People with intellectual disabilities at the end of their lives: The case for specialist care?

• Published in: Journal of applied research in intellectual disabilities 2017-11, Vol.30 (6), p.1138-1150
• Main Authors: Forrester‐Jones, Rachel, Beecham, Jennifer K., Barnoux, Magali, Oliver, David, Couch, Elyse, Bates, Claire
• Format: Article
• Language: English
• Subjects: Aging (Individuals); Case Studies; Costs; Death; end of life; Fees; Financial Support; Foreign Countries; Humans; Intellectual disabilities; Intellectual Disability; Interviews; Mixed Methods Research; Observation; Older Adults; Quality of Life; Questionnaires; Residential Care; Social Networks; specialist; Terminal Care
• ISSN: 1360-2322; 1468-3148
• DOI: 10.1111/jar.12412

Background People with intellectual disabilities have a shorter life expectancy, but healthcare improvements mean that they are beginning to live longer, with associated health difficulties. This means that there is an urgent need to focus research on ageing as well as end‐of‐life care. This study aimed to explore a specialist intellectual disability service for older people who are dying and how it related to their quality of life and to costs associated with care provided. Method Data were collected for nine residents and 15 staff members of the specialist service. A single case study design with mixed methods including observations, interviews, standardized questionnaires and costs analysis was utilized. Results We found positive results regarding overall quality of life, although individuals had limited social networks. Placement fees paid by local health trusts and social services departments were slightly higher than the estimated cost of care reflecting good financial management by a small voluntary sector organization. Conclusion Whilst the philosophical arguments around “specialist” care persist, this service fills a gap in intellectual disability care provision.