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

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

Health, Care, and Well-Being Research and Innovation Group

Research output: Contribution to journal › Article › peer-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 language	English
Journal	Journal of Policy and Practice in Intellectual Disabilities
Publication status	Submitted - 2019

Keywords

down syndrome
dying
death
end of life care
intellectual disabilities

Cite this

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

abstract = "BackgroundResearch 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. ",

keywords = "down syndrome, dying, death, end of life care, intellectual disabilities",

author = "Stuart Todd and Eleri Worth and Julia Shearn and Gareth Parsons and Jane Bernal and Katherine Hunt and Oloidi, {Edward Olayinka}",

year = "2019",

language = "English",

journal = "Journal of Policy and Practice in Intellectual Disabilities",

issn = "1741-1122",

publisher = "Wiley",

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TY - JOUR

T1 - Distinctive lives and deaths: a retrospective survey of the last months of life of people with Down Syndrome

AU - Todd, Stuart

AU - Worth, Eleri

AU - Shearn, Julia

AU - Parsons, Gareth

AU - Bernal, Jane

AU - Hunt, Katherine

AU - Oloidi, Edward Olayinka

PY - 2019

Y1 - 2019

N2 - BackgroundResearch 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.

AB - BackgroundResearch 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.

KW - down syndrome

KW - dying

KW - death

KW - end of life care

KW - intellectual disabilities

M3 - Article

JO - Journal of Policy and Practice in Intellectual Disabilities

JF - Journal of Policy and Practice in Intellectual Disabilities

SN - 1741-1122

ER -

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

Abstract

Keywords

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