Centre for Primary Care, University of Manchester Recruitment and methodological issues of conducting dementia research in British ethnic minorities Waquas Waheed, Nadine Mirza, Muhammed Wali Waheed, Amy Blakemore, Cassandra Kenning, Yumna Masood, Fiona Matthews, Peter Bower Centre for Primary Care, University of Manchester

Why did we do this systematic review? 1 Why are we interested? Why did we do this systematic review?

14% ethnic minority population in the UK Increasing ageing population Timing of original migration More of the older population choosing to permanently reside in the UK ONS, 2016; Richards et al., 2000; Lievesley, 2010; Wohland et al. 2010 20% by 2051 1/5th of population Explain about original migration – 1950s 1970s

850,000+ 1 million 25,000 overall diagnoses of dementia in the UK with dementia by 2025 25,000 (expected to DOUBLE by 2026) dementia diagnoses in ethnic population Fernandez et al., 2010; Sachrajda, 2011; Prince et al., 2014; DoH 2009; Lakey et al., 2012

Why are ethnic minorities at risk? Ethnic minority groups show a high susceptibility for receiving a diagnosis of dementia: Higher prevalence of risk factors (vascular diseases, type 2 diabetes, hypertension, rates of obesity) Scarcity of accessible information on preventative measures Lifestyles, stigma, confusion with regular ageing Diagnostic tests not designed with ethnic minorities in mind Adamson, 2001; Lindesay 1997; Gholapa et al., 2011; Regan 2014. Mention language and culture influence

Despite this, the ethnic minority population is underrepresented in dementia research Research designs do not account for the issues Studies do not target these groups Paucity of literature Lack of expertise Elaborate on individual issues

How can we conduct dementia research in a population that doesn’t have a word for dementia? How do we recruit people to dementia research if they are stigmatised and shamed for doing so? How can we screen for participants when the population doesn’t speak the same language as you? Elaborate on individual issues

How did we do this systematic review and what did we find? 2 What did we find? How did we do this systematic review and what did we find?

Our search… Any publication detailing: Dementia research conducted in the UK Qualitative and quantitative Included any ethnic minority group Any year, any methodology Used a broad search April 2016- updated June 2017 (updated again Summer ‘18) Searched CENTRAL, EMBASE, PsycINFO, MedLine, Cochrane Library

Data across publications Papers analysed for data (n=52) Papers included in review (n=32) Data across publications 22 South Asian 12 Afro-Caribbean 2 Eastern European 1 Welsh 1 Polish 1 Turkish 1 Greek 1 Chinese 1 Japanese Years 1997-2016

Themes 1: Attitudes and Beliefs 2: Recruitment Process 3: Data Collection 4: Practical Issues 5: Researcher Characteristics 6: Paucity of literature

Areas for intervention and improvement 1: Attitudes and Beliefs about dementia 2a: Recruitment Process – Diagnostic label of dementia 2b: Recruitment Process – Issues defining and identifying ethnic minorities Community/ Patient education Health services intervention 6: Paucity of literature 3: Data collection issues Training researchers 5: Researcher characteristics 4: Practical issues

3: Data Collection Issues Cultural issues in assessments Afro-Caribbean , South Asian (6) Culture influences performance on assessments Preference or reinforcement of the culture of their home country Lack of culturally adapted assessments General communication issues Afro-Caribbean, Chinese, South Asian, (13) Interpreters can cause “stilted exchange and less rich data” No word for dementia in language

4: Practical Issues Afro-Caribbean, South Asian (4) Ethnic minorities more likely to come from low socioeconomic background – lack of time or resources (child minders, means of transport)

5: Researcher Characteristics South Asian (4) Discrepancy in cultural background – “hinders communication” Raters /interviewers struggle to interpret data – “differences in the assumptions and world views” Issues recruiting from within ethnic communities – confidentiality Age differences

How do we move forward with this systematic review? 3 What happens now? How do we move forward with this systematic review?

Solutions Culturally adapting cognitive assessments Involving developing guidelines, the target population and experts in adapting health questionnaires, familiar with the culture Overcoming barriers to recruiting ethnic minorities to health research Involving researcher training, manuals and other resources on recruitment and facilitation

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