End of Life Care and Dementia: A Hermeneutic Phenomenological Exploration of Community-Dwelling Black African-Caribbean Older People Living with Dementia and Family Carers

Background: Dementia is a public health issue and a life-limiting condition. Compared to patients with other life-limiting diseases such as cancer, people living with dementia (PLWD) generally receive poor care at the end of life (EoL). Person-centred and culturally responsive end of life care (EoLC) supports individuals to die well and helps their families and carers. Currently, there is no cure for dementia, and most recent evidence suggests increasing prevalence within UK black, Asian and minority ethnic (BAME) groups. Despite this, there is little current UK-based evidence on EoLC for BAME communities with dementia. Within the wider UK BAME community, the voice of black African and black Caribbean PLWD and their families is rarely heard in EoLC research in the context of dementia.

Aim: To explore EoLC among community-dwelling older people from black African and black Caribbean backgrounds who are living with dementia.

Methods: Three, inter-related, qualitative studies were conducted, guided by van Manen’s hermeneutic phenomenological approach. The first study involved two focus groups with older African-Caribbean PLWD (n=13) in ascertaining what, if any, would be significant at the EoL, drawing on their lived experiences. The second and third studies involved in-depth phenomenological interviews with bereaved family caregivers (n=6) and family carers (n=7). All participants (n=7 African and n=19 Caribbean) identified as African-Caribbean.

The recruitment strategy involved establishing trust with ‘gatekeepers' and prospective participants. Purposive sampling was used in all studies. Template Analysis was applied alongside van Manen’s phenomenological data analysis approach to make sense of participants’ experiential material.

Findings: Three core themes and subthemes emerged from the analysis:
• ‘I don’t want to die in old people’s home’: Negotiating preparedness for the EoL, A journey through the undergrowth; Yearning for quality of life at the EoL.
• Making sense of unfolding events by faith to God: ‘living in fear of making wrong EoLC decisions'; Two sides of the coin.
• Living with uncertainty and continuous change: ‘God knows what He is doing’; Suffering in silence; Anticipatory loss; At the crossroads.

PLWD and family carers drew extensively on their religious and cultural understandings of dementia and EoLC. For all the participants, their Christian faith formed the basis on which understandings, perceptions, hopes and wishes concerning EoLC were made. There was a shared understanding that it is God who gives and takes life, so planning was not perceived as necessary. There was a lack of understanding of how dementia progresses as an illness, and reluctance to recognise signs of early dementia appeared to be associated with lost opportunities for early discussions regarding future care needs. For many, religion was not merely a set of beliefs or common faith in God, but rather, it was a phenomenon embedded within their everyday living practices.

Methodologically, the study demonstrates the potential of van Manen’s hermeneutic phenomenological approach in psychological healthcare research. It also reinforces focus groups as a suitable data collection approach in research involving PLWD.

Conclusion: The research programme highlights a need to avoid being dissuaded by the term ‘hard to reach’ but to develop appropriate research methodologies for BAME groups. When working with BAME groups, considerations of their religious and cultural beliefs could help to encourage them to access dementia and EoLC services. More UK based research on EoLC is urgently needed to ascertain what if any would be significant for minority ethnic PLWD.