Co-production of post-diagnostic psychosocial intervention with carers of people with intellectual disability and dementia
| DOI | https://doi.org/10.1108/AMHID-01-2022-0006 |
| Published date | 21 April 2022 |
| Date | 21 April 2022 |
| Pages | 169-178 |
| Subject Matter | Health & social care,Learning & intellectual disabilities |
| Author | Daniel Acton,Caroline Duncan,Sujeet Jaydeokar |
Co-production of post-diagnostic
psychosocial intervention with carers
of people with intellectual disability
and dementia
Daniel Acton, Caroline Duncan and Sujeet Jaydeokar
Abstract
Purpose –This paper aims to underline the importance of using a collaborative approach when
designing and adapting a post diagnostic psychosocial intervention of cognitive stimulation therapy
(CST) for peoplewith intellectual disability and dementia.
Design/methodology/approach –As part of a service improvement,a manual of CST was adapted, for
delivery in clinical practice. A qualitative co-production method allowed participants with a lived
experience to provide regular feedback relating to the development of the adapted CST manual and
intervention programme. Thisfeedback was used to make continual development changes to the CST
manual.
Findings –The study demonstratedco-production with those who provide careis valuable in adapting
psychosocial therapies for people with an intellectual disability and dementia. Additional findings
identified the needfor carer education in ageing, dementia care and thephysical health needs for older
people withintellectual disability.
Originality/value –To the best of the authors’ knowledge, this is the first study that has used a co-
productionapproach with families and carers in adaptinga group therapy programme for people withan
intellectual disability.This paper underlines the need for post diagnostic clinical interventionsfor people
with dementiaand those who provide care.
Keywords Collaboration, Carer, Ageing, Learning disability, Alzheimer’s disease,
Cognitive stimulation therapy
Paper type Technical paper
Introduction
There is a growing emphasis in the UK underling the value of co-production and participant
involvement in research and developing health-care services (National Institute for health
research, 2021;NHS England, 2017). Co-production is termed; a shared approach to
decision-making allowing for collaboration within service design and delivery (INVOLVE,
2018). It is important to acknowledge the valuable insight people with lived experiences
provide into service developmentwith patient benefit at the forefront of quality improvement
initiatives (Health Quality Improvement Partnership, 2017). An area which has experienced
limited participant involvement is collaboration in adapting health-care interventions for
people with intellectualdisability including for those with Dementia.
It is largely recognised, more people with intellectual disability ar e living into older adulthood
due to improvements in health-care provision. Consequently, people are increasing risk of
developing age-related illness such as dementia. The World Health Org anisation (2021)
Daniel Acton and Caroline
Duncan are both based at
Centre for Autism,
Neurodevelopmental
Disorders and Intellectual
Disability (CANDDID),
Community Learning
Disability Services,
Cheshire and Wirral
Partnership NHS
Foundation Trust, Chester,
UK. Sujeet Jaydeokar is
based at Centre for Autism,
Neurodevelopmental
Disorders and Intellectual
Disability (CANDDID),
Learning Disability
Neurodevelopmental
Disorders and Acquired
Brain Injury Services,
Cheshire and Wirral
Partnership NHS
Foundation Trust, Chester,
UK and Chester Medical
School, University of
Chester, Chester, UK.
Received 26 January 2022
Revised 9 March 2022
Accepted 28 March 2022
The authors would like to thank
all the carers who participated
in the study who provided
valuable feedback and Jo Riley
in supporting the adaptation of
the CST manual.
DOI 10.1108/AMHID-01-2022-0006 VOL. 16 NO. 3 2022, pp. 169-178, ©Emerald Publishing Limited, ISSN 2044-1282 jADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIESjPAGE 169
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