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Leave No-one Behind – improving pathways to dementia information

An estimated 25,000 people of Black, Asian and Minority Ethnic (BME) origins live with dementia in the UK – a number which is expected to increase sevenfold by 2051. People from many minoritised communities experience dementia in a markedly different way to their white British counterparts. The fight for a myriad of effective information pathways, quick diagnosis, and person-centred care systems that address the health as well as psychosocial support requirements of those with dementia has long been a research, practice and policy priority.  We need to build our understanding of how best to improve the lives of people living with dementia and their families and carers.  Understanding the ways BME people living with dementia and their carers seek information, and how they experience the assessment process, and live with dementia is a critical step.  In the coming decades the UK’s older demographic will increasingly become more diverse and thus the need for dementia services to improve how people access their screening and assessment services, to enhance their models of early intervention and to develop meaningful messaging and information platforms will become that more pressing.

Moreover, the pandemic has raised the spectre of health inequalities and the disproportionate impact of dementia on population groups – not least those from Black and Minority Ethnic backgrounds where the existing evidence base is patchy and nascent. In order to (i) capture the accelerated interconnections across sectors, (ii) draw on the impact of the overhaul of existing systems and process, that cross many boundaries, and (iii) move forward, rooted in the learning and innovation that is taking place in ways that address social and health care issues exacerbated by the pandemic crisis, such work is needed. Given the Welsh Government commitment to deliver a new 10-year dementia action plan in the coming two years, not to gather necessary evidence may lead to the further cementing of health and social inequalities in the field of dementia. This work needs to be done now. In Wales, the work to be done must be noted, alongside the need for work in this area to accelerate.

This report provides a (i) scoping overview of the evidence base (ii) summaries of recently completed scoping studies and engagement work undertaken by Diverse Cymru and (iii) proposed research programme to be taken forward.

Diverse Cymru is pleased to release this research briefing paper on improving pathways to dementia information, early assessment, and support for older people from minoritised and racialised backgrounds in Wales.

This document is an evidence review and highlights emerging research priorities, created by: 

Suzanne Duval, Diverse Cymru’s BME Mental Health Manager has been conducting pioneering work in BME dementia in Wales for the last three years and this Brief has been shaped by her vision, passion and stewardship. Drafted by Dr Roiyah Saltus (University of South Wales), who has worked and conducted research with Suzanne Duval in the field of mental health for nearly 20 years.  The Brief also benefits from discussion with and invaluable input by Dr Sofia Vougioukalou (Cardiff University).  Professor Mark Johnson (Bradford University) provided specialist advice and expertise in terms of reviewing the draft. Lastly, we thank all those who have helped and supported us over the last 3 years for sharing their experiences and adding their voices, talents and knowledge to the Black Asian and Minority Ethnic dementia arena in Wales. We acknowledge and owe a debt of gratitude to:

Faith Walker &  FW Consultancy
Aisha Jenkins
Humie Webbe
Jacqui Ayres
Anne Mears-Rees
Shelagh Maher
David Truswell
Mohammed Akhlak Rauf
Councillor Daniel De’Ath
Gaynor Legall
Zoe King
Samira Salter
Kay Denyer
Helen Joy
Nubian Life
Dementia Alliance for Culture & Ethnicity
The Yemeni Community Centre
Travelling Ahead – Gypsy, Roma and Traveller Advice and Advocacy Service
Nexus
Cardiff and Vale Action for Mental Health (CAVAMH)
Race Council Cymru
Public Health Wales
Social Care Wales
Alzheimer’s Society
3 Nations Dementia Working Group (3NDWG)
Mark R D Johnson, Emeritus Professor of Diversity in Health and Social Care at De Montfort University Leicester UK

You can download the report: Research Briefing Note – Leave No-one Behind