Allbwn Ymchwil fesul blwyddyn
Allbwn Ymchwil fesul blwyddyn
Crynodeb
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.
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.
| Iaith wreiddiol | Saesneg |
|---|---|
| Cyfnodolyn | Journal of Policy and Practice in Intellectual Disabilities |
| Statws | Anfonwyd - 2019 |
Ôl bys
Gweld gwybodaeth am bynciau ymchwil 'Distinctive lives and deaths: a retrospective survey of the last months of life of people with Down Syndrome'. Gyda’i gilydd, maen nhw’n ffurfio ôl bys unigryw.Allbwn Ymchwil
- 1 Sylw/Dadl
-
Dementia is strongly linked to Down syndrome and contributes to early death in people with Down syndrome
Parsons, G., 1 Ion 2020, Yn: Evidence Based Nursing. 23, 1, t. 27 1 t.Allbwn ymchwil: Cyfraniad at gyfnodolyn › Sylw/Dadl › adolygiad gan gymheiriaid