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Barriers and solutions for recruiting and conducting dementia research with British ethnic minorities: A systematic review



Winner of the Stirling Award 2019 Background: There is no collation of information that details recruitment and methodological issues researchers face when including ethnic minorities within dementia research. Without such a compilation solutions to negate existing issues cannot be devised and future researchers may continue to face issues with no protocol to measure their methodology against. Therefore, we conducted a systematic review of the barriers and solutions for the recruitment and methodology of conducting dementia research in British ethnic minorities. Methods: Our systematic review included publications detailing UK based dementia research that included any ethnic minorities. Information from the publications was extracted regarding the recruitment and methodological issues faced by the researchers, along with any solutions they considered. Related extracts were grouped to form overarching themes utilising thematic analysis. Results: We identified 58 papers meeting our inclusion criteria of which 33 described recruitment and methodological issues. These were collated into six themes; Attitudes and beliefs about dementia, recruitment process, data collection issues, practical issues, researcher characteristics and paucity of literature. These themes identified three areas that require intervention for improvement in dementia research: community and patient education, health services and researcher training. Extracts pertaining to solutions are being attributed to these three areas and individual themes on issues. Conclusions: Acknowledgement of the areas that require improvement along with our collation of reported recruitment and methodological issues acts as a precursor for improving existing and developing new solutions. This review can be utilised by future dementia researchers to identify gaps in their own methodologies.
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
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.
This Research
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.
Beliefs in
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.
Future Directions
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
Lack of
expertise and
literature on
working with
Studies do not
target ethnic
designs do not
account for
issues specific to
from research
cannot be
applied to
Lack of
looks like…
With problems
How can we
research in a
population with
no word for
What if the
doesn’t speak
the same
How do you
recruit if people
might be
stigmatised for
1. Attitudes and beliefs about dementia in
ethnic minority communities
Community and Patient Education
Health Services
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
1. Background
2. Aims
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
4. Findings
5. Discussion
Tel: 0161 275 7611
Twitter: @thealmostpsych #DOMEProject
A: Identified any
UK study related
to dementia that
included ethnic
B: Extracted
data on
recruitment and
issues and
C: The data on
issues was
combined and
listed. These were
grouped into
E: Our search
found 58 papers
that met our
criteria after
D: The data on
solutions were
matched to the
themes they
F: Of these 33
recruitment and
issues faced by
G: We identified 6
themes. Solutions
are being
assigned to these
6. References
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
areas, 2001-2051.
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:
Cultural perspective.
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