Title: Cognitive Stimulation Therapy for people with Intellectual Disabilities andDementia (CST-IDD). A mixed methods feasibility study.
Funder: Department of Health and Social Care

Abstract: Research question Is it feasible to conduct a full scale Randomised Controlled Trial (RCT) of group Cognitive Stimulation Therapy (CST) for people with Intellectual Disabilities (ID) and dementia to test effectiveness and cost effectiveness? Background Cognitive Stimulation Therapy (CST) is the only evidence based group psychosocial intervention for dementia that has been shown to be effective in reducing cognitive decline and improving quality of life and currently recommended by NICE guidelines for dementia. People with ID have an increased risk of dementia; however, there are no published studies of group CST in people with ID and dementia as they have been excluded from trials. Moreover despite how frequently these comorbidities are presented, there are no clinical guidelines informing psychosocial treatments for dementia in people with ID. Aims and Objectives To assess the feasibility and acceptability of a randomised controlled trial of group CST for people with ID and dementia compared to Treatment as Usual. The results of this study will inform the design of a future definitive RCT. Methods Fifty people with comorbid ID and dementia will be recruited from five NHS Trusts, and randomised to either CST or Treatment as Usual. The intervention comprises 14 sessions of themed activities delivered by assistant psychologist from the different sites for 45 minutes, with five group members in each group, twice a week, over 7 weeks. Staff will receive training, manual and supervision to support delivery of the intervention. The primary outcome will be recruitment rate, drop-out rate and adherence to the intervention. We will examine changes in the scores of outcome measures including cognition, and quality of life in individuals with ID, and will also assess the feasibility of collecting the cost-effectiveness measures. Data will be collected at baseline and after delivery of the intervention. A qualitative process evaluation will be undertaken to examine the acceptability of the CST intervention and research methods, and perceived impact of the intervention from the perspective of participants, staff and carers. Timelines for delivery The study will take place for 30 months. Anticipated Impact and Dissemination We will publish the study results in a peer reviewed journal and disseminate study findings at conferences and using social media and carer forums. The results of this study will inform future treatment plans to support thousands of adults living with Intellectual Disabilities who develop dementia as they age, potentially influencing the way that treatment is offered within the NHS. If group CST is found to be effective in reducing cognitive decline and improving quality of life, it could lead to improved health and wellbeing in individuals with ID, as well as reduced burden and improved wellbeing for both family and paid carers. Other benefits could include people with ID being able to live longer in their current place of residence, and economic benefits for both health and social care services in terms of reduced costs attributed to care homes and provision of care and reduced visits to GPs, A&E Departments and community learning disability services.

Lay abstract: Why is this study important? People with learning disabilities make up one percent of the population. Learning disabilities are often described as problems and difficulties with memory and attention that affect day to day life, normally appearing before the age of 18. Nowadays, people with these difficulties are living longer and therefore are at higher risk of developing dementia. Cognitive Stimulation Therapy (CST) is the only recommended non-drug treatment by the NHS for people living with dementia. It is proven to improve quality of life as well as slowing down loss of memory and attention problems. Sadly, people with ID and dementia have been excluded from studies evaluating how effective it is. As the number of people with these difficulties is increasing it is important to evaluate whether it is also beneficial for this population. Evidence from an exploratory study of an individually delivered programme by a family caregiver (as opposed to group) delivered CST indicated that people with ID and dementia can engage with the proposed programme; however treatment delivery was challenging for carers. This suggested that group CST, which is delivered by a trained professional, may be a more practical way of delivery. What do we want to find out? This research seeks to find out if it will be possible and acceptable to carry out an evaluation of group CST for this population using one of the best methods in research, a full randomised controlled trial. How will we plan the study? We plan to carry out a study of 50 people across five NHS trusts in Greater London. We will allocate people to either group CST or treatment as usual. This will be done randomly by a computer, so everyone will have an equal chance of receiving CST or treatment as usual. Group CST will involve 14 CST sessions over 7 weeks delivered by trained staff, using a modified manual. Researchers will test participants before and after the group CST period, to see whether CST led to any changes in &hellip;.compared to treatment as usual. We will also interview participants, their relatives and the staff running the groups, asking them about their experience of the groups. How will the public be involved? Patients and the public will be involved throughout the study by taking part in the advisory group that will meet every six months, commenting on study materials and advising on next steps. How will we communicate study results? Study findings will be published in academic journals and presented at conferences and lay groups in each of the NHS Trusts, as well as amongst our charitable partners. Study results will inform a future, larger evaluation of CST for people with ID and dementia.

Research activity codes: 6.6 PSYCHOLOGICAL AND BEHAVIOURAL
Health categories: MENTAL HEALTH;NEUROLOGICAL