for people with dementia Lauren Amy Yates

557 Pages·2016·13.97 MB·English

The development and evaluation of individual Cognitive
Stimulation Therapy (iCST) for people with dementia
Lauren Amy Yates
University College London (UCL)
Division of Psychiatry
Thesis submitted for the degree of Doctor of Philosophy
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Declaration
I, Lauren Amy Yates, confirm that the work presented in this thesis is my own. Where
information has been derived from other sources, I can confirm that this has been
indicated in the thesis.
__________________ ____________________________________________
Date Lauren Amy Yates
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“And the day came when the risk to remain tight in a bud was
more painful than the risk it took to blossom”
- Anaïs Nin
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Abstract
Background: Cognitive Stimulation Therapy (CST) can improve cognition and quality of life
(QoL) for people with dementia. However, previously this has only been delivered in a group
format.
Aim: To develop and evaluate the effectiveness of a home-based, carer-led individual CST
(iCST) programme.
Methods: The trial followed the Medical Research Council (MRC) framework. The
development phase included; assessment of studies of home based cognitive stimulation,
consultation with carers, people with dementia and healthcare professionals on the adaption
of the CST and maintenance CST (maintenance CST) programmes, focus groups (n=32),
ten interviews, a period of field-testing (n=22), anonline surveyand a consensus conference.
A multi-centre, single-blind, pragmatic, randomised controlled trial (RCT) was conducted. In
total, 356 people with mild to moderate dementia and their carers were recruited. Dyads
were randomlyassignedinto theiCST arm (three, 30minute sessions perweek for 25 weeks
plus support) or treatment as usual (TAU) control. The iCST training DVD was developed as
part of thetrial.
Results: In the development phase the concept of iCST was well received, and both carers
and people with dementia responded positively to the first drafts of materials. Anticipated
issues, such as finding time to do sessions and suitability of the carer to deliver sessions
were identified in the focus groups and interviews. The field-testing phase demonstrated that
implementation of the iCST intervention was feasible. However, the majority of dyads
completed fewer than three sessions per week. Identified barriers to participation included,
lack of time, illness, and motivation. The training and support package appeared to be
suitable as carers were able to deliver the intervention without intensive support. Two drafts
of the materials were produced before a final version ready for use in the main RCT. Of the
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180 iCST dyads, 134 (74%) were included in the intention to treat (ITT) analysis. There were
178 TAU dyads, of which 139 (78%) were available for analysis. At follow-up 2 (FU2) there
were no significant differences between the iCST and TAU groups in the primary outcomes
of cognition (Alzheimer’s Disease Assessment Scale - cognitive [ADAS-cog], SMD = -0·55,
95% CI -2·00,0·90; p=0·45) and self-reported QoL (Quality of Life Alzheimer’s Disease
[QOL-AD], SMD = -0·02, 95% CI -1·22,0·82; p= 0·97). People with dementia receiving iCST
rated the relationship with their carer more positively (SMD = 1·77, 95% CI 0·26,3·28; p=
0·02). No other secondaryoutcomeswere significant.
Conclusions: The rigorous development of the intervention was beneficial as the feasibility
of the intervention was explored both in theory and practice. There was no evidence of iCST
benefitting either cognition or QoL for the person with dementia. However, it did improve the
relationship with the carer. Future work should investigate delivery of iCST by paid carers or
professionals anddeveloping the interventionfor a computer platform.
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Acknowledgements
Firstly, thank you to Professor Martin Orrell. I cannot begin to express my gratitude that you
had enough faith in me to offer me the opportunity to be part of this project in the first place,
and for being ever present throughout. When writing this thesis felt like looking up at Everest
from base camp, you told me to concentrate on the checkpoints along the way instead of the
summit. You would not believe what a difference this advice made! I would also like to thank
Dr. Aimee Spector for lending expertise, support, and invaluable feedback on my thesis work
and thejournal articles we collaboratedon.
Thank you Dr. Amy Streater. Watching you tread the PhD path ahead of me gave me insight
into what was in store, and I appreciate all the times you were on hand to talk through my
latest iCST ‘crises’ or triumphs. Thanks also to Dr. Elisa Aguirrefor your advice. Learning the
ropes on the maintenance CST trial was the perfect precursor to iCST. Thank you Shier
Ziser for your hardworkand companythroughthe learning curve of thesystematicreview.
I would like to thank the iCST team – Phuong Leung, Fara Hamidi, Dr. Vasiliki Orgeta, and
James Sinclair, and all staff across the sites who ensured this study ran like a well-oiled
machine. Thank you to the NHS, voluntary organisation, and research networks staff who
assisted with recruitment.
My warmest thanks to everyone who participated in the study. It was an absolute pleasure
and privilege to meet you, and I’m grateful for your time and generosity. I always left visits
filled with a sense that working in thisfield is truly what I’m supposed to do. Special thanks to
Maggie and Michael, Carmel and Mary, and Carla and Jon. You were absolute stars on the
DVD!
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Mum, I know you would be proud of me no matter what, but I know taking on this PhD has
made you especially so, because you tell everyone you meet about it! Thank you for your
unrelenting support. Dad, it’s because of you that I’ve seen this project through. ‘Remember
that time I ruined dinner when I told you I was thinking about quitting my PhD?’ has become
a much retold classic family anecdote. I think we can laugh about it now…Thank you, Matt.
Although ‘I’m doing a PhD’ was a pretty good chat up line, little did you know the reality of
living with someone in the midst of one. I am grateful for your patience and pep talks. I’m
lucky to have lots of supportive people around me, so thank you to all family and friends who
have been interested inmyprogress with theproject.
Lastly, thank you to my grandmother, Inge. Though in circumstances I’d never have wanted,
you set me on this path. My childhood memories of you are the fondest. I will keep them for
us.
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Statement of contribution
Preliminarywork
My first tasks on the individual Cognitive Stimulation Therapy (iCST) trial were to design
activities, source materials suitable for the iCST programme and adapt key principles for
iCST. I developed an understanding of the structure of the trial, and previous research into
individual cognitive stimulation approaches in the process of converting the protocol into an
academic paper (Orrell et al., 2012).
Systematicreview
With guidance from my supervisors I developed a research question for the review based on
a topic I had interest in, and which I felt would assist in both myunderstanding of the benefits
of mentally stimulating activities, and potentially offer insight into the results of the iCST trial.
I conducted the initial title sift and removal of duplicates independently, then collaborated
with a University College London (UCL) medical student on further sifts of abstracts and
assessment of selectedstudiesforquality.
Development phase
 Organisation, recruitment, and screening of participants for focus groups, interviews,
andfield-testing.
 Guided participants through the process of providing fully informed consent to
participatein thedevelopment studies.
 Conducted sixof theindividual interviews, leadfacilitator infive of thefocusgroups.
 Took field notes in the focus group I didn’t lead and transcribed audio recordings of
two of the interviews.
 Applied thematic analysis techniques to the data (focus groups, interviews, field-
testing).
 Developed the standardised training packagetrialled in thefield-testing phase.
 Trained11 dyads andprovided support tothoseplus an additional eight dyads.
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 Conducted debrief visits
 Presented to delegates at the consensus conference, led a workshop and recorded
feedback from participants.
 Reviewed the data at each stage and was involved in the decision making process
regarding which suggested amendments should be incorporated into the manual,
activity workbook, andthe contentsof thetoolkit.
 Implemented amendments as well as performing checks of formatting, spelling, and
grammar in themanual and activityworkbook.
Mainrandomisedcontrolledtrial (RCT)
I acted as a blind researcher in the North East London Foundation Trust (NELFT) boroughs,
and the unblind researcher for iCST dyads in Barnet, Enfield and Haringey Mental Health
Trust (BEHMHT) boroughs. Aspart of myroleI completedthefollowing tasks;
 Collected baseline data for 69 dyads, blind follow up data for 62 dyads, and
contributedtodata entryinto MACRO.
 Trained 30 dyads in the iCST approach, and provided ongoing support via telephone
contacts andvisits.
 Performedrandomisations using the online service.
 Trained and supported staff from the other research sites to deliver iCST, support
carers, collect, and enter data onto MACRO. Co-ordinated audits of baseline and
followup data acrosssites.
 Co-authoredtheHealthTechnologies Assessment (HTA) report onthetrial.
 Recruitedfor, anddeveloped theiCST DVD.
 Liaised with Hawker Publications to develop thepublished version of the iCST
package.
Otherworkbased onthe iCSTtrial
Carer outcomescollected as part of theiCST trial arereportedin mycolleaguePhuong
Leung’s(PL) PhD thesis.
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Table of Contents
Declaration 2
Abstract 4
Acknowledgements 6
Statement of contribution 8
Table of contents 10
List of figures 23
List of tables 24
List of appendices 26
Publications 28
Ethical approval and trial registration 30
Abbreviations 31
Chapter 1: Introduction 34
1.1 Dementia 34
1.1.1Epidemiologyof dementia 34
1.1.2Definitionof dementia 35
1.1.3Types of dementia 36
1.1.4Symptoms of dementia 37
1.1.4.1 Cognitive symptoms 37
1.1.4.2 Non-cognitive symptoms 38
1.1.5Impact of dementia 40
1.1.5.1 Economic andsocietal impact of dementia 40
1.1.5.2 Personal impact of dementia 41
1.1.6Interventionsfordementia 42
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