Measuring the cost of informal care

3rd November 2020

Research published today in BMC Medicine investigated the cost of informal care for people in the last 3 months of life. The research concluded that if they are well-supported, informal carers can play a role in providing care, and this can be done without detriment to them, providing they are helped.  The research can also be used to develop robust business cases for palliative care to develop services.

The research is part of an international study by a team of researchers based at the Cicely Saunders Institute, Trinity College Dublin, the University of Bristol, the University of California San Francisco and the Icahn School of Medicine at Mount Sinai, New York.  This is the first time that informal care costs have been compared internationally.  The research aimed to quantify and compare informal care costs in the different countries and identify carer burden, rewards and caregiver grief in relation to care quality. 

The researchers noted that more hours of informal care seemed to protect the carer in bereavement, and led to more positive feelings about caregiving.  It may be that informal carers providing more support were more prepared for death, and ensured that the person they cared for did not feel a burden to others.  These factors possibly protect against complicated grief.  It also suggests that informal carers can be part of a wider caring team and this is not harmful to them, but they do need support to allow them to do this well. Improving community palliative care could improve the value of care, the patient and carer experience and reduce carer burden whilst also lessening formal care costs. 

The study determined the informal care costs for older adults in the last 3 months of life, how these related to outcomes, and adjusted for care quality.  The study was carried out in palliative care services in England (London), Ireland (Dublin) and the United States (San Francisco and New York).

The 767 people who took part in the study were the informal carers of patients receiving palliative care who had died.  On average patients had received 66 – 76 hours of informal care per week. When the cost of this informal care was translated into financial equivalent value, informal care costs made up 58% of the overall costs of care.  The data provides insights into how to improve care value at the end of life, which is profoundly needed, and will help develop robust business cases for palliative care.  

Professor Irene Higginson, Scientific Director of Cicely Saunders International, and lead of the study said: “Family and friend carers do so much in helping people who need palliative care. Alongside being a wife, husband, partner, daughter, son, friend or other relation, our study shows the huge amount of practical help, advocacy, co-ordination and ‘being there’ that they provide. This costs more to society that do the formal care services, and when home care is of poor quality the burden on informal carers increases.”

Dr Steve Pantilat, from the University of California, San Francisco said: “Family and friends provide tremendous help with the practical and emotional issues that people need as they approach the end of life. We know that this kind of help is priceless and unpaid. We learned that, if paid, the care provided by family and friends would cost more than all the formal care provided by the healthcare system. In addition, caregiving while seen as a privilege for many, also takes its toll on the caregiver. As a society we need to recognise and support these caregivers to keep them healthy and to allow them to continue to care for their loved ones. Palliative care services are among the ways that we can better support caregivers to improve the quality of life for them and the person they are caring for.”

Higginson, I.J., Yi, D., Johnston, B.M. et al. Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study). BMC Med 18, 344 (2020). https://doi.org/10.1186/s12916-020-01768-7

The IARE 1 study is part of the BuildCARE programme, funded by Cicely Saunders International and The Atlantic Philanthropies.