How Do Persons with Young and Late Onset Dementia Die?

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Serval ID
serval:BIB_FF03731E771B
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
How Do Persons with Young and Late Onset Dementia Die?
Journal
Journal of Alzheimer's disease
Author(s)
Roβmeier C., Hartmann J., Riedl L., Dorn B., Fischer J., Hartmann F., Egert-Schwender S., Kehl V., Schneider-Schelte H., Jox R.J., Dinkel A., Diehl-Schmid J.
ISSN
1875-8908 (Electronic)
ISSN-L
1387-2877
Publication state
In Press
Peer-reviewed
Oui
Language
english
Notes
Publication types: Journal Article
Publication Status: aheadofprint
Abstract
End of life symptoms and symptom management as well as the quality of dying (QoD) of persons with advanced dementia (PWAD) have not yet been systematically studied in Germany.
1) To investigate symptoms, treatment and care at the end of life, advance care planning, and circumstances of death of recently deceased PWAD; 2) To determine whether there are differences between young and late onset dementia (YOD and LOD).
The study was performed in the context of the project EPYLOGE (IssuEs in Palliative care for persons in advanced and terminal stages of Young-onset and Late-Onset dementia in Germany). Closest relatives of recently deceased patients with advanced YOD (N = 46) and LOD (N = 54) living at home or in long term care were interviewed.
Circumstances of death, symptoms, and treatment appeared to be similar between YOD and LOD, except that persons with LOD had significantly more somatic comorbidities and were admitted to hospital in the last three months of life more often than persons with LOD. At end of life, 60%of PWAD appeared to be "at peace". Difficulty swallowing, gurgling, shortness of breath, and discomfort were observed most frequently. Large interindividual differences in suffering and QoD were present. Determinants of QoD were not identified.
Our findings suggest that low QoD was caused by inadequate recognition and/or insufficient treatment of burdensome physical and emotional symptoms. PWADs' needs should be assessed regularly, and strategies focusing on treatment and implementing support for both the patient and caregiver must be established.
Keywords
Dementia, end-of-life symptoms, home care, late onset dementia, long term care, palliative care, quality of dying, young onset dementia
Pubmed
Open Access
Yes
Create date
04/05/2021 8:36
Last modification date
07/05/2021 6:36
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