The UK population is aging: in 2016, the Government Office for Science predicted that nearly one in seven people will be over the age of 75 by 2040. This trend is reflected by an increase in cases of dementia. Alzheimer’s Society UK projects that there will be 1.6 million people living with dementia in the UK in 2050, compared to approximately 900,000 in 2023. Given these stark trends, healthcare policies, practices, and resource allocation need careful implementation to ensure that older patients living with dementia receive high-quality care that responds to their needs and aligns with their values.

Using qualitative research methods, we investigate how health and social care practices, policies, and cultures at institutional, local, and national levels shape the experiences of care for patients living with advanced dementia in the UK, as well as their caregivers and clinicians. We are interested in how these elements can support the delivery of high-quality care for patients with advanced dementia and and how they influence clinical decision-making, including decisions to limit high-intensity, potentially non-beneficial treatments towards the end of life.

In doing this work, we aim to characterize the landscape of care for patients with advanced dementia in the UK, identifying the strengths and weaknesses of current policies and practices and finding ways to improve care that may be applicable in other contexts, such as the US.