Observational studyJournal of Alzheimer's disease : JAD2024
Palliative Care in Nursing Home Residents with Young-Onset Dementia: Professional and Family Caregiver Perspectives.
Observational study in Journal of Alzheimer's disease : JAD, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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Who cites it
3 citing papers in PubMed.
- Exploring quality of care through the eyes of formal and informal caregivers for residents with Huntington's disease: A qualitative descriptive study.Journal of Huntington's disease · 2026Article
- Advance care planning and quality of life: A qualitative interview study in people with young-onset dementia and their family caregivers.Palliative medicine · 2025Article
- Trends in Global Burden of Alzheimer's Disease and Other Dementias Attributable to High Fasting Plasma Glucose, 1990-2021.Medicina (Kaunas, Lithuania) · 2024Article
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Authors and funding
5 authors.
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Abstract
backgroundThe evidence underpinning palliative care in dementia is mostly based on research in older populations. Little is known about the palliative care needs of people with young-onset dementia (YOD).
objectiveTo describe palliative care practices including advance care planning (ACP) in people with YOD residing in Dutch nursing homes.
methodsThe study presents baseline questionnaire data from an observational cohort study. Physicians, family caregivers, and nursing staff completed questionnaires about 185 residents with YOD. The questionnaires included items on sociodemographics, quality of life measured with the quality of life in late-stage dementia (QUALID) scale, dementia-related somatic health problems, symptoms, pain medication, psychotropic drugs, and ACP.
resultsThe mean age was 63.9 (SD 5.8) years. Half (50.3%) of them were female. Alzheimer's disease dementia (42.2%) was the most prevalent subtype. The mean QUALID score was 24.0 (SD 7.9) as assessed by family caregivers, and 25.3 (SD 8.6) as assessed by the nursing staff. Swallowing problems were the most prevalent dementia-related health problem (11.4%). Agitation was often reported by physicians (42.0%) and nursing staff (40.5%). Psychotropics were prescribed frequently (72.3%). A minority had written advance directives (5.4%) or documentation on treatment preferences by the former general practitioner (27.2%). Global care goals most often focused on comfort (73.9%). Proportions of do-not-treat orders were higher than do-treat orders for all interventions except for hospitalization and antibiotics.
conclusionsACP must be initiated earlier, before nursing home admission. A palliative approach seems appropriate even though residents are relatively young and experience few dementia-related health problems.
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