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

  wt66@kent.ac.uk

• 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.

  Lay summary of study results: Adults with learning disabilities are more likely to develop dementia than the general population. Since dementia gradually worsens over time and there is currently no cure, it is important to focus on helping people live as well as possible and supporting what matters most to them. Understanding a person's Quality of Life can help improve care, guide services and policies, evaluate support programs, and assist with planning for future and end-of-life care.

  This study explored what makes life good and meaningful for people with learning disabilities who may have dementia. The aim was to better understand their experiences and use this information to develop a new way of measuring Quality of Life for this group.

  Seven key factors that influenced Quality of Life were identified
  1) Autonomy
  2) Creating a comfortable and supportive environment
  3) Maintaining social connection
  4) Maintaining well-being
  5) Personal growth
  6) Staying connected with the world

  The findings provide insight into what people with learning disabilities and suspected dementia consider important for a good Quality of Life. Participants also shared concerns and care needs based on their lived experiences. These findings can help researchers, policymakers, and service providers better understand, support, and measure Quality of Life for this population.
  The study also contributed to the development of a new Quality of Life questionnaire specifically designed for people with learning disabilities and dementia. Further research has since been carried out to gather expert feedback on whether this new measure is comprehensive, relevant, and suitable for assessing Quality of Life in this group.
  

• 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