Barriers and solutions for recruiting and conducting dementia
research with British ethnic minorities: A systematic review
Waquas Waheed1, Nadine Mirza1, Muhammed Wali Waheed2, Amy Blakemore1, Cassandra Kenning1,
Yumna Masood1, Peter Bower1
1Centre for Primary Care, University of Manchester, 2Leicester Medical School, University of Leicester
ETHNIC MINORITY RESEARCH IN PRIMARY CARE
Centre for Primary Care and Health Services Research, The University of Manchester
Ethnic Minorities in the UK
• 14% of the UK population belong to an ethnic minority1- predicted to rise to 20% by 20511
• There is an increasing ageing ethnic minority population2:
Migration to the UK between the 1950s and 1970s as young adults
-Older ethnic minorities choosing to stay in the UK permanently
• Predictions say up to 29% of ethnic minorities will be over the age of 65 by 20514.
Dementia in Ethnic Minorities
• Ethnic minorities account for 25,000+ dementia diagnoses5– expected to double by 20266.
• Ethnic minorities show high susceptibility for receiving a dementia diagnosis7,8:
-Higher prevalence of risk factors eg. vascular diseases, diabetes, obesity
-High prevalence of dementia in those who don’t speak English
-Inaccessible information on dementia and preventative measures
Despite this, ethnic minorities are underrepresented in UK based dementia research…
The themes allowed us to identify 3 areas that are responsible
for intervening and improving these issues: community and
patient education, health services, and researchers.
•Our review lists existing issues in recruiting, including and
retaining ethnic minorities within UK dementia research.
• It covers research stages, highlighting barriers that emerge
not just during the research process but before .eg.
the community that prevent recruitment
•It also highlights problems that can arise when recruiting
ethnic minorities to any health research.
•Some of these problems may also apply to other
disadvantaged or low socioeconomic groups.
•The themes act as a check and guide for future dementia
researchers when designing their studies.
•Authors of the publications should be contacted to explore
the solutions they used in case they did not report this in their
•The areas responsible for intervention act as a precursor for
identifying new and improving existing solutions.
•Researchers should incorporate the solutions pertaining to
Studies do not
designs do not
issues specific to
How can we
research in a
no word for
What if the
How do you
recruit if people
1. Attitudes and beliefs about dementia in
ethnic minority communities
Community and Patient Education
5. Researcher Characteristics
-Gender discrepancy -Age related issues
-Struggle to interpret data due to cultural differences
-Participants reluctant to work with researchers from their community
-Gender matching -Cultural sensitivity training
-Data analysis by an individual from the same ethnic group
2a. Recruitment Process – Determining a
Diagnostic Label for Dementia
2b. Recruitment Process – Defining and
identifying ethnic minorities
3. Data Collection
-Mismatch of language and culture in testing -Poor quality translation
-Communication issues due to language and cultural barriers
-Cultural adaptation of materials -Hiring qualified translators
-Hiring and training interpreters according to cultural differences
4. Practical Issues
-Lack of financial resources -Low socioeconomic status -High mobility
-Difficulty in committing time
-Arrange for transport -Arrange for child minding services -Multiple visits
-Persistent contact -Conduct research at place of residence or community location
6. Paucity of literature on dementia research within ethnic minority groups
How can we improve ethnic minority representation in dementia research?
Identify issues recruiting, including and retaining ethnic minorities in UK based dementia research and solutions to these issues:
A qualitative systematic review
3. Methods and Search Results
Tel: 0161 275 7611
Twitter: @thealmostpsych #DOMEProject
A: Identified any
UK study related
to dementia that
C: The data on
listed. These were
E: Our search
found 58 papers
that met our
D: The data on
matched to the
F: Of these 33
issues faced by
G: We identified 6
assigned to these
•1. Office for National Statistics, National
Records of Scotland, Northern Ireland
Statistics and Research Agency (2016).
•2. Lievesley, N. (2010). The future ageing
of the ethnic minority population of
England and Wales.
•3. Richards, M., Brayne, C., Dening, T.,
Abas, M., Carter, J., Price, M., ... & Levy, R.
(2000). Cognitive function in UK
community-dwelling African Caribbean and
white elders: a pilot study.
•4. Wohland, P., Rees, P., Norman, P.,
Boden, P., & Jasinska, M. (2010). Ethnic
population projections for the UK and local
•5. Department of Health. (2009). Living
well with dementia: A national dementia
•6. Lakey, L., Chandaria, K., Quince, C.,
Kane, M., & Saunders, T. (2012). Dementia
2012: A national challenge.
•7. Adelman, S., Blanchard, M., Rait, G.,
Leavey, G., & Livingston, G. (2011).
Prevalence of dementia in African–
Caribbean compared with UK-born White
older people: two-stage cross-sectional
•8. Seabrooke, V., & Milne, A. (2004).
Culture and care in dementia: A study of
the Asian community in North West Kent.
•9. Forbat, L. (2003). Concepts and
understandings of dementia by
‘gatekeepers’ and minority ethnic ‘service
•10. Bhatnagar, K., & Frank, J. (1997).
Psychiatric disorders in elderly from the
Indian sub‐continent living in Bradford.
•11. Khan, F., & Tadros, G. (2014).
Complexity in cognitive assessment of
elderly British minority ethnic groups: