SCIE Research briefing 40: End of life care for people with dementia living in care homes

By Jo Moriarty, Deborah Rutter, Paul D S Ross and Pamela Holmes

Published: May 2012

Review date: May 2015

Introduction

This research briefing is about the care provided in care homes to people with dementia in the period leading up to the end of their lives. It aims to provide an overview of a range of issues important to care home residents, carers and providers.

The term ‘family carer’ as used in this briefing implies a person or people identified by the person with dementia (if possible) as important to them, and is intended to cover a spouse, partner, child, other relative or friend and supporter.

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.

About the development of this product

Scoping and searching

Three pre-scopes were undertaken in July 2011 due to the variety and amount of content on the topics of dementia, care homes and end of life care. A research analyst reviewed the data from the pre-scopes and drafted inclusion and exclusion criteria to inform subsequent searches. Full searching began in August through to November 2011. Additional searching was undertaken for user views and carer views, along with searching in key journals: both were completed in December 2011.

Peer review and testing

The authors have research and topic expertise. This research briefing was peer reviewed both internally by Professor Mike Fisher and externally by Professor Malcolm Payne. The authors would also like to thank, Professor Claire Goodman and the EVIDEM team, Professor Jill Manthorpe and Professor Steve Iliffe.

About SCIE research briefings

SCIE research briefings provide a concise summary of recent research into a particular topic and signpost routes to further information. They are designed to provide research evidence in an accessible format to a varied audience, including health and social care practitioners, students, managers and policy-makers. They have been undertaken using methodology developed by SCIE. The information on which the briefings are based is drawn from relevant electronic databases, journals and texts, and where appropriate, from alternative sources, such as inspection reports and annual reviews as identified by the authors. The briefings do not provide a definitive statement of all evidence on a particular issue. SCIE research briefing methodology was followed throughout (inclusion criteria; material not comprehensively quality assured; evidence synthesised and key messages formulated by author).

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