Quality of life in people with learning disabilities and dementia
Research type
Research Study
Full title
Exploring perceptions of Quality of Life in people with Learning Disabilities under investigation for dementia
IRAS ID
324953
Contact name
Winnie Tsang
Contact email
Sponsor organisation
University of Kent
Duration of Study in the UK
0 years, 8 months, 30 days
Research summary
There is an established relationship between dementia and people with learning disabilities, including those with Down’s Syndrome and previous estimates have found that the incidence of dementia in older adults with learning disabilities is up to five times higher than older adults in the general population (Strydom, et al., 2013). In recent decades, the life expectancy of people with learning disabilities has increased, with more living into older age across developed countries. Age related complications continue to rise for this population.
In the absence of a cure for dementia, the focus of treatment is to promote the quality of life (Qol) of the person with dementia holistically, including the person’s medical symptoms and ensuring their comfort (Logsdon, McCurry & Teri, 2007; Woods et al., 2014). The majority of dementia-related literature, within the general population, contains reflections of the person with dementia, whilst the perspectives of older adults with dementia and learning disabilities remain largely unknown (Watchman et al., 2018).
To our knowledge, no studies so far have developed a theoretical framework of understanding QoL in people with dementia in the learning disability population. This exploratory study will inform new scale development in measuring QoL with the aforementioned conditions. The research questions include:
1) From the perspectives of people with learning disability under investigation for dementia, what is their conceptualization of QoL done via interviews?
2) Develop a theoretical model of QoL in people with learning disabilities and dementia.REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
23/LO/0263
Date of REC Opinion
15 Jun 2023
REC opinion
Further Information Favourable Opinion