1. 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

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

3. 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 /5th of population
Explain about original migration – 1950s 1970s

4. 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

5. 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

6. 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

7. 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

8. 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?

9. 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 updated June 2017 (updated again Summer ‘18)
Searched CENTRAL, EMBASE, PsycINFO, MedLine, Cochrane Library

10. 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

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

12. 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

13. 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

14. 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)

15. 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

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

17. 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

18. Thank you for listening!
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