SHIELD Research Programme Newsletter
Spring 2011
Produced and edited by Cathy Forbes, Office Manager – Dementia Research Centre and
Juanita Hoe, SHIELD Research Programme Coordinator
1. Programme Details
The Support at Home - Interventions to Enhance
Life in Dementia (SHIELD) project is a 5-year
grant-funded NIHR programme on psychosocial
interventions in dementia, led by Professor Martin
Orrell at UCL/NELFT. This research programme
aims to reduce disability, improve health
outcomes, and enhance quality of life for people
with dementia and their carers. NIHR funding for
SHIELD was received in August 2007 and the
research programme commenced in February
2008.
2. Changes to Research Team

Staff Changes
o
Jennifer Wenborn is now employed as the
CSP-RYCT Trial Manager. Her new role
draws together some aspects previously held
by Georgina Charlesworth, Juanita Hoe and
Karen Burnell, along with some additional
activities; with the aim of more effectively
managing this complex trial.
Previously
Jennifer advised on the Remembering
Yesterday Caring Today (RYCT) aspect of the
Carer Supporter Programme (CSP), based on
her experience from the RemCare trial.
Jennifer has over 30 years experience as an
occupational
therapist,
having
worked
primarily with older people as a clinician,
manager and independent practitioner within
statutory, voluntary and private health and
social care settings. Having developed a
particular interest in continuing care; she has
worked extensively in care homes with older
people and severely disabled adults; and
published numerous articles and training
materials on the topic of activity provision.
Jennifer completed her PhD 'Occupational
therapy and people with dementia in care
SHIELD Newsletter - Spring 2011 No 4 v1.0.doc
Grant Number RP-PG-0606-1083
o
homes' at University College London (UCL)
early in 2010.
Cathy Forbes, SHIELD Research Programme
Administrator has been upgraded to Office
Manager – Dementia Research Centre at the
end of last year. She will remain involved with
the SHIELD research programme but will also
provide support to the other dementia
research projects that are being conducted
within NELFT (e.g. iCST and Anxiety in
Dementia: I can’t forget to worry). Cathy is
currently being supported by a temporary
administrative assistant but recruitment is
underway to find a permanent replacement.
3. NELFT Staff Awards
Mick & Sue Barrett have been nominated and
shortlisted for the Volunteer of the Year Award at
the NELFT Staff Awards on 31 March. Mick &
Sue provide valuable musical support at the
RYCT sessions as part of CSP.
NELFT
colleagues will be supporting Mick & Sue on the
night.
4. Research Project Updates
Maintenance
Therapy
Cognitive
Stimulation
The Maintenance Cognitive Stimulation Therapy
(MCST) programme is exploring the long-term
effects of a Maintenance CST programme v CSTonly for dementia. The mental stimulation groups
for people with dementia aim to improve cognition
and quality of life.
MCST recruitment and follow-up assessments
The MCST team successfully completed the
recruitment for the MCST trial in August 2010,
with 273 participants being recruited from 18
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SHIELD Research Programme Newsletter
Spring 2011
centres (9 community and 9 care homes). The
MCST team are currently completing the final
maintenance CST sessions and follow-up
assessments for the three final rounds.
The participant retention rates for the final 3
rounds (82.44%) has been higher than the initial
rounds (67.28%) and the feedback from these
final rounds has been very positive, with some
centres expressing their intention to continue with
the groups after the trial have finished.
An updated consort diagram can be found below.
Zoe Hoare, Trial Statistician (NWORTH), and
Elisa Aguirre, Research Assistant, are working on
data cleaning and analysis. They have created
and are following a data management plan which
includes a step-by-step guide of the data-cleaning
process followed for the MCST trial.
The
document will be available from Cathy Forbes.
Baseline datasets (1 and 2) checks were carried
out between December 2010 and February 2011
and the data was frozen and analysed at the end
of February 2011. Baseline data analysis will be
available from June 2011 and Zoe Hoare will be
reporting and presenting the results at the next
DMEC meeting and Programme Management
Day in July 2011.
MCST Work Package 4
Amy Streater, Research Assistant has been
leading on MCST WP4: ‘An evaluation and
comparison of the effectiveness of two different
CST training approaches and its implementation
in practice’
The project has now been submitted to ethics and
Amy and Elisa Aguirre, Research Assistant
attended the ethics committee meeting on 10
March 2011. We are still awaiting the decision
from the meeting.
A staff training DVD for running CST groups has
been made, which is in the final stages of
production and will soon be ready for
dissemination. It includes all themes as part of
the Maintenance CST programme, as well as an
introduction by Aimee Spector and questions for
reflective learning after each 5-minute clip.
Data entry and data analysis
MACRO data entry for the MCST Trial is nearly
complete. All baseline data was entered by
December 2010 and data for the round 5 and 6
follow-ups is currently being entered.
The
Bedfordshire team are inputting their own data.
The MCST data entry should be completed by the
end of March 2011.
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Grant Number RP-PG-0606-1083
Focus groups are planned, which will include staff
members who have previous experience of
running CST groups, either as part of the
research project or independently, to develop the
outreach support strategy in more detail. The aim
is to gain their opinion on the outreach support
options to be offered as part of the research
project. The focus groups will enable us to create
a knowledge base to develop and deliver the
outreach support options for staff members as
part of a large-scale Randomised Controlled Trial
(RCT) and monitoring study.
Elisa Aguirre and Amy Streater
March 2011
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SHIELD Research Programme Newsletter
Spring 2011
Carer
Supporter
Programme
Remembering Yesterday Caring Today
-
The Carer Supporter Programme (CSP) is
researching peer support interventions for family
carers of people with dementia. The work
packages include: (1) a systematic review; (2)
development of training and other materials; (3 &
4) pilot and full trials of the Carer Supporter
Programme compared to treatment as usual, the
‘Remembering Yesterday, Caring Today’ (RYCT)
group reminiscence programme and a combined
CSP-RYCT intervention; and (5) dissemination.
Our main activity since the last Programme
Management Day has been with Work Package
4, the full CSP-RYCT trial. The target sample
size for this trial is 360 dyads, recruited at a rate
of 24 dyads per round. At the programme
management day we reported having the first four
rounds in progress, and our target to start a
further seven rounds during 2011. Having underrecruited in the first three rounds, we are pleased
to report that 26 dyads were recruited to the
fourth, bringing the total number of dyads
recruited and randomised to 85. In order to
achieve the required sample size, we need to set
up rounds in other areas, and so are delighted to
have made good progress with this in
Northamptonshire and Norfolk.
Thanks to Thames Valley DeNDRoN and their
support to Northamptonshire Healthcare NHS
Foundation Trust, we now have two rounds
planned in Northants, with recruitment for the first
round due to start in April. In Norfolk we are
working with East Anglia DeNDRoN, Norfolk and
Waveney Mental Health NHS Foundation Trust
and Age UK Norfolk to plan two rounds. Their
local SSI application is about to be submitted and
recruitment to the first round is due to start in
April/May. Locally, we are now recruiting to a
second ‘wave’ in Redbridge; will shortly return to
Barking and Dagenham; followed by another new
area within NELFT - the London Borough of
Waltham Forest.
establish the RYCT teams, with Jacqueline Illes,
an experienced occupational therapist, facilitating
the Havering programme that started its weekly
meetings in January, plus the Redbridge
programme when it starts in May. We work in
partnership with a voluntary organisation within
our four London Boroughs to provide the Carer
Supporter intervention, namely: Age Concern
Havering, Redbridge Respite Care Association,
Carers of Barking and Dagenham, and are
currently in discussion with Waltham Forest
Carers Association. In contrast, the Northants.
Carer Supporter Programme will be provided by
the NHS Trust through an established Dementia
Care Advisor working in collaboration with
volunteers.
Our 5-month follow-up research interviews in
Redbridge have been completed; are well
underway in Barking and Dagenham; and will
start for Havering wave 2 in April. The 12-month
follow-ups for Havering wave 1 have been
completed and will start in Redbridge in April.
Based on two completed rounds of 5-month
follow-ups; and one of 12-month follow-ups; the
retention rate at each time point is 89.5% and
81.3% respectively.
In terms of data management, all completed
interviews
are
entered
into
MACRO
contemporaneously. Jennifer has continued to
work with NWORTH on developing the adherence
database. This should be finalised soon and
intervention receipt data entered. Georgina
Charlesworth and Jennifer plan to meet with Zoë
Hoare, Trial Statistician (NWORTH), to further
discuss the CSP-RYCT analysis plan; and
Jennifer is working with Professor Jeni Beecham
(LSE) to provide the costing framework data.
Georgina Charlesworth and Jennifer Wenborn
March 2011
Within NELFT, we continue to work with local
clinical services and other organisations to
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SHIELD Research Programme Newsletter
Spring 2011
Home Treatment Programme
The Home Treatment Programme (HTP) is part of
the Support at Home: Interventions to enhance
life in dementia (SHIELD) research programme
on psychosocial interventions in dementia. The
purpose of the SHIELD Home Treatment
Programme is to identify the most promising and
helpful interventions to establish a model of
effective home treatment for dementia.
This Home Treatment Package will be used to
help maintain the person with dementia at home
in times of crises, thus avoiding or delaying
admission to hospital or a care home. We aim to
evaluate the impact of receiving the Home
Treatment Package on the person with dementia
and their caregivers’ quality of life and wellbeing.
WP1 – Cochrane and systematic reviews
The first stage has been to review the literature
and evidence in the area. A Cochrane Review of
the effectiveness of case/care management
approaches to home support for people with
dementia is being conducted. The results are
currently being analysed and the research team
are due to begin working on the first draft of the
review.
A second systematic review on
effectiveness of crisis resolution / home treatment
services for older people with mental health
problems was accepted for publication in
November 2010 in the International Journal of
Geriatric Psychiatry. A third systematic review is
also being undertaken on causes of crisis for
people with dementia.
The searches were
completed by the NHS Library at North East
London NHS Foundation Trust.
All the
references have been screened and checked for
eligibility by the authors. The next stage will be
to extract all the data from the studies and to
analyse the results.
WP2 – Home Treatment Manual Development
1. Focus Groups Paper
A paper that uses the findings from the focus
groups - on the causes of crisis and interventions
to help support people with dementia and their
carers in a crisis is currently being drafted for
publication. The research team is intending to
submit the paper to the British Medical Journal.
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Grant Number RP-PG-0606-1083
2. Stakeholder Questionnaire
The aim of the stakeholder questionnaire was to
identify the primary causes of crises and what
interventions can i) prevent a crisis ii) be most
useful in a crisis for people with dementia and
their carers.
Questionnaire design
Causes of crisis
The thematic analysis of the transcripts from the
Focus Groups led to the identification of five
categories for the causes of crisis:
1. Behavioural/psychological
2. Physical health
3. Vulnerability
4. Family carer
5. Environment
Each category included a list of factors that could
lead to a crisis for people with dementia and their
carers. People were asked to select their top
50% from the selection.
Respondents were then asked to rank the five
categories in order of importance, 1 being the
most important, 5 being less important
Interventions in a crisis
The thematic analysis of the transcripts from the
Focus Groups also led to the identification of four
categories of interventions:
1. Professional healthcare support
2. Home living environment
3. Social home care support
4. Family carer
Each category included a list of interventions and
respondents were asked to indicate those that
were most likely to i) prevent a crisis ii) be useful
in a crisis or both. Respondents also had the
choice to leave each option empty if they felt that
the intervention was not likely to prevent or be
useful in a crisis.
Dissemination of the questionnaire
The questionnaire was available for completion
between November 2010 and January 2011 in
both online and hard copy (if requested).
Dissemination was via professional organisations;
NELFT and dementia networks (health care
professionals);
direct/personal
email
correspondence
to
published
academics;
Dementia UK (carers); participants of the focus
groups (carers and health care professionals);
and day centres/hospitals (1:1 meetings with
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SHIELD Research Programme Newsletter
Spring 2011
people with dementia following consultation with
managers).
Responses
831 people started the questionnaire of which:
 720 people completed the questionnaire
(86%).
 13% of the respondents were male and 87%
female
 86% of the respondents had been involved in
a crisis with people with dementia and their
carers.
Responses by category
Health Sector
Family/Informal Carer
Other (please specify)
Social Care Sector
Academic
Emergency Services
Charitable/Voluntary Sector
Person with Memory
Problems/Dementia
Response
Percent
Response
Count
78.1%
7.5%
3.9%
3.2%
2.8%
2.2%
1.5%
562
54
28
23
20
16
11
0.8%
6
Breakdown of Health Sector responses
Nurse - General
Occupational Therapist Mental Health
Nurse - Psychiatric
Other (please specify)
Doctor – Psychiatry
Psychologist
Occupational Therapist Physical Health
Support Worker
Doctor - General Practitioner
Doctor - Medical
Physiotherapist
Response
Percent
Response
Count
49.6%
280
19.0%
107
11.7%
10.8%
3.4%
2.3%
66
61
19
13
1.8%
10
0.7%
0.4%
0.2%
0.2%
4
2
1
1
Analysis
Further analysis of the questionnaire is planned
and the results will be used to inform the content
of Draft Version 1 of the Home Treatment Manual
and the Consensus Conference. The results will
be presented at the next Programme
Management Day in July 2011.
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Grant Number RP-PG-0606-1083
3. Narrative Inquiry Interviews
Ten narrative inquiry interviews have been
conducted with carers of people with dementia.
The questions addressed: the prompting to seek
help; reasons/decisions to present at that time
(and why not earlier/later); the interpretation of
events; and understanding of experiences. The
interviews were audio taped and are currently
being transcribed. For this study, a grounded
narrative analysis approach will be adopted. This
approach will allow us to gain insight into how
individuals interpret crisis/referrals/admissions
and look for commonalities in types of experience
that may be related to specific types of
interpretation.
4. Draft Version 1 of Home Treatment Manual
The SHIELD HTP team met on 11 March 2011 to
review the work that had already commenced on
the Draft Version 1 of the Home Treatment
Manual and to plan for its ongoing development.
The principles of care pathways were considered
the most appropriate design for the manual,
although the term ‘advisory protocol’ has been
adopted as this focuses more on preferences and
choice and less on technological certainty about
the necessary courses of action.
Based on these principles, the team discussed
the design of the advisory protocol and the
pathway it would follow when a crisis referral had
been made. These included the assessment
procedures, crisis identification, care planning
and intervention selection methods.
Further work is being undertaken, looking at how
the identified interventions can be used to map
responses to the problems identified in a crisis. It
is anticipated that these will be presented as a
glossary of interventions that will supplement the
advisory protocol.
A draft version of the HTP Manual and Advisory
Protocol will be presented and discussed at the
forthcoming Consensus Conference on the 6 April
2011.
Sandeep Toot & Ritchard Ledgerd
March 2011
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SHIELD Research Programme Newsletter
Spring 2011
5. Publications
Outputs
and
Other
o
Publications

Maintenance
Cognitive
Therapy (MCST)
o
o
o

Stimulation
Spector A, Aguirre E, Orrell M 2010.
Translating Research into Practice: A
pilot study examining the use of
Cognitive Stimulation Therapy (CST)
after a one-day training course.
International
Journal
of
Nonpharmacological Therapies in Dementia.
Volume 1 Issue 1 pp61-70
Aguirre E, Spector A, Hoe J, Streater
A, Russell IT, Woods RT, Orrell M
2011. Development of an evidencebased
extended
programme
of
maintenance
cognitive
stimulation
therapy (CST) for people with dementia.
International
Journal
of
Nonpharmacological Therapies in Dementia.
Volume 1 Issue 3
Aguirre E, Spector A, Streater A,
Burnell K, Orrell M 2011. Service users’
involvement in the development of a
maintenance
Cognitive
Stimulation
Therapy
(CST)
programme:
A
comparison of views of people with
dementia, staff and family carers.
Dementia Journal. Volume 4, Issue 10
Home Treatment Programme (HTP)
o
Toot S, Devine M, Orrell M 2011. The
effectiveness of crisis resolution / home
treatment teams for older people with
mental health problems: a systematic
review
and
scoping
exercise.
International
Journal
of
Geriatric
Psychiatry details of issue.
o
o
the Gradior-Intras team (Research and
Treatment in Mental Health and Social
Services.
Amy Streater, Research Assistant, ran a
workshop at the 13th Asia-Pacific Regional
Conference
of
Alzheimer’s
Disease
International in Malaysia on 22 October 2010.
Amy Streater also ran a workshop at the
Memory Services National Accreditation
Programme (MSNAP) 1st Annual Forum in
London on 29 November 2010.
Elisa Aguirre and Amy Streater will travel to
Toronto at the end of this month to give
presentations at the 27th International
Conference
of
Alzheimer’s
Disease
International to run a workshop. Elisa will also
present on the development of the
Maintenance CST programme and Amy will
present on the evaluation and comparison of
the effectiveness of two different CST
approaches and their implementation in
practice.
Carer Supporter Programme / Remembering
Yesterday, Caring Today (CSP/RYCT)
o
Georgina Charlesworth gave a presentation to
the NIHR MHRN Annual London Showcase
2011.
6. Milestones for the next 6
months
Maintenance
Therapy
Cognitive
Stimulation
Members of the SHIELD research team have
given the following presentations/workshops
since the last newsletter:
In relation to WP3, the MCST team will continue
running the final 12 sessions of maintenance CST
for Round 7 till 20 April 2011. The final follow-up
assessments for the MCST trial will be completed
at the beginning of May 2011. The final data
entry in MACRO for Round 7 will take place mid
May 2011. Follow-up data will continually be
cleaned from March till May and final data
analyses will take place afterwards. Full results
will be ready by the Autumn and presented at the
DMEC and PMG meetings in November and
December 2011.
Maintenance Cognitive Stimulation Therapy
(MCST)
o Elisa Aguirre, Research Assistant, gave a
presentation on the MCST trial in Zamora,
Spain (in Spanish) on 29 September 2010 to
MCST Work Package 4
In the immediate future, the research team hope
to gain ethics approval allowing them to start
recruiting sites to take part in the research project
and test the training packages that have been
Presentations
SHIELD Newsletter - Spring 2011 No 4 v1.0.doc
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SHIELD Research Programme Newsletter
Spring 2011
developed as part of the research project. It is an
exciting opportunity to understand staff’s
perception of their workplace and the perceived
limitations they face when attempting to run a
recommended psychosocial evidence-based
therapy.
Home Treatment Programme
The HTP consensus conference is due to take
place on 6 April at UCL. We have invited
academic staff with an interest in home treatment
interventions; professionals from health, social
services and the voluntary sector who work with
people with dementia, as well as people with
dementia and their family carers. The day will
consist of a series of presentations about the
research work contributing to the Home
Treatment Manual and examples of home
treatment teams in clinical practice. This will be
followed by workshops and a plenary session in
which we will ask the participants to comment on
the draft Home Treatment Manual and make
recommendations about how it can be developed
further.
7. Focus on SHIELD training
DVDs
The SHIELD research programme is in the
process of producing training DVDs for two of its
research projects - a staff training DVD as part of
the intervention for Maintenance CST Work
Package 4; and a DVD to support the carer
supporter induction/awareness sessions for CSPRYCT. Piers Video Production has been used in
both projects and Matt Caswell’s wealth of
knowledge and experience have been valuable
throughout.
MCST
Work Package 4 (WP4) is an evaluation and
comparison of the effectiveness of two different
Cognitive Stimulation Therapy (CST) training
approaches and its implementation in practice.
The original CST manual for group leaders,
‘Making a Difference’, was published in 2006. A
Maintenance CST manual will also be published.
This builds on the original manual and introduces
new sessions and activities to be carried out with
the person with dementia.
As an additional source of information to
encourage and aid staff members working in a
SHIELD Newsletter - Spring 2011 No 4 v1.0.doc
Grant Number RP-PG-0606-1083
variety of care settings with people with dementia,
a staff training DVD is being developed as part of
WP4. The DVD will comprise of:- an introduction
by Aimee Spector, who developed the original
CST programme; a five minute clip from each
CST session as part of the Maintenance CST
programme; followed by questions on screen
after each session clip, based around the
seventeen key principles that have been
developed as part of the CST programme. The
purpose of these questions is to enable reflective
learning and build on the skills of each staff
member, for a further 24 weeks.
Before the filming commenced, a storyboard was
devised. This was reviewed by Aimee with
practical advice from Matt. Filming took place
over three days and 16 people with dementia who
had already taken part in the Maintenance CST
programme were involved.
Participants with
dementia were only required to be present for half
a day. Staff who participated in the filming had
previous experience of running groups in CST
and were familiar with the 16 people with
dementia. During filming, the main facilitators
were assistant psychologists or research
assistants and the co-facilitators were people who
had experience of working with people with
dementia, had attended the CST training day and
who had assisted in running groups previously.
The session themes were grouped into blocks of
three with one continuous stream of film lasting
fifteen minutes per theme, totalling no more than
an hour including time for changing props over
and introducing the next theme. By bringing
together themes with a common interest, the
filming flowed naturally with minimal disruption to
the group. Staff members were interchanged
during filming to highlight how everybody acts
differently in a group setting and Aimee was
available for consultation if there were any
queries.
Editing is being carried out by Matt Caswell and
Amy Streater, Research Assistant and this has
taken a couple of months. This ensures careful
consideration of what should (not) be included.
Aimee will review the edited footage.
The MCST footage is in the final stages of editing
and it is hoped that the final version of the DVD
will be ready by the end of March.
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Spring 2011
CSP
The SHIELD Carer Supporter Programme (CSP)
is dedicated to supporting Family Carers of
people with dementia through one-to-one peer
support. Newer carers are paired with more
experienced carers, known as Carer Supporters.
To prepare the Carer Supporter volunteers for
their role, they are required to attend induction
and awareness sessions. These sessions are
designed to emphasise the skills and knowledge
that the volunteers bring due to their life
experience and own role as family carers. The
sessions also make clear what is, and is not, part
of the Carer Supporter’s remit, and covers
information relevant to health and safety,
safeguarding and signposting to resources.
To assist delivery of the induction and awareness
sessions, a DVD has been prepared that traces
three couples through various stages of caring,
highlighting the issues and concerns that they
have within their unique caring roles. The DVD
encourages Carer Supporters to focus on carers’
experiences and lifestyles; guides them to
effective communication and listening skills;
encourages appropriate action in circumstances
where carers may request that a Carer Supporter
undertakes tasks beyond the boundaries of the
role; and promotes vigilance in health and safety
issues, amongst other things.
The clips have informed Carer Supporter group
discussions and raised differing viewpoints.
Through further discussion and channeling of
these perspectives, the facilitators are able to
align them with the CSP protocol.
Carer
Supporters have also commented that the DVD
assists them in retaining the information from the
sessions.
Filming took place in September 2010 with the
invaluable help & support of Carer Supporters
from the first waves in Havering and Redbridge,
ex Family Carers, staff at Age Concern Havering
and volunteer actors, together with technical
support from Matt Caswell of Piers Video
Production.
8. Abbreviations
Unfortunately the use of abbreviations is unavoidable in both research and healthcare.
abbreviations used in this newsletter are listed below in full.
All of the
CST
Cognitive Stimulation Therapy
NHS
National Health Service
CSP
Carer Supporter Programme
NWORTH
North Wales Organisation for Randomised
Trials in Health
DeNDRoN
Dementias and Neurodegenerative Diseases
Research Network
PMG
Programme Management Group
DMEC
Data Monitoring Ethics Committee
PSC
Programme Steering Committee
HTP
Home Treatment Programme
RCT
Randomised Controlled Trial
iCST
Individual Cognitive Stimulation Therapy
RemCare
LSE
London School of Economics
RYCT
Reminiscence groups for people with
dementia and their family caregivers:
pragmatic 8-centre trial of joint reminiscence
and maintenance versus usual treatment
Remembering Yesterday Caring Today
MCST
Maintenance Cognitive Stimulation Therapy
SHIELD
NELFT
North East London NHS Foundation Trust
SSI
Support at Home: Interventions to enhance
Life in Dementia
Site Specific Information
NIHR
National Institute of Health Research
UCL
University College London
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