Many people in England choose to spend their retirement by the sea or in the countryside, drawn to the clean air and a more relaxed pace of life. As a result, areas such as the south coast have a significant and growing older population.
Image above: A view of golden fields and Exmoor in the background. Photo by Craig Cameron on Unsplash
With longer lives come evolving health and care needs, particularly in relation to conditions such as dementia. As the UK population ages, the number of people living with dementia is expected to rise by 80% by 2040, with around 220,000 people each year projected to die with the condition. Ensuring that local health and care services adapt to support people to live well in later life is increasingly important.
Access to specialist palliative care is essential to manage dementia symptoms, helping to reduce distress for patients and their relatives. But people living with dementia in rural areas often find it harder to access these services. Large distances to cover mean less care is provided at people’s homes by community-based services. Instead, people may be forced to travel a long way to access their nearest services, which can be difficult with poor local transport links. The result is less effective care, which is not focused on the patient’s needs.
Palliative and end of life care researchers at the ARC are launching new research to understand more about people’s experiences of palliative and end of life care in rural areas. They will focus on the south-west, a rural region stretching from Cornwall and Devon to Gloucestershire, Somerset and Wiltshire. The area has fewer major cities compared to other parts of the country, and one of the largest proportions of people aged over 85 years.
Professor Irene Higginson, the ARC’s palliative and end of life care research theme lead and professor of palliative care and policy at King’s College London, who is leading the research, says: “The south-west has fewer emergency hospital visits for people with dementia, the highest number of rural deaths, more deaths at home and in care homes, and fewer deaths in hospital and hospice. While this could suggest good quality care, it may also mask a lack of access to specialist services in the region. Our research will explore the realities of care experienced by people living with dementia and generate evidence to help plan rural services.”
The overall aim of the project is to describe and compare the provision of palliative and end of life care and health care use in rural and urban areas in England for people living with dementia, and to explore experiences of palliative and end of life care in rural England.
In 2023, the UK’s Chief Medical Officer urged for an improvement to health and social care infrastructures in rural areas to ensure care is sufficient for the expected growth of the older population in these areas. However, in the UK, those who make decisions about care and develop policy do not have sufficient information to deliver solutions to improve care or plan future services. This research will help to address this gap in evidence.
The south-west is expected to experience the largest growth in its older population than any other region in the UK. This makes it an extremely important and interesting region to focus on to identify the specific issues around access to palliative and end of life care that people living with dementia face in rural areas of England
The project is organised around four objectives. The research team will:
The researchers will create a patient and public involvement group to support the planning, analysis and interpretation of the research. Members will be recruited from across the south-west, at memory cafes, hospices and other dementia-specific groups. The researchers will also convene a clinical expert panel to ensure clinical understanding and relevance.
The researchers will be collaborating with the charities Cicely Saunders International, Dementia Research UK and Hospice UK, and Rowcroft House Hospice in Torbay, Devon.
The project began in June 2024 is expected to complete in May 2027. It is funded by Cicely Saunders International and Dementia Research UK.
