Palliative care for people with dementia living at home: A systematic review of interventions

Abstract

Background: The European Association for Palliative Care White Paper defined optimal palliative care in dementia based on evidence and expert consensus. Yet, we know little on how to achieve this for people with dementia living and dying at home. Aims: To examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps. Design: A systematic review of home palliative care interventions in dementia. Data sources: The review adhered to the PRISMA guidelines and the protocol was registered with PROSPERO (CRD42018093607). We searched four electronic databases up to April 2018 (PubMed, Scopus, Cochrane library and CINAHL) and conducted lateral searches. Results: We retrieved eight relevant studies, none of which was of high quality. The evidence, albeit of generally weak quality, showed the potential benefits of the interventions in improving end-of-life care outcomes, for example, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support. Other European Association for Palliative Care domains identified as important in palliative care for people with dementia, for example, prognostication of dying or avoidance of burdensome interventions were under-reported. No direct evidence on facilitators and barriers to implementation was found. Conclusions: The review highlights the paucity of high-quality dementia-specific research in this area and recommends key areas for future work, for example, the need for process evaluation to identify facilitators and barriers to implementing interventions.

Care preferences of healthy, middle‐aged adults in Japan and the USA if they acquired dementia: A cross‐sectional observational study

“…As many general practitioners are struggling to obtain the resources to address the behaviors and symptoms of dementia, middle‐aged adults might suppose that professional home care services are inadequate for people with dementia who require regular supervision . Some dementia‐care programs have been developed to help home‐care professionals address behavioral changes in dementia . National dementia policies should make such programs available for people living with dementia in their own homes, as well as those in nursing homes.…”

“…26 Some dementia-care programs have been developed to help home-care professionals address behavioral changes in dementia. 27 National dementia policies should make such programs available for people living with dementia in their own homes, as well as those in nursing homes.…”

“…This study protocol was approved by the ethics review board of the Tokyo Metropolitan Institute of Medical Science, Japan (No. [18][19][20][21][22][23][24][25][26][27], and was carried out in accordance with the Helsinki Declaration of 1975, as revised in 2013. Their continued participation was considered indicative of their consent to the questionnaire instructions provided on the website.…”

Context, Mechanisms and Outcomes in End of Life Care for People with Advanced Dementia: Family Carers Perspective

“…Despite the increased need for optimal EOL care in dementia, there remains gaps in quality and consistency in long-term care settings, where provision is often uncoordinated and reactive [12][13][14][15] and many residents continue to experience unnecessary and burdensome interventions [16]. Similarly, a recent review of palliative dementia care interventions delivered at home has highlighted striking gaps in the evidence [17]. For example, although people with dementia experience burdensome transitions near the end-of-life with on average of two admissions in the last year of life [18], only one study explored the effect of a palliative care intervention on reducing burdensome and potentially unnecessary treatments at the EOL for those residing at home [17].…”

“…Similarly, a recent review of palliative dementia care interventions delivered at home has highlighted striking gaps in the evidence [17]. For example, although people with dementia experience burdensome transitions near the end-of-life with on average of two admissions in the last year of life [18], only one study explored the effect of a palliative care intervention on reducing burdensome and potentially unnecessary treatments at the EOL for those residing at home [17]. These findings highlight that although keeping people with dementia at home for longer is a key government goal [19] we know very little about how we can achieve this especially for those at the advanced stages of dementia.…”