Caregiver-reported barriers and facilitators to hospice enrollment for persons with dementia: A systematic review of qualitative evidence.

Abstract

Background: Despite the increasing prevalence of dementia, persons with dementia often receive suboptimal care near the end of life. In many countries, specialized end-of-life support is offered by hospice. During the transitions to end-of-life care, caregivers play a crucial role in the decision-making and care provision for the persons with dementia. However, caregivers' experiences regarding the initial entry to hospice have not been comprehensively assessed in the dementia context.

Aim: To synthesize qualitative evidence on the caregiver-reported barriers and facilitators to hospice enrollment for persons with dementia.

Design: Systematic review and thematic synthesisData sources:We conducted a systematic literature search across PubMed, CINAHL, Embase, PsycINFO, and Scopus. We considered articles published between 2009 and 2024 that contained qualitative data on hospice entry collected from dementia caregivers.

Results: Twenty-two articles met our study eligibility criteria. Five themes were identified: (a) caregivers' observation and perception of severe stage dementia, (b) whether hospice was the right choice for persons with dementia, (c) burden due to the practical aspects of caregiving, (d) emotions and perception about death and hospice, and (e) guidance and access to hospice. These five themes encompassed 11 facilitators and 15 barriers.

Conclusions: Dementia caregivers experience intrapersonal, interpersonal, emotional, logistical, and physical challenges in ensuring quality end-of-life support for their loved one (e.g. limited understanding of end-stage dementia, gatekeeping providers, and family conflicts). The unique needs of caregivers caring for a seriously ill family member with dementia are not being fully addressed by the current available services and policies.