ORCID
- Jade Chynoweth: 0000-0002-2516-5923
- V Allgar: 0000-0002-5228-2623
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.
DOI
10.1177/02692163241259649
Publication Date
2024-06-22
Publication Title
Palliative Medicine
Volume
38
Issue
7
ISSN
0269-2163
Keywords
Caregivers, Costs and cost analysis, End-of-life, Informal carers, Survey, costs and cost analysis, end-of-life, survey, informal carers, Friends, Humans, Middle Aged, Family/psychology, Cost of Illness, England, Male, Young Adult, Caregivers/economics, Aged, 80 and over, Adult, Female, Surveys and Questionnaires, Terminal Care/economics, Adolescent, Health Care Costs/statistics & numerical data, Aged
First Page
725
Last Page
736
Recommended Citation
Johnson, M., Currow, D., Chynoweth, J., Weatherly, H., Keser, G., Hutchinson, A., Jones, A., Dunn, L., & 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, 38(7), pp. 725-736. Available at: https://doi.org/10.1177/02692163241259649
