A scoping review of the evidence for community-based dementia palliative care services and their related service activities

Niamh O'Connor, Siobhan Fox, W.George Kernohan, Jonathan Drennan, Suzanne Guerin, Aileen Murphy, Suzanne Timmons

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Abstract

Background: Palliative care is identified internationally as a priority for efficacious dementia care. Research into “effective models” of palliative care for people with dementia has been recommended by several European countries. To build an effective service-delivery model we must gain an understanding of existing models used in similar settings. The study aim is to identify core components of extant models of palliative care for people with dementia, and their families, who are living at home in the community. Methods: A scoping review was employed. The search strategy was devised to identify all peer-reviewed research papers relating to the above aim. This process was iterative, and the search strategy was refined as evidence emerged and was reviewed. All types of study designs and both quantitative and qualitative studies of non-pharmacological interventions were considered for inclusion. Results: The search identified 2,754 unique citations, of which 18 papers were deemed eligible for inclusion. Although a palliative care approach is recommended from early in the disease process, most evidence involves end-of-life care or advanced dementia and pertains to residential care. The majority of the research reviewed focused on the effects of advance care planning, and end-of-life care; specialist palliative care input, and/or generalist palliative care provided by dementia services to enable people to remain at home and to reduce costs of care. Community staff training in palliative care appeared to improve engagement with Specialist Palliative Care teams. Integration of dementia and palliative care services was found to improve care received for people with dementia and their carers. Conclusions: While the evidence for integration of dementia and palliative care services is promising, further high-quality research is necessary particularly to identify the key components of palliative care for people living with dementia. This is imperative to enable people with dementia to inform their own care, to stay living at home for as long as possible, and, where appropriate, to die at home.

Original languageEnglish
Article number32
Pages (from-to)1-20
Number of pages20
JournalBMC Palliative Care (Biomed central)
Volume21
Issue number1
Early online date9 Mar 2022
DOIs
Publication statusE-pub ahead of print - 9 Mar 2022

Bibliographical note

Funding Information:
This research was supported by a grant from the Health Research Board (ILP-HSR-2017-020). The funding body had no influence on the conduct or the reporting of this research.

Publisher Copyright:
© 2022, The Author(s).

Keywords

  • Dementia
  • Alzheimer’s disease (AD)
  • Palliative Care
  • Community care
  • Alzheimer’s disease
  • Palliative care

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