How is end-of-life care with and without dementia associated with informal caregivers' outcomes?

J.A. Boogaard, J.T. van der Steen, A.H. de Boer, M.I. Broese Van Groenou

Research output: Contribution to JournalArticleAcademicpeer-review


Background: Palliative care for older people with life-limiting diseases often involves informal caregivers, but the palliative care literature seldom focuses on the negative and positive aspects of informal caregiving. Objective: To assess the association of proximity to end of life (EOL) and dementia caregiving with informal caregivers’ burden of care and positive experiences and explain differences in outcomes. Design: Data on 1267 informal caregivers of community-dwelling older people were selected from a nationally representative cross-sectional survey and analyzed using analysis of variance and multivariable regression analyses. Measurements: The Self-Perceived Pressure from Informal Care Scale and the Positive Experiences Scale were administered to assess caregiver burden and positive experiences with providing care. Results: Dementia care, both at EOL and not at EOL, was associated with the most caregiver burden relative to regular care. Dementia care not at EOL was associated with the fewest positive experiences, and EOL care not in dementia with the most positive experiences. Only the differences in burden of care could be explained by variables related to stressors based on Pearlin stress-coping model. Conclusions: Informal caregivers of people with dementia are at risk not only of high caregiver burden but also of missing out on positive experiences associated with caregiving at EOL. Future research should examine how dementia-related factors reduce positive caregiving experiences, in order to make palliative care a positive reality for those providing informal care to community-dwelling persons with dementia.
Original languageEnglish
Pages (from-to)1008-1015
Number of pages8
JournalAmerican journal of hospice & palliative medicine
Issue number11
Early online date15 Apr 2019
Publication statusPublished - 1 Nov 2019


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