Characteristics and population estimates of unpaid end of life carers: an observational study

Background: Improving support for unpaid carers is a policy priority internationally, yet there are few reliable population estimates on numbers of end of life carers, and little is known about the demographic characteristics of this group. Aim: (1) Estimate the number of unpaid end of life carers in the UK; (2) Describe demographic characteristics of this group. Design: An observational study using data from the UK Household Longitudinal Survey (Understanding Society), Health Survey for England and the Office for National Statistics to estimate the number of end of life carers in the UK. Understanding Society was used to explore characteristics of end of life carers including poverty before and after bereavement. Participants: Understanding Society collects annual data on around 40,000 households in the UK, including carers. Results: Data from Understanding Society suggests there are 150,000–180,000 unpaid end of life care in the UK each year, while data from Health Survey for England suggests a higher estimate at 570,000–775,000 carers. End of life carers are more likely to be older and female. There is an increase in the percentage of carers falling into poverty one year after they provided care. Conclusions: These analyses have provided the first estimate of the number of end of life carers in the UK, using methods which are replicable in other countries. Our data provide a useful benchmark both for the UK and for other comparable high income countries. Many end of life carers are living in poverty, including after bereavement, showing a need for policy initiatives to provide support.