A team led by the University of Surrey announced on June 30 that it is developing the first dedicated support tool for unpaid carers who experience grief before the death of an older person they care for. This form of distress, known as anticipatory grief, affects an estimated one in four carers and is rarely recognized or supported.
The 18-month study is funded by the National Institute for Health and Care Research and led by Dr. Richard Green and Dr. Sarah Combes from Surrey. The researchers will collaborate with St Christopher's Hospice in South London to investigate anticipatory grief among unpaid adult carers looking after older people with complex health conditions. The project aims to co-design a practical intervention to help these carers.
Anticipatory grief refers to psychological distress experienced in anticipation of losing someone, often beginning with a diagnosis or gradual decline and intensifying as health deteriorates. For those caring for older people with severe frailty or multiple long-term illnesses, this grief can persist for months or years. Despite evidence linking anticipatory grief to poor sleep, anxiety, depression, and reduced self-care, existing support services primarily address bereavement after death.
The study excludes carers of people with dementia or cancer—areas where some research exists—to focus on those supporting individuals with multiple chronic conditions or severe frailty. Dr. Richard Green 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 England alone there are an estimated 5.7 million unpaid carers whose contribution is valued at £445 million per day; many face significant impacts on their own health.
The STRENGTH Study (SupporTing REsilieNce Going THrough Anticipatory Grief) includes three work packages: an integrative literature review; a national survey involving at least 200 unpaid carers across England followed by interviews; and stakeholder consultations to develop elements of an anticipatory grief support approach.
Dr. Sarah Combes 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 project forms part of broader research at Surrey focused on living, aging and dying well.
