• Miriam J Johnson, David C Currow, Jade Chynoweth, Helen Weatherly, Gamze Keser, Ann Hutchinson, Annie Jones, Laurie Dunn, and Victoria Allgar.
• Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.
• Palliat Med. 2024 Jul 1; 38 (7): 725736725-736.

IntroductionLittle 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.AimTo estimate informal caregiving costs and explore the relationship with carer and decedent characteristics.DesignNational 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/ParticipantsAdult national survey respondents - England.ResultsA 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.ConclusionWe 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.

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