Dementia, Culture and Ethnicity

Issues for All

Julia Botsford, Karen Harrison Harrison Dening

• Publisher: Jessica Kingsley Publishers
• Year: 2015
• ISBN:
  9780857008817
• Topic: Social Sciences
• Subtopic: Gerontology
• Index: Social Sciences

With contributions from experienced dementia practitioners and care researchers, this book examines the impact of culture and ethnicity on the experience of dementia and on the provision of support and services, both in general terms and in relation to specific minority ethnic communities.

Drawing together evidence-based research and expert practitioners' experiences, this book highlights the ways that dementia care services will need to develop in order to ensure that provision is culturally appropriate for an increasingly diverse older population. The book examines cultural issues in terms of assessment and engagement with people with dementia, challenges for care homes, and issues for supporting families from diverse ethnic backgrounds in relation to planning end of life care and bereavement. First-hand accounts of living with dementia from a range of cultural and ethnic backgrounds give unique perspectives into different attitudes to dementia and dementia care. The contributors also examine recent policy and strategy on dementia care and the implications for working with culture and ethnicity.

This comprehensive and timely book is essential reading for dementia care practitioners, researchers and policy makers.

1

INTRODUCTION

____________Julia Botsford____________

This book is about the relationship between culture, ethnicity and dementia. It explores the ways in which ethnic and cultural identities impact on people with dementia, their families and friends, as well as those who seek to diagnose, treat, care for and provide services for them. It is aimed at anyone who works in the field of dementia care or who is interested in this area. It is, as far as we know, the first book of its kind to be published in the UK.

Dementia, culture and ethnicity in context

Dementia is a growing global concern. Around 800,000 people in the UK and 44 million worldwide are currently estimated to have Alzheimer’s disease or another form of dementia (Alzheimer’s Research UK 2014), and these numbers are set to increase exponentially in the coming decades.

Wherever you are in the world, the likelihood of being affected by dementia is already huge. To illustrate, in 2010 the Alzheimer’s Research Trust estimated that as many as 25 million people (42% of the UK population) were affected through knowing a close friend or family member with the condition (Alzheimer’s Research Trust 2010). And yet, how we perceive the many and varied impacts of dementia, as well as the ways in which we react, is not the same for everyone. There is growing evidence that ethnicity and cultural backgrounds are significant in relation to how both individuals and communities deal with the onset of the cognitive changes associated with dementia. In addition, ethnicity and culture appear to have an impact on how people are supported, or not, by family, communities and statutory and non-statutory services, through the experience of living and dying with dementia.

Much of the research about dementia and ethnicity has, until recently, been conducted in the US. However, whilst evidence from the US tells us about the significance of ethnicity and culture in relation to the ethnic groups that are found in the US, we must be cautious about making assumptions about its relevance to the UK experience and to the specific ethnic communities living in the UK. For the time being, the evidence base in the UK remains relatively small. However, it is increasing, as it must if we are to fully understand the complexities surrounding the experiences of dementia in different groups. This is a point made more than once in the pages that follow.

Nevertheless, it is only recently that the importance of understanding and responding to cultural needs in dementia has gathered any significant momentum in the UK. Policy-makers and service providers alike are now finally recognising that an increasing cultural diversity among the UK older population will mean a need to re-examine how services operate (APPG on Dementia 2013) as well as a need to address the specific information and awareness needs of minority ethnic groups, who often present later than other groups, or only in crisis (Mukadam, Cooper and Livingston 2011).

Dementia, culture and ethnicity: issues for us all

Whilst many of the chapters in this book focus on minority ethnic groups, it is important to recognise that culture and ethnicity are not only the preserves of minorities. They embrace everyone, even if unnoticed or taken for granted, in our everyday lives. We may not focus on such issues, except when ticking a box on a form, but nevertheless, we all have an ethnicity, however we might define it. Our culture and ethnicity affect who we are, how we see the world and how we behave. They also influence how we are perceived by others, and therefore impact on the way we develop and maintain relationships – be they personal or professional.

My own interest in the issues covered in this book arose many years ago. For over a decade my clinical practice has been as an Admiral Nurse in a culturally diverse borough of North London. Admiral Nurses work with other professional colleagues to improve the quality of life for people with dementia and their families, using two main approaches – clinical casework with carers and people with dementia, and through a teaching and advisory role to other professionals.

In common with many parts of the capital city, there are areas where I work where ‘White British’ could be considered a minority ethnic community. As a White British Admiral Nurse I often found myself working with people from different cultural backgrounds to my own, and over the years became increasingly interested in the links between culture, ethnicity and the experience of living with dementia. This led me to undertake doctoral research with issues of ethnicity at its core, exploring couple relationships through the experiences of Greek Cypriot and African Caribbean partners of people with dementia (Botsford 2010; Botsford, Clarke and Gibb 2012). This study is briefly referred to later, in Chapter 8.

The initial idea for this book came out of a symposium session titled ‘Dementia, Culture and Ethnicity: Issues for Us All’, which took place at the 2012 National Dementia Congress in Brighton, which I organised and presented along with my Dementia UK¹ colleagues Joy Watkins, Vincent Goodorally, Christine Gillham and Manjit Kaur Nijjar – the latter a member of the Uniting Carers network², whose personal story, along with those of several others, can be found in Chapter 12.

The symposium session touched on many of the core themes that have found their way into this book. As part of this symposium we presented a video in which people from different cultural and ethnic backgrounds responded to the question, ‘What do my culture and ethnicity mean to me?’ The range of responses highlighted the fact that they are, indeed, issues for everyone, and that people’s own perspectives on their own culture and ethnicity are unique. Although the issues may seem most pertinent to minority ethnic communities, it is a fallacy to assume that they are not relevant, or indeed, highly important, to everybody, whoever they are.

Use of terms

In writing and talking about culture and ethnicity there are sensitivities and ambiguities that need to be acknowledged. The English language is constantly evolving, with terms that might have been considered acceptable in the past now considered at best naive or at worst racist. These changes derive from broader shifts in attitudes, as well as from increasing awareness and appreciation of difference within a multicultural society. However, whilst these changes are positive in themselves, it is worth acknowledging the risk that the imperative to employ only ‘politically correct’ language, if coupled with uncertainty about what this actually means, could get in the way of the genuine and open debate needed in this area.

The expressions ‘black and minority ethnic’ (BME) and ‘black, Asian and minority ethnic’ (BAME) are both terms commonly found in the literature. In this book we have made an editorial decision to use the term ‘black and minority ethnic’ (BME) as the principle term for any individual group who, by virtue of numbers and in relation to ethnicity, is in a minority. This term includes both white and non-white (including Asian) groups and individuals. Adoption of one term is intended to reduce any confusion. We have also tended to use the term ‘minority ethnic’ in preference to ‘ethnic minority’ – again these are both terms in common use in the literature and common parlance. The term ‘minority ethnic’ is preferred here because it stresses the fact that everyone belongs to an ethnic group, and the one under consideration is in a minority. The alternative, ‘ethnic minority’, suggests that the group in question is in a minority because of its ethnic nature. These may seem subtle distinctions, but again, to avoid confusion, we have decided to use this term throughout.

Structure and content of the book

This book collects together writings by some of the key experts in the developing field of dementia, culture and ethnicity. Contributors include researchers, practitioners and importantly, family carers. These contributions from family carers give a powerful and often moving window into what it is like for families living with dementia. We were unable to include any accounts from people with dementia from a minority ethnic background, but it is hoped that as awareness increases and stigma reduces, more people will be willing to come forward to share their experiences.

In Chapter 2, Omar Khan from the Runnymede Trust³ gives a detailed and comprehensive analysis of the implications of two major social trends – the increase in the relative number of older people, coupled with the increasing ethnic diversity within the older age group.

Chapter 3 is about meanings. It highlights the complexity and nuances in how the everyday terms of ‘race’, ‘culture’ and ‘ethnicity’ are used, and teases out their explicit and implicit meanings before going on to look at how culture and ethnicity impinge on our attitudes towards health and disease, and on people’s understandings of dementia.

Chapter 4, by Ajit Shah and Sofia Zarate Escudero, examines the issues from a medical perspective. This chapter pieces together what is known about the prevalence of dementia in specific ethnic groups, through a detailed review of available evidence. This evidence seems to suggest that some groups may be more at risk than others, although people from minority ethnic groups tend to be less well represented in terms of service uptake. Shah and Zarate Escudero consider some of the obstacles that people from minority ethnic groups may face in accessing an accurate diagnosis, and they make a plea for greater attention to address these issues at a local and national level.

The next chapter, by Jo Moriarty, picks up many of the same issues, but from a social perspective, exploring culture and ethnicity in relation to attitudes towards dementia, diagnosis and service uptake. She not only explores why uptake may be lower in BME groups but also why, having accessed them, their experiences may be less positive. She emphasises that the resultant health inequalities need to be better understood through research, as well as better addressed by service providers.

In Chapter 6 Karan Jutlla, who researched dementia within the Wolverhampton Sikh community, vividly illustrates many of the points made in the two preceding chapters. She examines in depth the experiences of dementia and caregiving within South Asian communities in the UK. The importance of cultural norms associated with attitudes to caregiving and family roles, as well as the very real stigma attached to mental ill health and dementia, have major implications for awareness-raising and service provision in these groups.

In Chapter 7 Vincent Goodorally explores some of the challenges service providers need to consider in order to engage effectively in their work with people from minority ethnic groups. He stresses the importance of a meaningful assessment process, and introduces a specific tool that offers a framework to help practitioners to assess cultural needs.

The next chapter discusses some of the issues of working within and across ethnic groups, in particular focusing on communication. It pays particular attention to the challenges of working with people who speak a different language, who may see the world from different reference points to the practitioner’s own. The so-called ‘insider–outsider’ debate is considered, and the chapter offers some guidance on working with interpreters.

Chapter 9 presents a number of short case studies where culture and ethnicity are the focus of practice. Here, contributors describe how they have placed culture and ethnicity at the heart of their work, and have developed projects that address key aspects of need. Each in their different ways highlights practical ways of promoting access and engagement within communities who may be less well represented in terms of service uptake, and illustrates why it is important and worthwhile working with ethnic community groups. Specific projects presented here include a Singing for the Brain group tailored to South Asian people, a Somali dementia cafe, a connecting communities project aimed at promoting awareness in minority ethnic communities in London, a Carer Information and Support Programme adapted for South Asian people, a wide-reaching project aimed at promoting awareness and good practice in the Irish community, a social group for South American older people, and a project to develop dementia-friendly Sikh Temples (Gurudwaras). Each of these projects is different, and approaches need in its own way, but all of them show that a targeted intervention can make a big difference.

Chapter 10 addresses culture and ethnicity issues within care homes. Alisoun Milne and Jan Smith point out the urgent need to develop culturally competent care and enhance good practice with minority groups across the care home sector. They present an overview of the issues faced by the growing number of care home residents who are from minority ethnic backgrounds, and also discuss workforce issues including recruitment and retention, the pros and cons of m...

Table of contents

• Cover
• Endorsements
• Of Related Interest
• Title Page
• Copyright
• Contents
• Foreword
• 1. Introduction
• Section One: Exploring the Issues
• Section Two: Engaging and Working with People with Dementia and their Families
• Section Three: Perspectives of Families Living with Dementia
• Section Four: The Way Forward
• About the Editors and Authors
• Subject Index
• Author Index