[A version of this item appears in: Dementia: the Latest Evidence Newsletter (RWHT), Volume 2 Issue 12, July 2012].
This Social Care Institute for Excellence (SCIE) research briefing examines the care provided in care homes to people with dementia towards the end of their lives. The main issues important to care home residents, carers and service providers have been identified:
- Dementia is a progressive condition and it is not always possible to know when the end of life is approaching. People with dementia do not always receive the end of life care they might have wanted.
- People with dementia may be willing and able to discuss preferences.
- 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 yet about implementing these wishes effectively.
- On moving into a care home there should be opportunities to discuss advance care plans sensitively (when a suitable moment arises). It is equally important to respect the wishes of people who do not want to specify in advance what end of life care they want.
- More research is needed into specialist palliative care support, the integration of these services for people dying in care homes, and training of care staff to recognise and respond to the need for palliative care.
- Training and support helps care staff gain confidence in discussing end of life issues.
- Making treatment decisions on behalf of persons with dementia can be an emotional burden for family carers, but care staff can help by explaining what is happening and what to expect. Good communication with staff is highly valued by family carers.
The bibliography is extensive. Useful links are supplied.
Moriarty, J. Rutter, D. [and] Ross, P. (2012). End of life care for people with dementia living in care homes. London: Social Care Institute for Excellence (SCIE), May 2011. 23p. SCIE Research Briefing No.40.