Distinctive lives and deaths: a retrospective survey of the last months of life of people with Down Syndrome

Stuart Todd, Eleri Worth, Julia Shearn, Gareth Parsons, Jane Bernal, Katherine Hunt, Edward Olayinka Oloidi

    Research output: Contribution to journalArticlepeer-review

    Abstract

    Background
    Research highlights the prevalence and life limiting implications of dementia in people with Down Syndrome (DS). However, little is known about end-of-life outcomes for this group.

    Methods
    A survey was conducted with a sample of UK ID service providers that supported over 12,000. There were 222 deaths, of which 43 (19.4%) were the deaths of adults with DS. Core data were obtained for all 43 deaths. For 33 (76.7%) deaths, care staff returned a supplemented version of VOICES-SF.

    Results
    33 (69.8%) deaths were dementia related. It influenced mortality, staff anticipation, place of death and involvement of external support. However, awareness of death was independent of a dementia diagnosis.

    Conclusion
    Deaths amongst people with DS are distinct in an ID context. End of life outcomes were dependent on good inter-disciplinary collaboration. How and when people with DS are informed about dementia remains an area for research and service development.
    Original languageEnglish
    JournalJournal of Policy and Practice in Intellectual Disabilities
    Publication statusSubmitted - 2019

    Keywords

    • down syndrome
    • dying
    • death
    • end of life care
    • intellectual disabilities

    Fingerprint

    Dive into the research topics of 'Distinctive lives and deaths: a retrospective survey of the last months of life of people with Down Syndrome'. Together they form a unique fingerprint.

    Cite this