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The end of life: informal care for dying older people and its relationship to place of death

Department of Sociology and Cultural Sciences, Longitudinal Aging Study Amsterdam (LASA), Vrije Universiteit, Amsterdam

M Klinkenberg

Longitudinal Aging Study Amsterdam (LASA) and Department of Social Medicine and Institute for Research in Extramural Medicine, Vrije Universiteit, Amsterdam

M I Broese van Groenou

Department of Social and Cultural Sciences, Longitudinal Aging Study Amsterdam (LASA), Vrije Universiteit, Amsterdam

D L Willems

Department of General Practice, Academic Medical Center, University of Amsterdam

C P M Knipscheer

Department of Sociology and Social Gerontology, Vrije Universiteit, Amsterdam

D J H Deeg

Longitudinal Aging Study Amsterdam (LASA) and Institute for Research in Extramural Medicine, Vrije Universiteit, Medical Centre Amsterdam

Objective: This study examined the features of informal end-of-life care of older people living in the community and the association between informal care characteristics and dying at home. Methods: Retrospective data were obtained from interviews and self-administered questionnaires of 56 persons who had been primary caregivers of older relatives in the last three months of their lives. Results: Results showed that informal caregivers of terminally ill older people living in the community provided a considerable amount of personal, household, and management care. Secondary informal caregivers and formal caregivers assisted resident primary caregivers less often than nonresident primary caregivers. Primary caregivers who felt less burdened, who gave personal care more intensively, and/or who were assisted by secondary caregivers, were more likely to provide informal end-of-life care at home until the time of death. Conclusions: Our study showed that informal care at the end of life of older people living in the community is complex, since the care required is considerable and highly varied, and involves assistance from secondary informal caregivers, formal home caregivers as well as institutional care. Burden of informal care is one of the most important factors associated with home death. More attention is needed to help ease the burden on informal caregivers, specifically with regard to resident caregivers and spouses. Since these resident caregivers were disadvantaged in several respects (i.e., health, income, assistance from other carers) compared to nonresident caregivers, interventions by formal caregivers should also be directed towards these persons, enabling them to bear the burden of end-of-life care.

Key Words: end of life • formal care • informal care • place of death • secondary informal caregivers

Palliative Medicine, Vol. 18, No. 5, 468-477 (2004)
DOI: 10.1191/0269216304pm888oa


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