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Prim Health Care Res Dev. 2014 Oct;15(4):406-17. doi: 10.1017/S146342361300039X. Epub 2013 Nov 26.

Palliative and end of life care for people with dementia: lessons for clinical commissioners.

Author information

  • 11Department of Primary Care and Population Health,University College London,Royal Free Campus,London,UK.
  • 22Department of Geriatric Medicine,School of Medicine,Cardiff University Academic Centre,Penarth,UK.
  • 33Social Care Workforce Research Unit,King's College London,Strand,London,UK.



To synthesize information about management of end of life care in people with dementia using review papers.


There are increasing numbers of people being diagnosed with dementia worldwide, and the needs of people with dementia and their carers at the end of life may be different from those with other chronic diseases. By highlighting the challenges of palliative care in persons with dementia and the ways they are best managed, practitioners in primary care may be able to improve services for this group of people at the end of life.


A search of electronic databases of English language papers published in peer-reviewed journals, 2000-2011 inclusive was undertaken using broad terms related to palliative care and dementia. 6167 papers were identified. Titles and abstracts were read. Papers were included if they were literature reviews of palliative or end of life care for people with dementia/Parkinson's disease/Lewy body dementia/cognitive impairment/Alzheimer's disease or any other cognitive impairment, in any setting (hospital, care home, community) and covering people of all ages. Papers were excluded if they covered palliative care focusing on other conditions, or were about an aspect of dementia care and treatment not related to palliative care.


Our critical synthesis generated five main themes from this review of the reviews: (1) carers' (family caregivers') experiences; (2) person-centred care; (3) practice (including advance care planning, pain and comfort, nutrition, medical complications and minimizing the distress of behavioural symptoms); (4) system factors, including ethical dilemmas, decision making, information, and training; and (5) research priorities. There appears to be good evidence on the care and management of patients with dementia at the end of life which can be used to influence policy development and emerging specificity about research priorities in palliative care practice for people with dementia.

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