The cost of providing care by family and friends (informal care) in the last year of life: A population observational study

Introduction: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases. Aim: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics. Design: National...

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Bibliographic Details
Published in:Palliative medicine 2024-07, Vol.38 (7), p.725-736
Main Authors: Johnson, Miriam J, Currow, David C, Chynoweth, Jade, Weatherly, Helen, Keser, Gamze, Hutchinson, Ann, Jones, Annie, Dunn, Laurie, Allgar, Victoria
Format: Article
Language:English
Subjects:
Adults
Bereavement
Cancer
Caregivers
Caregiving
Costs
Death & dying
Deprivation
End of life decisions
Health care expenditures
Health surveys
Households
Informal care
Observational studies
Time use
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Summary:Introduction: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases. Aim: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics. Design: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent’s last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs. Setting/participants: Adult national survey respondents – England. Results: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing ‘other care services’ were related to higher costs for other help only. Conclusion: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population.
ISSN:0269-2163
1477-030X
1477-030X
DOI:10.1177/02692163241259649