Post-diagnostic dementia support in adults with learning disabilities
Research type
Research Study
Full title
Understanding the post-diagnostic dementia experiences of adults with a learning disability and their family or carer: A Reflexive Thematic Analysis
IRAS ID
350872
Contact name
Danielle E A Hudson
Contact email
Sponsor organisation
University of the West of England
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
People with learning disabilities are at increased risk of age-related conditions such as dementia, alongside a higher prevalence of comorbid mental and physical health conditions. Certain genetic factors, such as those associated with Down syndrome, further elevate the likelihood of developing dementia. Individuals with learning disabilities may experience different dementia diagnostic pathways (such as involvement of specialist learning disability services instead of traditional memory services) which may affect their awareness of and access to post-diagnostic support. This study seeks to investigate these differences by exploring the experiences of adults with a learning disability who have been diagnosed with dementia, alongside the perspectives of their family members or carers.
Dementia in people with learning disabilities can present unique challenges, yet little is known about this populations specific needs and about any barriers they have to accessing appropriate post-diagnostic support. Through the use of dyadic interviews, the study aims to gain a deeper understanding of the individual and shared experiences of people with a learning disability and dementia alongside their carer.
The interviews will focus on experiences of post-diagnostic dementia support services including obstacles to receiving support from mainstream dementia services. Data from the interviews will be analysed using Reflexive Thematic Analysis, a method that allows identification of themes across participants’ experiences.
The findings aim to inform the tailoring of post-diagnostic support services to better meet the needs of people with learning disabilities and dementia, while also supporting their carers. By highlighting the barriers to accessing care and understanding the unique challenges faced by this group, the research hopes to contribute to improving equality and inclusivity within dementia services.
This work ultimately seeks to enhance the quality of life for individuals with learning disabilities and dementia and to provide carers with better tools and resources to support their loved ones.REC name
East of England - Essex Research Ethics Committee
REC reference
25/EE/0074
Date of REC Opinion
29 May 2025
REC opinion
Further Information Favourable Opinion