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

Johnson, Miriam J.; Currow, David C.; Chynoweth, Jade; Weatherly, Helen; Keser, Gamze; Hutchinson, Ann; Jones, Annie; Dunn, Laurie; Allgar, Victoria

Abstract

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.

Citation

Johnson, M. J., Currow, D. C., Chynoweth, J., Weatherly, H., Keser, G., Hutchinson, A., …Allgar, V. (2024). The cost of providing care by family and friends (informal care) in the last year of life: A population observational study. Palliative medicine, https://doi.org/10.1177/02692163241259649

• Journal Article Type: Article
• Acceptance Date: May 19, 2024
• Online Publication Date: Jun 22, 2024
• Publication Date: 2024
• Deposit Date: May 21, 2024
• Publicly Available Date: Jun 27, 2024
• Journal: Palliative Medicine
• Print ISSN: 0269-2163
• Electronic ISSN: 1477-030X
• Publisher: SAGE Publications
• Peer Reviewed: Peer Reviewed
• DOI: https://doi.org/10.1177/02692163241259649
• Keywords: Caregivers; Informal carers; End-of-life; Costs and cost analysis; Survey
• Public URL: https://hull-repository.worktribe.com/output/4670981