewith mention the pedagogical objectives and the business plan
from the educational point of view, which integrated with the cognitive and motor ones, have allowed to
fully confirm the achieved results.
Material and Method: Activities of Pedagogical Competence: The meetings have been 7 and all based
on the set objectives. The group of 10 elderly was heterogeneous in the degree of pathology.
The first meeting was to get acquainted and create dialogue. It showed good motivation and a lot of
curiosity. A box full of antique and modern objects - which would recall their memories to a past and
present daily life - was emptied on the table. Each of them had to choose an object, so that they had a
clue to tell their story. In that way, it was possible to individually evaluate the degree of awareness about
present and past, the degree of memory and the degree of space-time perception.
Even the two elderly with the most serious pathology, despite looking passive and disinterested, reacted
positively to stimulus. One of the two, who was nervous and introvert, chose a violin among the objects.
He had a lot of fun playing it and he eventually laughed.
The other lady, whose brain damage has almost entirely affected her language, shook hands with the
educator and sang a classical Neapolitan song after choosing an embroidered handkerchief among the
objects on the table.
The second meeting focused its attention on mind-hand coordination and awareness of potential hand
mobility, through working with plasticine and simple woodworking.
For the third and fourth meetings, some art-therapy and music-therapy sessions were organized, mainly
relying on the fact that sounds, music and art are intense, multi-sensorial and motor experiences which
integrate with the person, regardless the anatomical-functional condition of the brain. To do this, of
course, help from qualified music therapists and art therapists was required.
For the fifth, sixth and seventh meetings, the activities were focused on mind-body coordination through
spontaneous dances and group games and on sensorial and memory stimulus through listening to live
music by two voluntary violinists.
Results and Conclusions: Great motivation in carrying out the proposed activities. Enhancement of
self-esteem. Greater ability to relate to the group. Improved motor ability, especially fine motor skills.
Recognition and expression of emotions.
PO4.9. Doll therapy: A therapeutic means to meet past attachment needs in a person living
with dementia: A case study approach
Bisiani Leah, Angus Jocelyn
There is overwhelming research evidence to suggest that emotional and stress-related behaviours are
considered one of the most difficult and frustrating challenges for the person living with dementia and
their caregivers― disturbing the quality of life for both. This paper builds upon a recently published
manuscript, which examined the therapeutic impact of the provision of a life like baby doll on the
behaviour of a person living with moderately advanced Alzheimer’s disease. Specifically, this single
case study assessed the potential benefits of the use of doll therapy in reducing behaviours of concern
such as anxiety and agitation that may be associated with observed attachment needs of a person living
with dementia.
The theoretical underpinning of this study was guided by the principles of person-centred participatory
research in dementia and social constructivism; whereby the researcher engaged with, and respected,
the ways in which people with dementia construct their multiple realities and their unique construction of
their behaviours with whom they interact. The study used both qualitative and quantitative research
designs and methodologies in data collection and analysis. The results demonstrated that doll therapy
was a positive intervention for this person living with dementia, where there was a significant reduction
in behaviours of concern related to the need for attachment and a considerable decline in levels of
anxiety and agitation. There were also unexpected benefits including improvement in social interaction
and communication with other residents and staff. This research supports doll therapy as a therapeutic
intervention that may be utilized within the ongoing care of some persons with dementia to meet needs
for attachment and to reduce behaviours of concern. Despite some controversy on this topic, it will be
argued that doll therapy should be considered as a therapeutic approach to further dementia care in
light of this positive outcome.
PO4.10. We need to find the balance between our increasing brain damages and our
improving wisdom and studying of tools
Kappéter István
I have had pseudo-hallucinations since 1995, which were not bothering me. I did not know that they
were the symptoms of Léwy brown body dementia (LTD).
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In March, 2005 I had an influenza with very high temperatures. I felt better soon after, but I and my wife
had to realize that I have got problems with thinking - my dementia started.
I do not become exasperated. As a follower of the concept of Hungarian special teachers and of
Dynamic Psychiatry I knew that even if we have handicaps we can live happy with them.
My wife is a professor of futures studies living with a handicap caused by poliomyelitis (Heine Medin)
since 1949, so she can help me accept my condition. She is my second wife. We met while working
together in her field of research. My first wife unfortunately died from a heart attack. I wrote a letter to my
wife on the first anniversary of our marriage, that we have to face a rather hard future. My specialist
friends also told her that her fate would be not easy. Her love is the most important reason that I am
happy, and I am able to take the medicines every day, and learn to compensate my losses.
I visited my friend who did the trials with the cholinesterase inhibitors in Hungary. He agreed and
showed me some AD patients in rather good condition, and sent me to my other neurologist friend, who
examined me and asked for an MRI and psychological examination. All the examinations proved that I
have a mild case of Alzheimer’s Disease. Since the fifth week after we recognized my mild dementia, I
have been taking rivastigmin (Exelon) every day. I can only recognize a very slow decrease in my
abilities. This is the second cause for I can compensate.
After the beginning of my treatment, I visited the founder and chairperson of the Hungarian Alzheimer
Association. She invited me to participate in this work. We meet regularly with the caregivers and people
with dementia where we try to help them to learn the best methods to handle this disease. Our
combined experience is the third important basis that I am able to be happy with LBD and AD and with
many other diseases.
I have been educated by good parents, step-parents, teachers in my schools and universities, and by
the heads and mates in my work-places, many friends and by my patients. I learned a lot in the practice
of the rehabilitation of mentally ill people, and by reading the literature and listening to the lectures at the
congresses about AD and of LTD.
I know that the reserve of our brains is very large. I have been able to find the balance between my
increasing brain damages and my improving wisdom and studying of tools.
PO4.11. Prescription Pattern of Chinese Herbal Products for Alzheimer's Disease in Taiwan:
a Population-based study
Shun-Gu Lin, Jung-Nien Lai, Sui-Hing Yan
Background: People use complementary and alternative medicines hoping that such therapy might
produce improvements in life quality, relieve behavioral and psychological symptoms, and maintain
memory. For further improvement of the Chinese herbal products therapy, the goal of presented
research was to analyze Chinese herbal products utility rate among people with Alzheimer's disease in
Taiwan.
Methods: We have included all people who were newly diagnosed with Alzheimer’s disease by boardcertified neurologists from a simple random sample of one million subjects among the insured general
population and the rate of insured individuals has been consistently above 96% since 1997.The usage,
frequency of service, and the Chinese herbal products prescribed for Alzheimer’s disease, among
people who were newly diagnosed with Alzheimer’s disease by board-certified neurologists, were
evaluated using a randomly sampled cohort of 1,000,000 beneficiaries recruited from the National
Health Insurance Research Database. The logistic regression method was employed to estimate the
odds ratios (ORs) for utilization of Traditional Chinese Medicine (TCM).
Results: The database claims contained information on 1137 people with Alzheimer's disease from
1997 to 2008. Among them, 889 (78.2%) Alzheimer's people used TCM outpatient services.
The present findings show that, among people with Alzheimer's disease, females and those aged 55-65
years were more likely to be TCM users than males and other age groups. The present results also
demonstrate that people with Alzheimer’s disease who are living in urban area and have developed one
or more behavioral and psychological symptoms of dementia were more likely to be TCM users than
living in rural area and no symptom group. Diseases of the musculoskeletal system and connective
tissue together with symptoms, signs, and ill-defined conditions were the two most frequent diagnoses in
the disease category for TCM visits. Furthermore, Alzheimer’s people tended to use Chinese herbal
products to deal with Alzheimer’s symptoms and side effects of anti-Alzheimer’s drugs.
Maziren-Wan and Bu-Zhong-Yi-Qi-Tang are the two most frequently prescribed formulae by TCM
doctors in Taiwan for treating Alzheimer’s disease.
Conclusion: Our results suggest that, based on the co-existence of both conventional and traditional
Chinese medical treatments, most people with Alzheimer's consume herbal therapies with the intention
of relieving their Alzheimer's-related symptoms, rather than because they have rejected standard antiAlzheimer’s treatments. Although some evidence does support the use TCM to treat Alzheimer’s
disease, the results from the current study may have been confounded by placebo effect, which
emphasize the need for well conducted, double-blind, randomized, placebo-controlled studies in order to
further evaluate the efficacy of Maziren-Wan and Bu-Zhong-Yi-Qi-Tang on Alzheimer’s people.
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PO4.12. Data Collection and Processing in Care of Persons with Dementia
Krupicka Radim, Viteckova Slavka, Szabo Zoltan, Vankova Hana, Jedlinska Martina, Holmerova Iva
Long-term nursing care for patients with dementia presents an important social, healthcare and
economic issue, especially with demographic changes and changing disease patterns (increasing
number of chronic disease patients). Despite ongoing modernization and quality improvement of such
care in the Czech Republic, the availability of an appropriate care for patients is still low. Collection of
data, which are necessary for appropriate planning and quality management of long-term care, is one of
the most important issues for the executive organizations – not only on account of the economic
purposes, but also for the social and demographic studies. These data analyze, for instance, selfsufficiency or frailty and their risk factors. The current practice for the data collection performed by the
long term care institutions is still usage of the paper surveys. Such methods are not only inefficient but
also inaccurate and homes for the future evaluation and storage of the data. The solution is a complex
software tool, which could be used not only for survey creation, but also for the storage and processing
of the collected data.
Our software was developed in cooperation with the Centre of Gerontology and CELLO Faculty of
Humanities, Charles University in Prague and consulted with the Czech Alzheimer Society. It consists of
two parts; firstly a survey designer which provides an easy-usable tool for the questionnaire creation,
print or export to the PDF format. Second part is a web-database system for data collection, process
and storage. The completed questionnaires are scanned and imported to the system which
automatically recognizes the data. The questionnaire can be also completed in a web form. In such way
are the data fully accessible for the users and can be easily managed and exported to various formats
by the scientists.
We aim to provide a „package of scales“ and a „package of criteria in care provision“ that will be easy to
use by the care providers; moreover, their automated processing by the software would make data
available not only for the clinical use but also (after anonymisation) for the organization of long-term
nursing care in our country.
This research project is supported by the grant NT11325 of the Ministry of Health of the Czech Republic:
“Long-term care for seniors: quality of care in institutions, organization’s culture and support of frail older
persons.”
PO4.13. Experimental Validation of the Therapeutic Game “CONEM-BETA” for Caregivers of
Persons with Advanced Alzheimer’s Disease
Poudevida Sandra, Ancizu Iziar, Gispert Juan Domingo, Aguilar Miquel, Lozano Manuela, Serrano Marcos,
Bosser Ramon, Ruiz-Avila Luis, Camí Jordi
Background: Psychological and behavioral symptoms constitute a very relevant aspect for both
caregivers and persons with Alzheimer's disease (AD). As cognition deficits progress, the ability of the
caregiver to interact with the persons with AD at emotional levels is impaired. To help overcoming this
situation, it has been postulated that caregivers should not try to bring persons with AD back to the
objective reality, but that they should rather empathize with them. Indeed, establishing such an
emotional connection helps improving the perceived well-being of caregivers themselves. To assist in
such a complex process, we have developed a therapeutic game, named CONEM-BETA, from a subset
of Montessori activities that was adapted from the original texts from the Myers Research Institute. To
date, multiple therapeutic games have been developed but few have undergone proper scientific
validation.
Objective: The purpose of the study was to assess the efficacy of the systematic use of the CONEMBETA therapeutic game in improving the subjective well-being of family caregivers of persons with an
advanced stage of AD.
Design and Methodology: Three-arm study: A) Control Group B) Socio-educational training only C)
CONEM-BETA + socio-educational training. Efficacy was assessed at baseline and after 8 weeks by
using the Scales of Psychological Well-Being (PWB). Additional questionnaires were administered to the
participants to evaluate their anxiety and depression (assessed with the Goldberg’s scale), coping
strategy (measured by Coping Strategy Indicator), caregiver burden (measured by the Zarit Scale) and
perceived social support (measured by Duke-UNC questionnaire).
Results: One hundred and eight couples of caregivers and persons with AD were randomized, out of
which 87 completed the study. An improvement of 4.98 % was observed in the psychological well-being
of caregivers in arm C (CONEM BETA) that was statistically significant when compared to the
deterioration observed in groups B (-3.01 %; p<0.05) and A (-1.36 %; p<0.10). Moreover, a trend to
improvement was also observed in the depression scale of group C when compared to groups A
(p=0.10) and B (p<0.10). No significant differences were observed in the other variables of the study.
Conclusions: These results suggest that the systematic use of CONEM-BETA provides a significant
improvement, though moderate, in self-reported psychological well-being of caregivers of persons with
advanced AD. This improvement would be mediated by facilitating the emotional connection between
persons with AD and their caregivers through the COMEM-BETA therapeutic game.
Trial registration: ClinicalTrials.gov - NCT01652222.
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Acknowledgements: This study has been partly funded by the Spanish Ministry of Economy and
Competitiveness. The authors thank the participant centres: Fundació Mútua de Terrassa, Institut
d’Assistència Sanitària de Salt and Hospital Santa Maria de Lleida.
PO4.14. Do not forget the songs – a choir for people with and without dementia
Blaschke Ursula
I’m walking in the sea of forgetting,
Drifting without time and future,
Losing myself in the dark of the day.
You – with your limits and beams which keep you up and show you the right direction
Give me your hand.
In November 2012 a choir of a special kind entitled ‘Do not forget the songs’ started. It was special
because in this choir old and young people, people with and without dementia, relatives, acquaintances
and friends make music and sing together.
The joint singing makes new encounters possible and strengthens old connections. Songs often awaken
childhood memories and accompany us through our whole lives. Even if – from a certain age – our
memories fade we do not lose the songs from the past. By listening and especially by singing together
with other people we can become aware of memories and associate them with our present.
Even if in the course of a mental disease the memory fails and things we once remembered are no
longer available songs as well as their texts are still familiar and can be sung. Even people whose power
of speech has become very restricted remember old songs and can and can sing them together with
others for a long time.
Singing together in a choir supports demented people and their relatives, friends and neighbours and
helps them to find a way out of their social isolation and to break the taboo of a mental disease.
For people suffering from dementia, too, their quality of life implies more than good medical and nursing
care. In order to do justice to a new generation of patients with dementia a cultural involvement must be
made possible in many fields.
A choir stands for normality, enables the involvement in social processes and creates social contacts.
The choir practice takes place in the afternoon twice a month. The conductor is a trained music
geriatrician, and the project management lies with a trained female cultural geriatrician who has many
years’ experience in the care of people with dementia.
The rehearsals are visited by about 30 people who love singing. Here people with a demented disease,
people with a mental or physical disablement, people caring for sick relatives, people working on a fulltime or part-time basis or as volunteers who are experienced in the care of the elderly and people who
do not suffer from dementia and who do not have a caring relationship come together.
The choir practices offer experiences shared by people with or without dementia. People with dementia
experience the normal life of a choir, they are treated as equals and get appreciation.
Their experiences with singing (in a choir) are the same as those of singers who are not ill.
In the choir the participants can enjoy a fruitful togetherness and a stimulating exchange. Singing
together in a choir implies for all participants that they share a piece of normality which they experience
together.
PO4.15. Innovation in Programming: Why is art so important for those with dementia?
Burns Michelle
The World Health Organization projects the number of individuals diagnosed with dementia to triple by
the year 2050. Without a medical cure on the horizon, we face growing pressure to address quality of
life issues for those diagnosed. Recent studies indicate that engaging in an enriching environment can
offer the beneficial impact of impeding the progression of Alzheimer’s disease.
I have developed and implemented a program using an innovative art process that provides
opportunities for those with dementia to reach beyond their comfort zone and experience novel
activities. Modified steps allow the artists to keep their minds engaged and explore creativity without
focusing on perceived inabilities. This approach gently challenges the artist in a way that is unique and
enlightening.
Sophisticated and aesthetically pleasing outcomes are the keystone of this program. This ensures that
participants are respected as mature adults. The final product then becomes an important vehicle to
draw others into the art. These pieces enable families and others in the community to celebrate the
person that is and their journey, instead of focusing on what is lost.
In this presentation, I will share examples to define “sophisticated art” and discuss how this process
compares to art therapy. Participants will learn how using simple tools to integrate this innovative art
process offers an experience that promotes activity and mindful engagement. I will share valuable
experience I have gained on how to best achieve this process, specifically:
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the importance of facilitator training,
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the significance of variation of mediums, and
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the need to create an “art studio” atmosphere to foster independence, engagement, peer
involvement and self esteem.
This innovative program strives to create a stimulating and enriching environment in the magical realm
of art while improving the quality of life for those with Alzheimer’s disease.
PO4.16. The dancing heart: vital elders moving in community
Genne Maria
The interactive presentation of KAIROS Dancing Heart – Vital Elders Moving in Community includes an
overview of our participatory dance, music and story “artistic interventions” that are designed for older
adults, many dealing with memory loss, their caregivers, both professional and family, volunteer and
intergenerational community members. Also included is a discussion about some of the latest research
that influences the work and an opportunity to experience this art-making experience first hand.
KAIROS Dancing Heart engages the creative, cognitive, physical and social needs of older adults and
frail elders in communities in Minnesota, USA. Created and led by KAIROS ALIVE! Director Maria
Genné, along with KAIROS teaching artists, they have engaged through interactive dance, music,
storytelling and theatre, more than 6,000 older adults, family members and caregivers since 1999.
Participation/performance settings are day programs, nursing homes, community centers, schools, and
other venues that also have included regional and national conferences, and conventionally understood
performance stages, sometimes in collaborations with other arts organizations. These artistic
interventions are led by diverse professional performing artists versed in KAIROS’ participatory
performing art making methods, usually in teams of three artists. These artists are fluent in dance,
theater, music and other art forms, as well as being skilled teaching artists expert in working with a
diverse population of arts learners, including older adults. KAIROS artists join Genné and perform
together with other community dancers, ages 1-93 years in the intergenerational dance troupe, KAIROS
Dance™.
KAIROS Dancing Heart constitutes a new inclusive and enfranchising model of artistic and social
leadership, and is simultaneously a community building and enhancement practice. This activity results
in often deeply moving dance/story/music/theater works that are one-of-a-kind and often nonrepeatable. And, in the development and presentation of community participation/performance events
that can include extended family and community members as participants, and as more conventionally
understood audience members.
Preliminary evaluation of findings about The Dancing Heart suggests tangible, measurable benefits in
slowing down aspects of the progression of dementia and sustaining the physical, emotional and
cognitive health of participating older adults. This results both in quality of life improvements and cost of
care savings.
KAIROS Dancing Heart is the 2011 winner of the Rosalinde Gilbert Innovations in Alzheimer’s Disease
Caregiver Legacy Award and has received the Award for Excellence in Program Innovation from the
Archstone Foundation/APHA, and the 2008 MindAlert Award of the American Society on Aging/Metlife.
KAIROS ALIVE! and KAIROS Dancing Heart are featured in the 2012 Public Broadcasting Service
television documentary in the U.S.: Arts and the Mind.
PO4.17. Occupation and identity in cognitive decline disorders
Macedo Pedro
This communication intends to highlight the importance of occupation as a main factor in Cognitive
Decline Disorders. Occupation contributes to improving a sense of self (also encompassing the
positioning of the self in the context of relational surroundings) and is a decisive inclusion factor in the
person’s complex social network. More specifically, the aim is to highlight the importance of occupation
independent of productivity rate as it is commonly understood.
It is widely accepted that occupation plays a decisive role throughout adult life. It can be the source of
emotional and psychological health but it can also be related to psychological distress and
psychopathology.
Occupation implies procedures, knowledge and intent to produce. Occupation can be split into two
components: automatic-occupation, i.e. expertise that relies on skills that are learnt and frequently
repeated, tending to become automatic. And dynamic-occupation, which requires an active participation
of the self, the experience of the self as an agent through the use of the body, multiple-intelligence and
subjectivity.
We propose that the individual’s occupation and all its working procedures, i.e. both automatic and
dynamic-occupation, become deeply engraved in the person as a whole, to a point where the individual
experience of the occupation becomes a regulating factor in the individual’s functioning in relation to the
self, the collective and the social context. In this sense, occupation is an intimate, intra-subjective but
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also intersubjective experience in relation to others and society, acquiring a collective dimension out of
which emerges specific inter-individual relational patterns.
We know that identity is affected by the discontinuity of its constituting parts. The deprivation of an
occupation, specifically when there is a feeling of loss of capacities on account of the depletion of
mental/cognitive or physical abilities, will undoubtedly have consequences on the stability and
consistency of a person's identity, with individual and unforeseen social repercussions. An occupation
implies a complex dynamic and structured set of merging processes both at the level of the individual
and the collective. In the case of cognitive decline in older age and pathological ageing (e.g. Alzheimer’s
Disease, Vascular D. and others forms of dementia), these effects are translated into the concept of
cognitive breach, entailing a wide variety of consequences for that person. The resulting low perceived
self-efficacy has its origins in both the individual and society. Re-perceiving self-efficacy in this context is
defined as the process whereby the individual regains the capacity to perform what was thought to be
lost regardless of decreased speed of execution and accuracy, among other changes.
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