Evidence-informed Dementia Care –
Issues and Challenges
Liz Mitchell
Lecturer of Nursing
University of Ulster
19 April 2012
Ea.mitchell@ulster.ac.uk
Topics
 Context
 Understandings of
dementia
 Research and best
practice guidelines
 Issues and
challenges
European Context
(OECD European Union, 2010)
 Prevalence of dementia - 7.3 million.
 Highest prevalence: Sweden, Italy, Switzerland, Germany.
 Most common causes: Alzheimer’s disease (50-70%),
Vascular dementia (30%).
 Rates increase with age: one-third of males (32.4%), half
of females (48.8%) at age 95 years.
 Patterns of care: informal care by families and friends &
formal care at home or in institutions.
The personal context
Dementia will affect all of us:
 We may develop a dementia or
 a parent or relative or
 our husband/wife, or friend
Dementia - a syndrome of progressive
nature, affecting:




Memory
Thinking
Orientation
Comprehension
•Most common forms:
Alzheimer’s Disease
Vascular Disease




Calculation
Learning capacity
Language
Judgment.
Alzheimer’s dementia
 Cortex most affected.
 Enlarged ventricles.
 Senile plaques.
 Neurofibrillary tangles in
affected neurones.
 Reduction in
neurotransmitters impaired communication
between cells.
 Insidious and progressive
course
 © 2000 - 2012 American Health Assistance Foundation
Plaques
Tangles
Alzheimer’s Trajectory
Stage 1 - 2-4 years
 Memory loss – short-term in particular
 Mild changes in personality
Stage 2 - 2-5 years
 Cognitive decline –language, problem solving.
 Depression, Disorientation, Wandering
Stage 3 – 1-2 years




Apathy, Disinterest in food
Urinary and faecal incontinence
Difficulty recognise family or friends
Can develop seizures
Vascular dementia
 Progressive sub-cortical cell death.
 Atherosclerosis is a causal factor.
 Cerebral ischaemia causes cognitive impairment.
 Cardiovascular risk management is essential.
Subtypes
 small vessel disease
 Multi-infarct dementia
Early white matter ischaemic changes - MRI
Vascular dementia trajectory
Abrupt onset with stepwise deterioration
Nocturnal confusion
Relative preservation of personality
Depression
Emotionalism
May have history of hypertension and
stroke
 Focal neurological signs
 Focal neurological symptoms






A public health priority
EU projects to enhance the evidence base surrounding
dementia:
 The EuroCoDe (European Collaboration on Dementia)
project co-ordinated by Alzheimer Europe.
 Supporting national efforts in prevention, research
coordination and best practice in treatment and care
(European Commission, 2010).
National Dementia Strategies:
 France, Norway and the United Kingdom.
 Focus - improve early diagnosis, treatment and quality
of care, and providing support to carers.
Northern Ireland strategies
DHSSPS (2010) A partnership for Care:
 to improve the health and well being of the people of Northern Ireland.
 to ensure safe and effective care services are delivered.
The Northern Ireland Dementia Strategy - DHSSPS (2011)
Improving dementia services in Northern Ireland






Prevention
Assessment
Treatment of risk factors
Person centred care
Self care
Collaboration between care organisations, local government,
independent and voluntary sectors
Prevention
 Active Ageing
 Keep physically and mentally fit
 Maintaining social roles and engagement
 Cardiovascular risk management
Issues and Challenges
 Low expectations of staff of the person’s ability to
function, leading to an enforced reliance and
dependence on support.
 Assumed vulnerability, leading to risk averse responses.
 Rewarding dependent responses
 ‘Negative’ and ‘guilt’ laden language: ‘burden on carers’,
‘bed blockers’, global financial burden.
 Over prescription of anti-hypnotics (Banerjee 2009).
Negative social context
 Stigma
 Malignant social psychology
 Social exclusion
All impact on the quality of life and cognitive
functioning of older people, particularly those with
dependency on others for care
(Kitwood and Bredin 1992, Kitwood 1997, Brooker 2007)
Dementia - multifactorial experience
(Kitwood 1997)
D - dementia
P -
person’s personality or resources
B - Biography
H - physical health
NI - neurological impairment
SP - social psychology
Sharing the diagnosis
 Promotes openness
 Validate the person’s
within the family
experience
 Sadly friends may
 Plan for the future
 Promotes helpful relationships disappear
with professionals
Respecting
Respect culture and beliefs  includes spiritual needs, religious customs, dietary preferences,
clothing preferences, jewellery, ways of doing hair.
The life the person lived  Use the name he/she prefers, support their family and friends,
recognise the importance of their possessions, clothes, letters,
handbag, photographs etc.
Respect in your approach –
 Do not rush in, do not hurry the person, allow time, spend time.
Privacy –
 Privacy is something so fundamental that if we forsake it, we
demonstrate that we no longer care.
The Value of Memories
 Life Story Work - find out as much as possible about
the person’s background, their culture, their life
history – what that person liked to do, the music
preferred, favourite movie, hobbies etc.
 The Memory Box – have you started yours?
 What would you put in your memory box?
Alzheimer’s Society (2009) report: Counting the
cost - caring for people with dementia.
People with dementia:
 occupy one quarter of UK NHS hospital beds
 stay longer in hospital than others admitted for same
treatment
 Hospital care can have a negative impact on the
dementia status and on physical health.
 Majority of people with dementia leave hospital worse
than when they arrive and a third enter a care home
from hospital.
 Nurses must be equipped with the knowledge, skills and
expertise to do the job.
Some evidence based practice approaches
 Walk in memory screening clinics
 Early diagnosis
 Cognitive enhancers
 The Dementia Café
 Community Occupational therapist input can lead to less
dependence on Social and Heath care resources (Graff
et al. 2006).
Early diagnosis gives time to:
 Maximize independence and autonomy Implement
cardiovascular risk management
 Assess for cognitive enhancers
 Prepare for the time when the person might lose
capacity – advance directives, appointment of advocate.
 Start collecting the personal history and life story
 Build a picture of who the person is, what his or her life
experiences have been, likes and dislikes and the things
they value.
(NICE/SCIE 2007)
Appropriate support
 People with dementia are not ‘Problems to be
managed’, but individuals who have ‘Needs’ to be
meet.
 Palliative care – a common unmet need (Hudson
2003).
Dementia Related Research at
University of Ulster
Gault V, Porter WD, Flatt P, Holscher C (2010) Actions of exendin-4 therapy on
cognitive function and hippocampal synaptic plasticity in mice fed a high-fat diet.
International journal of obesity 34 (8). pp. 1341-1344.
Dementia related research at UU
Gengler S, McClean PL, McCurtin R, Holscher C (2012) Val(8)GLP-1 rescues
synaptic plasticity and reduces dense core plaques in APP/PS1 mice. Neurology of
Aging 33 (2). pp. 265-276.
Irwin N, Gault V, Flatt P (2010) Therapeutic potential of the original incretin hormone
glucose-dependent insulinotropic polypeptide: diabetes, obesity, osteoporosis and
Alzheimer's disease?. Expert opinion on investigational drugs 19 (9). pp. 1039-1048.
McCormack B, Yalden BJ (2010) Constructions of dignity: a pre-requisite for
flourishing in the workplace?. International Journal of Older People Nursing 5 (2). pp.
137-147.
McCormack B, Dewing J, Breslin L, Coyne-Nevin A, Kennedy K, Manning M, PeeloKilroe L, Tobin C, Slater P (2010) Developing person-centred practice: nursing
outcomes arising from changes to the care environment in residential settings for
older people. International Journal of Older People Nursing 5 (2). pp. 93-107.
McCullagh PJ, Augusto J C, Zheng H, Mulvenna M, Wang HY, Carswell W, Wallace J,
Martin S, Jeffers P (2011) Assisting People with Early Stage Dementia: Monitoring
Wandering. In: Everyday technology for independence and care. (Eds: Gelderblom, GJ,
Soede MA, Miesenberge K), IOS Press, Amsterdam, pp. 137-144. ISBN 978-1-60750-8137.
Mitchell EA, McCance T (2010) Nurse-patient encounters in the hospital ward, from the
perspectives of older persons: an analysis using the Authentic Consciousness Framework.
International Journal of Nursing Older People 10.
Mulvenna M, Doyle L, Wright T, Zheng H, Topping P, Boyle K, Martin S (2011)
Evaluation of card-based versus device-based reminiscing using photographic images.
Journal of CyberTherapy & Rehabilitation 4 (1). pp. 57-66.
Ryan, AA (2010) Care provision for rural dwelling older people. International Journal of
Older People Nursing 5 (3). pp. 191-192.
Scott A, Ryan AA, James, I, Mitchell EA (2010) Perceptions and implications of violence
from care home residents with dementia: a review and commentary. International Journal
of Older People 6. pp. 1-13.
Scott A, Ryan AA, James I, Mitchell EA (2011) Psychological trauma and fear for personal
safety as a result of behaviours that challenge in dementia: The experiences of healthcare
workers. Dementia 10. pp. 257-269.
Zheng H, Wang H, Jeffers P, Hoda N, Mulvenna M, Martin S, Carswell W, Augusto JC,
Wallace J, McCullagh P, Taylor B, McSorley K (2011) Monitoring and visualising of night
time activity patterns of people with early dementia. International Journal of Integrated
Care, 1
Person-centredness
An approach to practice
established through the formation
and fostering of therapeutic
relationships between all care
providers, service users and others
significant to them in their lives.
It is underpinned by values of
respect for persons, individual right
to self determination, mutual
respect and understanding. It is
enabled by cultures of
empowerment that foster
continuous approaches to practice
development”.
Person-centred Nursing Framework (McCormack & McCance 2010)
Residents having more
choice
More hopeful environments
More effective teamwork
Better inter-professional
relationships
Settings being more open to
change and innovation
High challenge with high
support being practice
Development of facilitation
skills
Outcomes from implementing
a model of person-centred
practice in Older Persons
settings across Republic of
Ireland
(McCormack et al 2010)
Indicators of a ‘safe’ person-centred culture for
older people (McCormack et al 2010)
How are older people:
 talked about?
 helped to form relationships?
 enabled to retain social connections and grow through
social contact?
 helped to make sense of their space and place?
Indicators of a ‘safe’ person-centred culture for
older people (continued) (McCormack et al 2010)
 How is dignity and respect shown?
 How explicit are care values in the setting?
 How are care values used to shape the way the
team engages?
 How well do I know myself as a care worker?
 How well does the environment support personcentred care?
Dementia Education at University of Ulster
 Postgraduate Diploma/MSc Interdisciplinary Dementia
Studies. Part time distance learning.
Who for?
For any health and social care professional, who
works part of their time with people with dementia or
their families.
For information:
Contact Seana Duggan, Course Director.
s.duggan@ulster.ac.uk
References
 Alzheimer’s Society (2009) Counting the cost – caring for people with
dementia http://www.alzheimers.org.uk/countingthecost
 Banerjee S (2009) The Use of Anti-psychotic Medications for People
with Dementia: Time for Action. A Report for the Minister of State for
Care Services.
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/docum
ents/digitalasset/dh_108302.pdf (Accessed 1st June 2010).
 Brooker D (2007) Person Centred Dementia Care: Making Services
Better. London: Jessica Kingsley.
 Department of Health (2010) A partnership for care.
http://www.dhsspsni.gov.uk/8615_-_a4_partnership_web.pdf
 Department of Health (2011) Improving dementia services in Northern
Ireland http://www.dhsspsni.gov.uk/improving-dementia-services-innorthern-ireland-a-regional-strategy-november-2011.pdf.
 Graff MJL, Veroonij-Dassan MJM, Dekker J, Hoefnagels WHL, Olde
Rikkert MGM (2006) Community based occupational therapy for
patients with dementia and their care givers: randomised controlled
trial. British Medical Journal 24 (7580) pp 1196-1201
More references
 Hudson R (2003) Palliative Care. In: Hudson R (Ed) Dementia
Nursing – a guide to practice. Oxon: Radcliffe Medical Press.
 Kitwood T, Bredin K (1992) Towards a Theory of Dementia Care:
Personhood and Well-being Ageing and Society 12, pp 269-28
 Kitwood, T. (1997) Dementia Reconsidered. Buckingham: Open
University Press.
 NICE-SCIE (2006) Supporting people with Dementia in Health
and Social Care. Nice Clinical Guidance 42. [Online] Available
from:http:www.nice.org.uk/nicemedia/pdf/word//CG042NICEGuid
eline.pdf [accessed 6 December 2011].
 OECD European Union, 2010), Health at a Glance.
http://www.oecd-ilibrary.org/social-issues-migrationhealth/health-at-a-glance-europe-2010_health_glance-2010-en