David Truswell,Supporting people living with dementia in Black,Asian and minority ethnic communities

In 2020 our understanding of social determinants of health and how intersectionality and identity is directly related to health has grown and enables us to have a deeper understanding of the care needs of underrepresented groups. The book appeals not only to health and social care providers, but also to people living with dementia and their families. It is written in an accessible and easy to read format so that even for those unfamiliar with the concepts of equity, diversity, inclusion and safety, a clear picture is presented of the issues facing Black, Asian and Minority Ethnic (BAME) groups living in the UK The book opens with an introduction and presents the structure and rationale for the intention of the book. This includes a description of how the authors of each chapter are representative of the groups that they are describing. It is not infrequent that we see researchers from dominant (majority) ethnic groups that speak on behalf of underrepresented groups and the thoughtful attention to this detail in this book is therefore significantly meaningful.

The book’s following five chapters each describe a specific cultural experience of a BAME group in the UK including the Irish population in the UK, African-Caribbean communities, South Asian communities, Chinese communities, and Jewish communities. These chapters are written by members of each of these specific groups in order to highlight specific issues and gaps in care and services. Additionally, each chapter includes the voices of people living with dementia or family care partners. The authors of each chapter present rich description of the lived experiences of members of BAME communities and why it is important to consider each group when we are designing dementia care services or planning ways in which to support families. Stigma around mental health within communities can prevent the person living with dementia or families to acknowledge the need for additional support, and can prevent families from asking for support within or outside of their own community networks. Moreover, the authors demonstrate that in some cases, a biased expectation of care providers that BAME communities will inherently provide within-group, culturally safe support shows a lack of cultural competency and may lead to poorer quality of life and health outcomes for people living with dementia and their families. Indeed, even thoughtfully-developed interventions like reminiscence therapy needs to be reconsidered for BAME groups when we think about potential experiences, trauma, and the possibility that lived experiences and long term memories may be vastly different than someone raised in the manner of the dominant British society.

The three chapters that follow describe the cross-cutting issues that are more likely to impact members of BAME communities in more meaningful ways. These cross-cutting issues are focused on human rights, spirituality, and, broadly other issues. The other issues chapter includes important factors for dementia care, including interpreting and translation for people living with dementia who may speak rare dialects of their first language; the financial impact of dementia that recognized members of BAME communities may experience more financial insecurity for a variety of reasons; inappropriate reminiscence materials; risk of elder abuse including the assumption that ‘matching’ cultural backgrounds of care staff to service user will ensure safety; and finally: inappropriate end of life care. The last contributed chapter is told from the voice of a carer, Dr Shibley Rahman, a powerful account of learning to care for his mother, told with his mother’s full and informed consent. Dr Rahman’s story of becoming a carer and learning what this meant for him and his family was moving and emphasized how important it is to include all voices when planning services and person-centred care.

David Treswell provides a summary chapter to conclude the volume where he describes the important key messages of the book. It is important to understand that a member of a BAME community may experience dementia in a different way to the white British population, and may understand dementia differently than even their children. There are a number of critical learnings for anyone working with people living with dementia and their families, including recommendations for adequate funding for services, dedicated research initiatives and associated financial support, repositories of culturally safe intervention materials, and innovative approaches to supporting families and communities.

Though this book is concentrated on BAME experiences of dementia in the UK, there are parallels to some of the same social drivers and determinants of health that impact cognition and aging in minority or underrepresented populations in other countries. Indeed, culturally humility, trauma-informed and person-centred dementia care can provide ways for us to proceed in safe ways to provide better care and improve lived experiences of dementia for these groups. This book challenges many assumptions about working with minority communities and the supports and cultural needs of such communities; a challenge that is long overdue in dementia care provision and research. This will prove to be a valuable resource for anyone looking to deepen their understanding of issues affecting BAME communities in the UK and underrepresented groups more broadly.