Introduction to the EDI issue from the members of the Dementia Community EDI working group

Welcome to this special, unique issue of the Journal of Dementia Care, focusing on Equality, Diversity and Inclusion (EDI).

Why do we need a special issue?

Since 2013, when the landmark report of the All Party Parliamentary Group on Dementia, Dementia does not discriminate, was published, numerous further reports have been written, demonstrating that people from certain minority communities have a higher risk of developing dementia at a younger age than their peers, that they often present later to services, and tend to die sooner after diagnosis. For complex reasons, people from these communities often miss out on the support and care they are entitled to.

Yet despite the tireless work of committed practitioners and researchers over many years – much of it highlighted in the Journal of Dementia Care and at the UK Dementia Congress – it seems that this abundant information has failed to create traction across the country amongst commissioners, funders and service providers. Serious inequities in dementia care remain. Innovative projects are often funded briefly, and then left to fade away, rather than being replicated on a national scale, with the result that all too often, individuals from minority communities who have dementia or are caring for someone with dementia still do not receive culturally appropriate support.

We live in an unequal society, with stark and widening inequalities in health outcomes and life expectancy, which inevitably leads to differences in how people from different communities experience dementia and dementia services. One size does not fit all. Intersectionality, whereby people identify with more than one group which experiences discrimination and disadvantage – such as being black and gay – adds further complexity, but is also a positive reflection of diverse but interconnecting communities, and offers opportunities for more inclusive practice. Genuine person-centred care, to which we all aspire, has to take into account the social and cultural background of each person with dementia, as well as their individual story.

What’s in this issue? 

This special issue starts with an article setting out the principles and practice of dementia care from an EDI perspective, highlighting the importance for everyone of a rights-based, values-based approach, with inclusion at its heart. This is followed by articles exploring the social and political context in which dementia care takes place in the UK, interviews and personal accounts by people who are living with dementia or caring for someone with dementia, and impressive examples of inclusive projects and services which are making a real difference to the lives of people with dementia and their families from many different backgrounds. One of the threads which comes through most clearly is the vital importance of genuine community engagement.

It is helpful to see all these articles in relation to each other. To take just one example: perhaps the experience of Jagdish Brar-Orgill, who struggled to support her mother with dementia without culturally appropriate support, would have been different if her mother had lived in a part of the country where dementia services have been designed in an integrated way, in response to local needs, as described in the article about the Bristol Dementia Wellbeing Service.

We hope that by bringing these ideas and this information together in one place we will inspire everyone within the dementia community to do everything in their power to ensure that every person with dementia, and every carer, whatever their background and personal history, receives timely, competent, compassionate, culturally appropriate care.

The diversity of diversity

Our definition of diversity within the dementia community is wide-ranging, and we have tried to be as inclusive as possible. We invited contributions representing many different perspectives, both in terms of different communities and in terms of the role of individual contributors or the sector they operate in: people living with dementia, unpaid carers, volunteers, clinicians, researchers and practitioners in a range of settings, including small community-based organisations. (And of course, for many contributors these different identities and roles overlap – another example of intersectionality.)

Needless to say, it has not been possible to represent all communities and all dementia care settings in this one issue. We are confident that articles exploring the experience of people from other communities, and from those striving to apply the principles of EDI in other settings will appear in future issues of JDC.

Please do respond to this special issue. Let us know what you are doing in your community or your service. Take up the “JDC Asks Challenge”. Send in your ideas for further articles, or better still, offer to write an article yourself, sharing your experience of dementia care from an EDI perspective.