The first dedicated support tool for unpaid carers who grieve for an older person they care for before they have died is being developed by a team led by the University of Surrey. Grief before bereavement is a form of distress that affects an estimated one in four carers, which is rarely recognized and almost entirely unsupported.
The 18-month study, funded by the National Institute for Health and Care Research (NIHR), is led by Dr Richard Green and Dr Sarah Combes from Surrey, who will work with St Christopher's Hospice in South London to investigate the anticipatory grief experiences of unpaid adult carers looking after older people with complex health conditions. The team will then start to co-design a practical intervention to help them.
Anticipatory grief - the psychological distress people experience in anticipation of losing someone - is distinct from bereavement. It can begin with a diagnosis or a gradual decline, and it intensifies as a person's health deteriorates. For carers of older people with conditions such as severe frailty or multiple long-term illnesses, it can persist for months or years. Despite evidence linking anticipatory grief to poor sleep, anxiety, depression and reduced self-care, it sits largely outside the scope of existing support services, which are built primarily for people after a death has occurred.
At St Christopher's, we regularly see unpaid carers experiencing deep emotional strain long before a death occurs. Their anticipatory grief is real but too often overlooked. This research will help better understand these experiences and help shape practical support that reflects the realities of caring for older people with complex conditions. Unpaid carers make an extraordinary contribution, and they deserve recognition and support that truly meets their needs."
Dr. Mary Hodgson, Director of Inclusion & Social Innovation, St. Christopher's Hospice
The study deliberately excludes carers of people with dementia or cancer, where some research already exists, to focus on a population that has been largely overlooked - those caring for older people with multiple chronic conditions or severe frailty, where the trajectory is often slow, uncertain and without clear milestones.
Dr Richard Green, project lead and Lecturer at the University of Surrey, said:
"Most support for grief is designed for after someone dies. But for unpaid carers, the losses often begin long before that - of the person's independence, their recognition, and their capabilities. We want to understand what carers are actually going through and then build something with them that can help. This study is a starting point for that."
In the UK, there are an estimated 5.7 million unpaid carers in England. The total value of their contribution is put at £445 million per day, yet many do so at significant cost to their own health and wellbeing. Older carers are at particular risk, managing complex caregiving roles alongside their own ageing-related health challenges.
The STRENGTH Study (SupporTing REsilieNce Going THrough Anticipatory Grief) will run across three integrated work packages. An integrative literature review will map what is already known. A national survey of at least 200 unpaid carers across England, followed by in-depth interviews with 20 participants, will build a picture of the breadth and depth of carers' experiences. Those findings will then feed into a consultation process with key stakeholders to develop the building blocks for an anticipatory grief support approach.
Dr Sarah Combes, project co-lead, Senior Lecturer and NIHR Senior Research Leader: Nursing and Midwifery, at the University of Surrey and St Christopher's Hospice, said:
"Carers of older people living with frailty or complex health and care needs often face years of the person they care for gradually declining. The grief that comes with that doesn't fit neatly into existing interventions or services. This research will help us better understand their experiences, and with them, identify new ways to better meet their needs."
The study is part of a broader research program at Surrey focused on living, aging and dying well.
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