End of life care for people with dementia living in care homes

Key messages • Dementia is a progressive condition but it is not always easy for care staff and family carers to tell when the end of life is approaching. This means that people with dementia sometimes do not receive the end of life care they would have wanted. • People with dementia may be willing and able to discuss preferences even when they are no longer considered to have the capacity to make advance decisions in their legal form. • Advance care plans, or similar expressions of views, are important ways in which people with dementia can express their wishes about end of life care. Not enough is known about how to implement these wishes effectively, especially where there is disagreement between a person's advance care wishes and the views of family members or professionals. • When a person moves into a care home, there should be opportunities to discuss advance care plans sensitively at a carefully chosen time or when the moment arises. However, it is also important to respect the wishes of people who do not want to specify in advance what end of life care they wish to receive. • There is little research on the provision of specialist palliative care support and the integration of services for people dying in care homes. There is also a lack of research on the training of care staff to recognise and respond to the need for palliative care. • Care staff may find it difficult to raise the subject of end of life care, but training and support will help them become more confident. • Making treatment decisions on behalf of another person places an emotional burden on family carers, but care staff can help by informing them about what is happening and what to expect. Good communication with staff is highly valued by family carers.