ORCID

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.

Publication Date

2024-06-22

Publication Title

Palliative Medicine

Volume

38

Issue

7

ISSN

0269-2163

Acceptance Date

2024-05-19

Deposit Date

2024-08-08

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the University of Hull (carers question set inclusion in the HSE 2017 survey); the National Institute for Health Research (Professor Fliss Murtagh [Director of the Wolfson Palliative Care Research Centre] is a National Institute for Health and Care Research (NIHR) Senior Investigator. Statistical analysis time was kindly funded through Fliss Murtagh\u2019s award. The views expressed in this article are those of the authors and not necessarily those of the NIHR, or the Department of Health and Social Care); and the INSPIRE undergraduate research programme (Gamze Keser). The INSPIRE scheme is coordinated by the Academy of Medical Sciences and supported by the Wellcome Trust.

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

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Additional Files

Revised_manuscript_clean.pdf (479 kB)

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