Prevalence of dementia in
population groups by protected
characteristics
A systematic review of the literature
Prevalence of dementia in population groups by protected characteristics
About Public Health England
Public Health England exists to protect and improve the nation's health and wellbeing,
and reduce health inequalities. It does this through world-class science, knowledge and
intelligence, advocacy, partnerships and the delivery of specialist public health services.
PHE is an operationally autonomous executive agency of the Department of Health.
Public Health England
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133-155 Waterloo Road
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Tel: 020 7654 8000
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Prepared by: Matrix Policy Solutions Ltd.
© Crown copyright 2015
You may re-use this information (excluding logos) free of charge in any format or
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concerned. Any enquiries regarding this publication should be sent to
[email protected]
Published October 2015
PHE publications gateway number: 2015378
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Prevalence of dementia in population groups by protected characteristics
Contents
A systematic review of the literature
1
About Public Health England
2
Contents
3
Executive summary
4
Introduction
Methodology
Results
Discussion
Acknowledgments
4
4
4
4
5
Introduction
6
Awareness
Diagnosis
Research
Aims and objectives
Primary question
Secondary questions
Methodology
Literature search methodology
Literature search
Review and synthesis approach
Search results
Limitations of the evidence
Reference snowballing
6
6
6
8
8
8
9
9
9
10
17
17
18
Findings
19
Risk factors
Grey literature
Implications
22
23
25
Recommendations
26
References
27
Appendix I. Randomly selected papers to develop inter-reviewer consistency
37
Appendix II. Grey literature
39
Appendix III. Papers grouped by country
42
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Prevalence of dementia in population groups by protected characteristics
Executive summary
Introduction
Dementia is a significant and growing problem. Over the last 20 years deaths from
dementia have nearly doubled. This review examines how common dementia is and
how much it varies between groups with the following characteristics: socio-economic
position, race or ethnic group, religion, gender, sexual orientation and disability.
Methodology
This review builds on previous work. Using standard methods for reviewing literature, it
considered scientific papers and those published by voluntary sector organisations.
Systematic efforts were made to find all relevant papers on this topic. Data was
extracted from all relevant articles and it was synthesised qualitatively. Due to the
evidence search design, the approach primarily focused on developing insights into the
differential prevalence of dementia.
Results
Dementia was more common in people from African-American, black-Caribbean or
Hispanic background. There was no information published on people from south-east
Asian backgrounds.
Dementia is more common in women. There was no information to help understand if
religion or sexual orientation changed the prevalence of dementia. Learning disability
and lower socio-economic position both increased the prevalence.
Risk factors known to increase dementia (diabetes, stroke and depression) also
increase dementia in groups with increased prevalence, and education remains
protective against dementia.
Discussion
In some groups people do not always appear to be diagnosed with dementia when they
have it. Research should focus on the causes of this and how to increase the diagnosis
of dementia.
Specific research is needed to understand how common dementia is in people from a
south-east Asian background in the UK. Research is needed to investigate the exact
impact of the known risk factors (depression, diabetes and stroke) across the protected
characteristics, as this will help organise and target services.
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Prevalence of dementia in population groups by protected characteristics
Acknowledgments
Particular thanks should go to the following individuals who, on behalf of their
organisations, kindly sent us document, papers, reports and evidence, without which
this review would not have been possible.
Bob Green, chief executive, Stonewall Housing
Charlotte Prew, senior library assistant, knowledge and library services, Public Health
England
Chole Wright, policy and public affairs manager, Carers UK
Des Kelly OBE, executive director, National Care Forum
Fiona Goodall, themed inspection manager, Care Quality Commission
Louise Hart, senior audiology specialist, Action on Hearing Loss
Louise Marks, dementia policy and development officer, The Carers Trust
Martina Kane, senior policy officer, Alzheimer’s Society
Mary O'Brien, programme lead, service development, Alzheimer’s Society
Philly Hare, Joseph Rowntree Foundation
Rachael Litherland, Innovations in Dementia
Rebecca Stanley, public health analyst, Age UK
Sharon Blackburn, policy and communications director, National Care Forum
Susan Rose, registry and library services officer, Public Health England
A wide range of organisations submitted documents to Public Health England in 2014.
The information they submitted was shared with the review team and significantly
contributed to the creation of this report. Those stakeholders included:
Alzheimer’s Society
Age UK
Mental Health Providers Forum
National Care Forum, Voluntary Organisations Disability Group
Race Equality Foundation
Women’s Health Equality Consortium
Young Dementia UK
The review team would also like to give special thanks to the following people for their
extensive comments on early drafts, which significantly improved this report.
Nuzhat Ali, national health and wellbeing lead, Public Health England
Bola Akinwale, health equity programme lead, Public Health England
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Prevalence of dementia in population groups by protected characteristics
Introduction
Dementia is a significant and growing problem. Over the last 20 years the crude death
rates (Murray, 2014) and age-standardised death rates from dementia have nearly
doubled (Lozano et al, 2012). Dementia has an impact far beyond the person with the
condition (Audulv et al, 2014). It represents a significant economic burden on patients,
families and health services (Schaller et al, 2015), and can significantly distress
caregivers (Vu et al, 2014). People with dementia often have co-existing neurological
conditions, commonly stroke and Parkinson's disease (Vu et al, 2014).
The course of dementia is often a slow but unpredictable progression (Audulv et al,
2014). Recognising the impact of dementia underpins the current approach to
dementia. The Department of Health (DH) currently has a number of priorities for
securing improvements in dementia diagnosis, care and research:
Awareness
Improve public awareness and understanding of the factors that increase the risk of
developing dementia, and of how people can reduce their risk by living more
healthily.
Diagnosis
In every part of the country people with dementia have equal access to diagnosis as
for other conditions, with an expectation that the national average for an initial
assessment should be six weeks following a referral from a GP (where clinically
appropriate), and that no one should wait several months for an initial assessment of
dementia.
Research
Dementia research should be a career opportunity of choice, and the UK the best
place for dementia research via a partnership between patients, researchers, funders
and society.
Funding for dementia research should double by 2025.
Increase investment in dementia research from the pharmaceutical, biotech devices
and diagnostics sectors, including from small and medium enterprises (SMEs),
supported by new partnerships between universities, research charities, the NHS and
the private sector. This would lead to world-class facilities and infrastructure, drive
capacity building, and speed up discovery and implementation.
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Prevalence of dementia in population groups by protected characteristics
Cures or disease-modifying therapies should exist by 2025, their development
accelerated by an international framework for dementia research, enabling closer
collaboration and cooperation between researchers on the use of resources such as
cohorts and databases around the world.
Prevalence estimates for dementia vary considerably. The reported prevalence varies
by ascertainment method and the diagnostic criteria used (Catindig et al, 2012).
Dementia prevalence increases with age, and age is an independent predictor of
dementia (Adelman et al, 2011). In younger age groups (above the age of 60) the
prevalence doubles every five years (Adelman et al, 2011, Jorm et al, 1987). The
proportional increase slows in the very old, no longer doubling every five years. The
prevalence at age 85 is 30% and 52% at age 95 (Borjesson-Hanson et al, 2011).
As they age relatively few people need institutional care (Hirdes et al, 2011). However,
the likelihood of needing expensive institutional care increases significantly for people
with dementia in comparison to people without dementia (Williams et al, 2009, AgueroTorres et al, 2001).
This review builds on previous work by DH, in 2010-11, as part of the development of
the Dementia Equalities Action Plan (DH, 2011). It examines evidence on how the
prevalence of dementia varies with the following characteristics: socio-economic
position, race or ethnic group, religion or belief, gender, sexual orientation and disability.
These characteristics were considered to be potentially associated with different rates
of dementia and/or different outcomes, especially in terms of speed of progression of
the condition.
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Prevalence of dementia in population groups by protected characteristics
Aims and objectives
Public Health England (PHE) commissioned this review as part of informing an
equitable risk reduction strategy. This review is for commissioners and providers of
dementia services, PHE knowledge and intelligence team, researcher funding bodies
and researchers and policy makers. Specifically this review aims to gain insight into the
following questions.
Primary question
Are certain population groups, defined by specific characteristics, at increased risk of
dementia?
Secondary questions
What are the causes of differences in prevalence of dementia in individuals with
different characteristics including socio-economic groups, race and ethnicity, religion,
culture or belief, gender, sexual orientation and disability? (NB. Not pregnancy.)
For people living with dementia, do dementia outcomes vary according to the presence
of these characteristics?
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Prevalence of dementia in population groups by protected characteristics
Methodology
Literature search methodology
The search strategy was prepared by the PHE knowledge and library services team
(KLS) and designed to build on previous work undertaken by DH as part of the
development of the Dementia Equalities Action Plan (DH, 2011).
Inclusion criteria





studies published between 2011-15 only
subjects must have:
o one or more of the following protected characteristics (within the
Equality Act (2010)
 ethnicity
 religion or belief
 gender
 sexual orientation
 disability
o or documented evidence of their socio-economic position,
subjects must have vascular dementia or Alzheimer’s disease, confirmed by
medical diagnosis
studies where prevalence of dementia is reported for each group
countries to include:
o UK
o USA
o Canada
o Australia
o New Zealand
o mainland European countries
o South Africa
o Japan
Exclusion criteria



dementia with Lewy bodies, Creutzfeldt-Jakob disease, fronto-temporal dementia
and mild cognitive impairment.
non-English papers
pregnant individuals
Literature search
The PHE team searched Medline, Embase, CINAHL, PsycINFO, and Social Policy and
Practice. Results were limited by date range, from 2011 to end of January 2015, and
9
Prevalence of dementia in population groups by protected characteristics
English language papers only. Records were stored in an EndNote library and
duplicates removed. Papers were then excluded by sifting through the title and abstract
of each record in the EndNote library. From a total of 982 records, 653 were excluded,
leaving 331 records for inclusion.
Total records
English
Foreign
language
Medline
1175
1134
41
Embase
2057
2024
33
657
CINAHL
129
N/A
N/A
N/A
PsycInfo
498
477
21
N/A
Social Policy
and Practice
71
N/A
N/A
N/A
3930
3635
95
N/A
Database
TOTAL
RESULTS
Excluded
records
653
Foreign
language
95
Conference
abstracts
657
Duplicates
2630
Included records
331
Conference
abstracts
Results of this search were handed over to the review team for abstract screening and
selection of papers for full text review.
Review and synthesis approach
The methodology used to undertake this review balances the need for speed, precision,
academic rigour and policy usefulness. Wherever possible, this methodology followed
internationally recognised standards for the conduct and reporting of reviews of this
nature.
Deriving full benefit of the data available in this field was thought likely to require mixed
quantitative and qualitative methods to evidence synthesis. Our, a priori, assumption
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Prevalence of dementia in population groups by protected characteristics
was that a thematic synthesis approach would be taken to the evidence (Thomas and
Harden 2008) and some areas the data would be of sufficient quality and homogeneity
to aggregate statistically.
This review was done using the standards for developing reviews addressing questions
of prevalence put forward by the Joanna Briggs Institute (Joanna Briggs Institute 2014,
Munn et al 2014).
Due to the nature of the evidence search design, the approach primarily focused on
developing insights into the differential prevalence of dementia. Wherever possible, the
review aimed to also extract data and code thematic findings that would indicate
differences in outcomes, the potential for early intervention or support, or possible
drivers of differential outcomes.
Abstract screening
Two reviewers independently screened the 331 included records, and 89 papers were
selected for full review. 23 papers contained information on the prevalence of dementia
in people with the inclusion characteristics. An additional 22 papers were identified from
the references of these 23 papers [See Reference snowballing] as potentially having
information on populations with the inclusion characteristics or factors that increased
their risk of developing dementia. 11 papers contained only information from countries
other than those in the inclusion criteria. Eight papers contained only information about
populations with mild cognitive impairment. 47 papers were reviewed and considered
then excluded because they did not contain any relevant information on populations
with the characteristics of interest.
Grey literature
This review builds on previous work between PHE and a wide range of stakeholder
organisations. To ensure that this review took account of this work, the following
organisations were contacted to request reports, unpublished papers, reviews or
evidence relevant to this review.
Those stakeholders (in alphabetical order) included:
Age UK
Age UK Camden
Alzheimer’s Society
Care England
Care Quality Commission
Carers Trust
Carers UK
Dementia UK
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Prevalence of dementia in population groups by protected characteristics
Disability Partnership
Disability Rights UK
Innovations in Dementia
Life story network
Men's health forum
Mental Health Foundation
National Care Forum
National LGB&T Partnership
Race Equality Foundation
Sense Deaf Blind Charity
Stonewall Housing
Sue Ryder
United Kingdom Homecare Association
Voluntary Organisations Disability Group
Volunteering Matter
Women’s health and Equality Consortium
Young Dementia UK
26 papers were received and reviewed as part of this evidence review.
Proposed review methodology
Approach to sorting the evidence
It was anticipated that the evidence portfolio would be divided into groups by protected
characteristic, so that the volume of evidence pertinent to each characteristic would be
apparent.
As part of the process for developing inter-reviewer consistency, for each characteristic
for which there where more than five papers, one paper would be selected at random
for general review (independent review by each team member then joint discussion of
the individual reviews) and one additional paper for each team member to individually
review.
The team members would then compare the appraisal and data extraction conducted
for inter-rater reliability (Kappa coefficient), the coding for common identification of
themes and for likely approaches to synthesis. At this time the team would also identify
any issues that the evidence presented for appraisal, extraction, coding or synthesis
and consensus developed on the approach to be taken to overcome any issues.
Having then agreed the approaches, this would then be tested on the characteristics for
which there were less than five papers, with all papers being reviewed by all team
members. At this stage the exact approach to synthesis would be agreed, dependent on
the nature of the available data from the identified evidence.
12
Prevalence of dementia in population groups by protected characteristics
The remaining data would then be divided randomly in a 1:2:3 ratio between the team
members for individual appraisal, data extraction and coding. This would allow for the
optimum balance of timeliness, quality assurance and use of the least costly resources.
Ideally every paper would be independently appraised, extracted and coded by two
team members, however the proposed method of aligning approaches and testing for
inter-rater reliability was thought to be a suitable compromise. As the team members
regularly work together conducting evidence reviews, this trade off was considered
appropriate given the anticipated volume of evidence and the time and resource
constraints.
Full evidence appraisal, data extraction and coding
The Joanna Briggs Institute’s Critical Appraisal Checklist for Studies Reporting
Prevalence Data was used to inform the methodology for appraising the quality of the
studies.
The lead quantitative reviewer, following the initial round of evidence overview and
methodological harmonization, developed the quantitative data extract template.
The lead qualitative reviewer developed the framework for qualitative data extraction
extract and coding structure development. This was part of the initial round of evidence
overview and methodological harmonisation.
Evidence synthesis
The choice of a narrow five year window for the collection of the evidence meant that
the review team focused on robust identification of potential differences as the primary
concern. An accurate point estimate of any identified difference was not considered an
over-riding concern. This then governed our approach to the evidence, which was
planned to take two distinct approaches, firstly thematic synthesis.
The thematic synthesis followed three stages, coding of text, development of descriptive
themes, and generation of analytical themes (Thomas and Harden 2008). Descriptive
themes remained close to the primary studies, however analytical themes represented
a process of interpretation that allowed the review to go beyond the primary studies and
generate new interpretive constructs, explanations or hypotheses.
This process of interpretation was particularly used to explore factors that appeared to
contribute to any differential risk in the study populations.
Secondly, in areas where data was of sufficient quality and homogeneity to aggregate
statistically, we planned to perform formal statistical meta-analysis. We anticipated that
13
Prevalence of dementia in population groups by protected characteristics
even where this data existed that there would still be a degree of heterogeneity in the
underlying data and that there would be a large range of sizes of studies. Given this, we
anticipated using a random-effects model for the meta-analysis.
Changes to the proposed methodology
Proposed inclusion criteria
The inclusion criteria was originally designed to include only those studies published
2011-15 in the UK, USA, Canada, Australia, New Zealand, Europe, South Africa and
Japan.
Actual inclusion criteria
Where it became apparent that additional directly relevant information was referenced
within the retrieved papers, particularly reference to primary or secondary research, the
team took a pragmatic view to obtain and include these papers within the review.
The intention had been to exclude any papers from the final set of papers for review
which focused on study subjects from countries outside those in the inclusion criteria.
However, due to the small volume of data, the team separately reviewed these papers
as a way of triangulating the emerging themes from the countries in the inclusion
criteria.
Proposed exclusion criteria
Mild cognitive impairment (MCI) was considered for the exclusion criteria. This is
because MCI is more common than dementia, and there is not a direct conversion from
it to dementia (only 10-20% of people with MCI go on to develop dementia).
Actual use of exclusion criteria
The intention had been to exclude any papers from the final set of papers for review
that focused on study subjects with MCI and not dementia. However, due to the small
volume of data, the team separately reviewed these as a way of triangulating the
emerging themes relating to dementia.
Proposed approach to develop inter-reviewer consistency
The evidence portfolio was to be divided into groups by protected characteristic, so that
the volume of evidence pertinent to each characteristic is apparent.
For each characteristic for which there are more than five papers, one paper was to be
selected at random for general review (independent review by each team member then
joint discussion of the individual reviews) and one additional paper for each team
member to individually review.
14
Prevalence of dementia in population groups by protected characteristics
Having then agreed the approaches, this would then be tested on the characteristics for
which there are less than five papers with all papers being reviewed by all team
members. At this stage the exact approach to synthesis would be agreed, dependent on
the nature of the available data from the identified evidence.
Actual approach used to develop inter-reviewer consistency
Following the screening of abstracts to select papers for full appraisal and extraction,
only 89 papers remained across all characteristics. The team therefore selected ten
papers randomly from all potential papers (using a pseudo-random number generator,
Excel 2011 for Mac [See appendix I for the list of papers]).
These papers were each reviewed, critiqued and themes were extracted from them by
each of the team members independently. These were then shared between the team
discussion regarding any differences was resolved by consensus. Agreement was then
formed regarding the final approach to the remaining papers.
Proposed approach to complete data extraction
The remaining data was then to be divided randomly in a 1:2:3 ratio between the team
members for individual appraisal, data extraction and coding. This would allow for the
optimum balance of timeliness, quality assurance and use of the least costly resources.
The ideal was that every paper would be independently appraised, extracted and coded
by two team members, was thought not to be possible as the review had a very tight
timescale for completion and given the anticipated volume of papers to be considered.
Actual approach used for complete data extraction
The small volume of papers that remained for final consideration meant that thematic
saturation was unlikely to be obtained in all areas and across all protected
characteristics. The following changes were therefore made.
Firstly, each paper was allocated a primary reviewer and a second reviewer who
reviewed all papers independently. This is in keeping with the ideal that every paper
would be independently appraised, extracted and coded by two team members. This
ensured that the maximum data was extracted from each paper and that the highest
levels of reliability could be ensured.
Secondly, the abstract screening to select the final papers contained papers that related
to protected characteristics but where the study subjects had mild cognitive impairment
and not dementia. The intention had been to review these to see if they had also
covered dementia and exclude them from the review if they did not. However, due to
the overall small volume of data the team separately reviewed these, as a way of
15
Prevalence of dementia in population groups by protected characteristics
triangulating the emerging themes regarding dementia this synthesis is included in a
separate section in the results.
Proposed approach to statistical meta-analysis
In areas where data was of sufficient quality and homogeneity to aggregate statistically
we still anticipated a degree of heterogeneity in the underlying data, and that there
would be a large range of sizes of studies. As such we anticipated using a randomeffects model for the meta-analysis.
Actual approach to statistical meta-analysis
Many of the studies were of themselves of reasonable quality for the question that they
sought to answer, but of much lower quality when considered for the purposes of
answering the question posed by this review. There was considerable heterogeneity in
the studies; they had different source populations, different age ranges, different
methods of case ascertainment and different diagnostic approaches to dementia. Few
of the studies presented data suitable for statistical meta-analysis, and because of this
the team focused on qualitative review and evidence synthesis.
16
Prevalence of dementia in population groups by protected characteristics
Search results
Limitations of the evidence
The search strategy used for this literature review did not set out to systematically
identify information on risk factors for dementia. There are existing studies that have
identified known risk factors for dementia and the Blackfriars Consensus represents a
current position regarding those risk factors (Lincoln, 2014). However, there may be
additional studies that have examined the prevalence of known risk factors for dementia
in groups with the characteristics of interest to this review question. Therefore, there
would be value in a full formal review of the differential prevalence of known risk factors
for dementia in groups with the characteristics of interest [See Research
recommendations].
Population-based dementia prevalence studies of identified groups with protected
characteristics were limited. The studies were home care service based (Vu et al,
2014), hospital discharge based (Husaini et al, 2013) and community surveys (Adelman
et al, 2011, Borjesson-Hanson et al, 2011). Many studies were retrospective reviews
based on diagnoses made in the course of routine care.
The diagnosis of dementia is often based on subjective assessment and there are some
studies indicating factors that lead to over diagnosis, for example subjective memory
complaints (Pond et al, 2013), and others which indicate issues of under diagnosis
(Connolly et al, 2011, Pond et al, 2013). It is not always clear how these issues
differentially affect groups with protected characteristics. In the literature reviewed, there
was not any evidence that this differentially effected groups with protected
characteristics. However, the Race Foundation report presented some data that
suggest a differential impact (Truswell, 2013).
Cautious interpretation is required of all the evidence that was found for this review, as
many of the findings will be based only association and not have a causal relationship.
Age boundaries of the cohorts were often different 50+ (Vu et al, 2014, Catindig et al,
2012), 55+ (Shooshtari et al, 2011), 60+ (Wu et al, 2014, Simning et al, 2014), 65+
(Husaini et al, 2013, Thyrian and Hoffmann, 2012), 75+ (Piguet et al, 2003), 95+
(Borjesson-Hanson et al, 2011). This is extremely important because age is the single
strongest factor associated with increasing risk of dementia, so this has the potential to
confound the comparison and synthesis of any studies and would require careful
methodological evaluation, and statistical control.
The methods used to identify the source population varied considerably across the
studies reviewed. Many of the studies that reported prevalence of populations with
different protected characteristics were not studying it as their primary question. This
17
Prevalence of dementia in population groups by protected characteristics
means that the reported prevalence was biased. For example, the large Tennesseebased hospital discharge study of patient over 65 (Husaini et al, 2013) had a smaller
proportion of African-Americans in the hospitalised population than in the general
Tennessee population (11% vs 14%). There was rarely sufficient data within the studies
to make a valid judgement as to the way in which bias was likely to be affecting the
results.
Reference snowballing
There were a number of additional relevant studies that were sourced through the
references of the review studies, which were not identified as primary studies – often
because they were outside the time inclusion criteria.
Source
Additional reference(s)
(Vu et al, 2014)
(Aguero-Torres et al, 2001)
(Williams et al, 2009)
(Hirdes et al, 2011)
(Chin et al, 2011)
(Gurland et al, 1999)
(Potter et al, 2009)
(Momtaz et al, 2013)
(Mathews M and Mathews J, 2004)
(Butters et al, 2008)
(Korczyn and Halperin, 2009)
(Khaw et al, 2009)
(Saczynski et al, 2010)
(Husaini et al, 2013)
(Ott et al, 1999)
(Venketasubramanian et al, 2011)
(Graves et al, 1996)
(White et al, 1996)
(Tang et al, 2001)
(Hendrie et al, 2001)
(Snowdon and Lane, 2001)
(Piguet et al, 2003)
(Kalaria et al, 2008)
(Wada-Isoe et al, 2009)
(Meguro et al, 2011)
(Adelman et al, 2011)
(Jorm et al, 1987)
(Borjesson-Hanson et al, 2011)
(Saunders et al, 1993)
18
Prevalence of dementia in population groups by protected characteristics
Findings
Ethnicity
The largest body of evidence in this review concerns the prevalence of dementia in
people from different ethnic groups. Ethnicity is a complex and contested concept. It
has a social focus, relating to a real or putative shared identity based on one or more
symbolic elements such as culture, language, religion, kinship, shared territory or
physical appearance (Bulmer 1996). The labels commonly used to describe ethnic
groups in England are generally those which are practical for statistical and policy
purposes. However, it should be recognised, that ethnic identity can change over time,
or depending on the social context. Ethnic group measurement also varies considerably
by nation state. The labels used here reflect those used in included studies reviewed.
Only studies focused on dementia in people from African-American (black-Caribbean)
or Hispanic ethnic groups were found in the literature focused on the countries in the
inclusion criteria.
In a large Tennessee-based hospital discharge study of patient over 65 (Husaini et al,
2013) 3.6% had a diagnosis of dementia. People with a diagnosis of dementia were
more likely to be African-American than Caucasian (4.2% vs 3.5%) and female than
male (3.9% vs 3.2%). However, African-American people were less represented in the
hospitalised population than in the general Tennessee population (11% vs 14%).
In this study, the increase in dementia appears to be particularly mediated through
increased prevalence of stroke and diabetes. The prevalence of Alzheimer's disease in
populations in Manhattan showed a two-fold increase in African-American and Hispanic
populations compared with Caucasians (Mattiussi et al, 2012) and for dementia and
cognitive impairment (Noble et al, 2012). These differential rates are consistent with
other US based larger studies (Potter et al, 2009, Gurland et al, 1999). These
differences were greatly reduced, but not entirely eliminated, when controlling for known
risk factors (education, literacy, stroke, hypertension, heart disease and diabetes).
A study examining the prevalence of dementia in a small area of London, UK (Adelman
et al, 2011) revealed an increased prevalence in people of black-Caribbean ethnicity.
This increase remained even after controlling for socio-economic position.
There were many ethnicities not represented with the available studies. For example,
there were no studies examining the prevalence of south-east Asians migrants or those
of south-east Asian ethnicity within any of the countries of interest. The studies from
countries outside of the scope of this review did not contain data examining the
19
Prevalence of dementia in population groups by protected characteristics
prevalence of dementia in the south-east Asian population compared with the white
population.
Complicating evidence regarding ethnicity
There is growing consensus that differences in inter-country dementia prevalence rates
are not solely products of different ascertainment rates (Venketasubramanian et al,
2011).
Studies reporting dementia prevalence rates of migrant Japanese people (Meguro et al,
2011, Yamada et al, 2002, Graves et al, 1996, White et al, 1996) show rates closer to
their adoptive countries (higher than their native country).
This is also true for African-Americans where the elderly in their native countries (eg,
Nigeria) show much lower rates of dementia (Hendrie et al, 2001). However, it is not
clear to what degree this represents selection bias – it might be that only people without
dementia in Nigeria live to be elderly.
Studies on internal migrants into and out of the 'stroke-belt' counties in the US (Glymour
et al, 2011) suggest that there is some evidence to support the concept of childhood
exposures establishing cognitive reserve and that the impact is different between
different ethnicities with the greatest effect on African-Americans [See Education in risk
factors section].
Diagnostic and screening tools need to be culturally appropriate (Adelman et al, 2011).
When the diagnostic and screening tools are not culturally appropriate, over-diagnosis
or misclassification (Kennedy, 2012) are potentially significant issues. This is a separate
and distinct issue from the under diagnosis that is caused from failure to consider the
possibility of dementia and therefore put people forward for potential diagnosis. Black
and minority ethnic people with dementia may be at particular risk of misdiagnosis,
particularly of being labelled as ‘mentally ill’ and treated with (inappropriate) medication
(Blood and Bamford, 2010).
Religion, belief and culture
Different ethnic groups, especially Hispanic and African-American groups, received
delayed and inadequate health care services for dementia (Chin et al, 2011). Efforts to
narrow this health disparity will require understanding of how the cultural beliefs of
these communities influence their understanding of dementia and their willingness to
seek support from health services for these conditions. Across a wide range of
countries and cultures gender, education and assets do not explain the variations in
health service utilisation. Dementia is usually inversely associated with health service
use (Albanese et al, 2011). Some of the culturally specific conceptualisations of
dementia as a normal part of ageing or of having a spiritual, psychological or social
20
Prevalence of dementia in population groups by protected characteristics
cause have prevented many groups from seeking support (Mukadam et al, 2011,
Mukadam et al, 2013).
Specific work in Australia (Garvey et al, 2011) suggests that some of the causes are
due to culturally mediated misconceptions and that culturally appropriate campaigns
and educational interventions may be part of the approach needed. This is an area that
has not been fully addressed in any of the literature available for this review.
Gender
Gender has long been widely reported as associated with the prevalence of dementia.
The differential prevalence reported in the studies included in this review is in keeping
with the much larger and longer standing body of evidence.
In a large survey of Canadian home care clients, Vu et al (2014) reported that a greater
proportion of people with dementia were women (63.7%). In people with dementia
receiving home care services, the women were much less likely to be married (26.9%,
men 65.5%) and much more likely to be widowed (64.1%, men 24.1%). Similar figures
come from equivalent studies in Australia (Karmel et al, 2012) - 61.7% of people with
dementia in a residential care survey were women.
The interpretation of this is limited because it is unclear what the differential drivers of
people needing home care are. As such, it is also unclear how different they are from
the general population. The study reported that of the nearly 500,000 people aged 50115 years expected to receive home care services for more than 60 days with a recent
home based assessment, more than 21% had a diagnosis of dementia. How this maps
to the general population is not clear in this study.
Borjesson-Hanson et al (2011) reported that a much greater proportion of the over-95year-olds in Gothenburg, Sweden with dementia were women (85%) and a greater
proportion of the women had dementia (56% vs 37% of men). Bernardi et al (2012)
report a greater proportion of women having dementia even at younger ages.
Socio-economic position
Socio-economic position has long been seen as an independent predictor of dementia
(Adelman et al, 2011). People with a low socio-economic position have increased
prevalence of Alzheimer's disease. Such that it is routine practice to statistically control
for socio-economic position when reporting rates of dementia. The mechanism by which
this leads to dementia is not clear, as it appears to be, in part, independent of
education. Rurality is an additional, rarely reported, factor that would interact with socioeconomic position. Rural living, especially in early life, is associated with increased risk
of dementia (Russ et al, 2012).
21
Prevalence of dementia in population groups by protected characteristics
Sexual orientation
Although there were no studies published in the time period for this review that address
the differential prevalence of groups classified by their sexual orientation or gender
reassignment, an important issue was raised in the grey literature. This issue raised
relates to people being unwilling to declare their sexuality on admission to residential
care (Peel and McDaid, 2015). This would prevent diagnoses of dementia from being
linked with sexual orientation data and therefore impede the ability of health services to
identify issues that relate to dementia and sexual orientation.
Disability
Shooshtari et al (2011) focused their case-control study on adults with developmental
disabilities. This study suggested that those developmental disabilities give rise to a
more than four-fold increase in dementia.
Associations between Alzheimer's disease and syndrome specific neurological
phenotypes are well recognised. All individuals with Down’s syndrome have the
characteristic neuropathology of Alzheimer's disease by the age of 40, and although not
all will develop dementia, it is extremely common (Lott, 2012, Zigman, 2013).
Risk factors
The papers considered in this review identified four risk factors that recurred in the
evidence regarding people with protected characteristics. Those four risk factors were
diabetes, stroke, education and depression.
Diabetes
Diabetes doubles an individual’s risk of dementia (Ott et al, 1999) (odds ratio 1.17
(Husaini et al, 2013)). In the hospital discharge study in Tennessee diabetes was more
common among African-Americans with a diagnosis of dementia (50.6% vs 33.4%).
Type 2 diabetes has a Hazard Ratio of 1.6 for dementia and cognitive impairment.
Estimates of the impact of reducing ethnic disparities in diabetic prevalence suggest
that this could reduce dementia by around 17% in ethnic populations (Noble et al,
2012).
Stroke
Stroke appears to be a strong risk factor for dementia (Odds Ratio 8.5 (Husaini et al,
2013)) especially where mediated through hypertension (Odds Ratio 1.9 (Husaini et al,
2013)).
22
Prevalence of dementia in population groups by protected characteristics
Education
Levels of education are strongly inversely associated with dementia (Gurland et al,
1999, Adelman et al, 2011). Increased early life education, is associated with reduced
risk of dementia (Meng and D’Arcy, 2012). However, after controlling for age and
education differences in rates between ethnic groups are no longer consistent.
Depression
A diagnosis of depression was less common in very elderly people with dementia
(Borjesson-Hanson et al, 2011). Although this could be due to a number of reasons; the
primary reason appears to be that psychiatric diagnoses are heavily reliant on selfreporting, which become increasing unreliable with increasing severity of dementia.
When patients with dementia are excluded from samples the apparent decline in
depression in the very elderly disappears (Saunders et al, 1993).
There are studies (Butters et al, 2008, Korczyn and Halperin, 2009, Derouesne and
Lacomblez, 2004, Saczynski et al, 2010, C Khaw et al, 2009, Mathews M and Mathews
J, 2004) that report an association between depression and the later development of
dementia.
These effects are specifically seen in some groups defined by protected characteristics.
Adults with developmental disabilities are seen to have significantly increased rates of
depression and in addition to their increased rates of dementia.
Grey literature
Information on the prevalence or risk of dementia was limited within the ‘grey literature’,
except of that from the report ‘Black, Asian and Minority Ethnic Communities and
Dementia – where are we now?’ (Truswell, 2013). The following excerpt summarises
this report.
“In the UK there has been very little work done on the impact of dementia in black and
minority ethnic communities. Little is known about the prevalence of dementia in the UK
black and minority populations despite some of these communities being at higher
levels of risk than the indigenous white population.
“There are increasing indications that the prevalence of dementia in Black AfricanCaribbean and South Asian UK populations is greater than the white UK population
(Turner et al, 2012 from Truswell, 2013) and that the age of onset is lower for Black
African-Caribbean groups than the white UK population.
“Policy guidance on understanding the issues for black and minority ethnic communities
has not yet found its way into practice when implementing the UK National Dementia
23
Prevalence of dementia in population groups by protected characteristics
Strategy. Information from the 2011 Census indicates that there are substantial
increases in the number of people from black and minority communities likely to be
living with dementia, but the understanding of dementia in such communities is limited
and the illness highly stigmatised.
“The 2011 Census shows that 58% of the black ethnic groups (Black African-Caribbean,
Black African and Black Other) live in London and also that the Black African-Caribbean
population is demographically the 'oldest' of the black ethnic groups (Lievesley, 2013
from Truswell, 2013). From the 2011 Census data this would mean over 2,700 of those
who identified as Black African-Caribbean in the capital over 65 are likely to be living
with dementia. It is probable that this figure is considerably underestimated as it
assumes that the Black African-Caribbean population has the same prevalence of
dementia as the indigenous white population, when there are studies (prior to the
timeframe of this review) that suggest that the prevalence rate is higher (Livingston et
al, 2001; Adelman et el, 2009a; Banerjee & Lawrence, 2010 from Truswell, 2013).”
Results from evidence outside the stated inclusion criteria
Mild cognitive impairment
This review does not formally consider evidence regarding mild cognitive impairment.
However, the evidence that coincidentally emerged in the course of this review
(O'Bryant et al, 2013, Juarez-Cedillo et al, 2013, Su et al, 2014, Langa and Levine,
2014, Simning et al, 2014, Lee et al, 2012, Ward et al, 2012, Kennedy, 2012) was
reviewed as part of the process of triangulating the themes that emerged from the
review.
The evidence suggests that many of the themes here are replicated in evidence
regarding mild cognitive impairment, with similar ethnic differences and protection of
education and mediation by cerebrovascular risk factors such as diabetes and
hypertension.
24
Prevalence of dementia in population groups by protected characteristics
Implications
Ethnicity
Currently there appears to be system issues with regards to considering the potential
diagnosis of dementia. This issue appears to differentially affect people from different
ethnicities; people from certain minority ethnic groups are less willing to seek a
diagnosis, and when they do health professionals appear not to consider the diagnosis
as readily.
Diagnostic and screening tools need to be culturally appropriate, when they are not,
over-diagnosis or misclassification are potentially significant issues. Where they are
available, culturally specific tools should be used both in routine practice and research
studies.
Learning Disability
In syndromes where it is extremely common for people to develop dementia, it should
not be assumed that every individual will develop dementia.
25
Prevalence of dementia in population groups by protected characteristics
Recommendations
Research communities
1. Research communities should consider conducting future primary studies of the
system causes of under diagnosis within specific groups with protected
characteristics.
2. Qualitative research into the differential access of health services by different
ethnic groups mediated by different cultural beliefs is needed. These studies
should include the identification of barriers and enablers for those communities.
3. Further studies should be conducted to begin to explore the mechanism by which
lower socio-economic position is associated with increased prevalence of
dementia.
4. Research communities should also consider conducting future primary studies of
the prevalence of dementia in people of south-east Asian ethnicity within the UK.
Public Health England
5. PHE should use evidence from this review to indirectly estimate the potential
prevalence of dementia in specific groups. In particular, PHE should consider
conducting modelling studies to begin to estimate the impact on increasing
prevalence of dementia caused by known differential rates of:



depression between groups
diabetes between groups
cardiovascular disease between groups
Local authority and health care commissioners
6. Commissioners and providers of health and care services should ensure that
they fully consider those groups with protected characteristics who are at
greatest risk of developing and are living with dementia in their population, when
commissioning and providing services.
26
Prevalence of dementia in population groups by protected characteristics
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Mexican Americans. Alzheimer's and Dementia, 9, 622-631.
33
Prevalence of dementia in population groups by protected characteristics
Ott, A., Stolk, R. P., Van Harskamp, F., Pols, H. A., Hofman, A. & Breteler, M. M. 1999.
Diabetes mellitus and the risk of dementia: The Rotterdam Study. Neurology, 53, 193742.
Parveen, S., Blakey, H. & Oyebode, J. R. 2015. Information Programme for South Asian
Families (IPSAF): An external evaluation. Bradford: University of Bradford.
Pastor-Valero, M., Furlan-Viebig, R., Menezes, P. R., Da Silva, S. A., Vallada, H. &
Scazufca, M. 2014. Education and WHO recommendations for fruit and vegetable
intake are associated with better cognitive function in a disadvantaged Brazilian elderly
population: a population-based cross-sectional study. PLoS ONE [Electronic Resource],
9, e94042.
Peel, E. & Mcdaid, S. 2015. “Over the Rainbow” Lesbian, Gay, Bisexual and Trans
People and Dementia Project. Worcester: University of Worcester.
Piguet, O., Grayson Da Fau - Creasey, H., Creasey H Fau - Bennett, H. P., Bennett Hp
Fau - Brooks, W. S., Brooks Ws Fau - Waite, L. M., Waite Lm Fau - Broe, G. A. & Broe,
G. A. 2003. Vascular risk factors, cognition and dementia incidence over 6 years in the
Sydney Older Persons Study.
Pond, C. D., Mate, K. E., Phillips, J., Stocks, N. P., Magin, P. J., Weaver, N. & Brodaty,
H. 2013. Predictors of agreement between general practitioner detection of dementia
and the revised Cambridge Cognitive Assessment (CAMCOG-R). International
Psychogeriatrics, 25, 1639-47.
Potter, G. G., Plassman Bl Fau - Burke, J. R., Burke Jr Fau - Kabeto, M. U., Kabeto Mu
Fau - Langa, K. M., Langa Km Fau - Llewellyn, D. J., Llewellyn Dj Fau - Rogers, M. a.
M., Rogers Ma Fau - Steffens, D. C. & Steffens, D. C. 2009. Cognitive performance and
informant reports in the diagnosis of cognitive impairment and dementia in African
Americans and whites.
Prince, M., Knapp, M., Guerchet, M., Mccrone, P., Prina, M., Comas-Herrera, A.,
Wittenberg, R., Adelaja, B., Hu, B., King, D., Rehill, A. & Salimkumar, D. 2014.
Dementia UK: Update Second Edition. London: Alzheimer’s Society
Rauf, A. 2010. Caring for Dementia: Exploring good practice on supp. Bradford: Meri
Yaadain Dementia Team.
Russ, T. C., Batty, G. D., Hearnshaw, G. F., Fenton, C. & Starr, J. M. 2012.
Geographical variation in dementia: systematic review with meta-analysis. International
Journal of Epidemiology, 41, 1012-32.
34
Prevalence of dementia in population groups by protected characteristics
Saczynski, J. S., Beiser, A., Seshadri, S., Auerbach, S., Wolf, P. A. & Au, R. 2010.
Depressive symptoms and risk of dementia: the Framingham Heart Study. Neurology,
75, 35-41.
Saunders, P. A., Copeland, J. R., Dewey, M. E., Gilmore, C., Larkin, B. A., Phaterpekar,
H. & Scott, A. 1993. The prevalence of dementia, depression and neurosis in later life:
the Liverpool MRC-ALPHA Study. International Journal of Epidemiology, 22, 838-47.
Schaller, S., Mauskopf, J., Kriza, C., Wahlster, P. & Kolominsky-Rabas, P. L. 2015. The
main cost drivers in dementia: a systematic review. International Journal of Geriatric
Psychiatry, 30, 111-29.
Shooshtari, S., Martens, P. J., Burchill, C. A., Dik, N. & Naghipur, S. 2011. Prevalence
of Depression and Dementia among Adults with Developmental Disabilities in Manitoba,
Canada. International Journal of Family Medicine Print, 2011, 319574.
Simning, A., Conwell, Y. & Van Wijngaarden, E. 2014. Cognitive impairment in public
housing residents living in Western New York. Social Psychiatry & Psychiatric
Epidemiology, 49, 477-85.
Snowdon, J. & Lane, F. 2001. The prevalence and outcome of depression and
dementia in Botany's elderly population.
Su, X., Shang, L., Xu, Q., Li, N., Chen, J., Zhang, L. & Hua, Q. 2014. Prevalence and
predictors of mild cognitive impairment in Xi'an: A community-based study among the
elders. PLoS ONE, 9.
Tang, M. X., Cross P Fau - Andrews, H., Andrews H Fau - Jacobs, D. M., Jacobs Dm
Fau - Small, S., Small S Fau - Bell, K., Bell K Fau - Merchant, C., Merchant C Fau Lantigua, R., Lantigua R Fau - Costa, R., Costa R Fau - Stern, Y., Stern Y Fau Mayeux, R. & Mayeux, R. 2001. Incidence of AD in African-Americans, Caribbean
Hispanics, and Caucasians in northern Manhattan.
The National Lesbian Gay Bisexual and Trans Partnership 2014. The Adult Social Care
Outcomes Framework Lesbian, Gay, Bisexual and Trans Companion Document.
London: Department of Health
Thyrian, J. R. & Hoffmann, W. 2012. Dementia care and general physicians--a survey
on prevalence, means, attitudes and recommendations. Central European Journal of
Public Health, 20, 270-5.
Truswell, D. 2013. Black, Asian and Minority Ethnic Communities and Dementia –
where are we now? London: Race Equality Foundation.
35
Prevalence of dementia in population groups by protected characteristics
Venketasubramanian, Sahadevan, Kua, Chen & Ng 2011. Interethnic differences in
dementia epidemiology: global and asia-pacific perspectives. Dementia & Geriatric
Cognitive Disorders, 30, 492-498.
Vu, M., Hogan, D. B., Patten, S. B., Jette, N., Bronskill, S. E., Heckman, G., Kergoat, M.
J., Hirdes, J. P., Chen, X., Zehr, M. M. & Maxwell, C. J. 2014. A comprehensive profile
of the sociodemographic, psychosocial and health characteristics of Ontario home care
clients with dementia. Chronic Diseases and Injuries in Canada, 34, 132-44.
Wada-Isoe, K., Uemura Y Fau - Suto, Y., Suto Y Fau - Doi, K., Doi K Fau - Imamura, K.,
Imamura K Fau - Hayashi, A., Hayashi a Fau - Kitayama, M., Kitayama M Fau Watanabe, Y., Watanabe Y Fau - Adachi, Y., Adachi Y Fau - Nakashima, K. &
Nakashima, K. 2009. Prevalence of dementia in the rural island town of Ama-cho,
Japan.
Ward, A., Arrighi, H., Michels, S. & Cedarbaum, J. M. 2012. Mild cognitive impairment:
Disparity of incidence and prevalence estimates. Alzheimer's & Dementia, 8, 14-21.
White, L., Petrovitch, H., Ross, G. W., Masaki, K. H., Abbott, R. D., Teng, E. L.,
Rodriguez, B. L., Blanchette, P. L., Havlik, R. J., Wergowske, G., Chiu, D., Foley, D. J.,
Murdaugh, C. & Curb, J. D. 1996. Prevalence of dementia in older Japanese-American
men in Hawaii: The Honolulu-Asia Aging Study. JAMA, 276, 955-60.
Williams, A. P., Challis D Fau - Deber, R., Deber R Fau - Watkins, J., Watkins J Fau Kuluski, K., Kuluski K Fau - Lum, J. M., Lum Jm Fau - Daub, S. & Daub, S. 2009.
Balancing institutional and community-based care: why some older persons can age
successfully at home while others require residential long-term care.
Wu, Y. T., Lee, H. Y., Norton, S., Prina, A. M., Fleming, J., Matthews, F. E. & Brayne, C.
2014. Period, birth cohort and prevalence of dementia in mainland China, Hong Kong
and Taiwan: a meta-analysis. International Journal of Geriatric Psychiatry, 29, 1212-20.
Yamada, T., Kadekaru, H., Matsumoto, S., Inada, H., Tanabe, M., Moriguchi, E. H.,
Moriguchi, Y., Ishikawa, P., Ishikawa, A. G., Taira, K. & Yamori, Y. 2002. Prevalence of
dementia in the older Japanese-Brazilian population. Psychiatry and Clinical
Neurosciences, 56, 71-5.
Yusuf, A. J., Baiyewu, O., Sheikh, T. L. & Shehu, A. U. 2011. Prevalence of dementia
and dementia subtypes among community-dwelling elderly people in northern Nigeria.
Int Psychogeriatr, 23, 379-86.
Zigman, W. B. 2013. Atypical aging in down syndrome. Developmental Disabilities
Research Reviews, 18, 51-67.
36
Prevalence of dementia in population groups by protected characteristics
Appendix I. Randomly selected papers to
develop inter-reviewer consistency
Brinda, E., Rajkumar, A., Enemark, U., Prince, M. & Jacob, K. 2012. Nature and
determinants of out-of-pocket health expenditure among older people in a rural Indian
community. International Psychogeriatrics, 24, 1664-1673.
Connolly, A., Gaehl, E., Martin, H., Morris, J. & Purandare, N. 2011. Underdiagnosis of
dementia in primary care: variations in the observed prevalence and comparisons to the
expected prevalence. Aging & Mental Health, 15, 978-84.
Guerchet, M., Mbelesso, P., Ndamba-Bandzouzi, B., Pilleron, S., Desormais, I., Lacroix,
P., Aboyans, V., Jesus, P., Desport, J. C., Tchalla, A. E., Marin, B., Lambert, J. C.,
Clement, J. P., Dartigues, J. F., Preux, P. M. & Group, E. 2014. Epidemiology of
dementia in Central Africa (EPIDEMCA): protocol for a multicentre population-based
study in rural and urban areas of the Central African Republic and the Republic of
Congo. Springerplus, 3, 338.
Husaini, B. A., Cain, V., Levine, R. & Moonis, M. 2013. Variation in risk factors of
dementia among four elderly groups of hospitalized patients. Journal of the Neurological
Sciences, 333, e311.
Rattinger, G., Burcu, M., Dutcher, S., Zuckerman, I., Chhabra, P., Simoni-Wastila, L.,
Franey, C. & Walker, L. 2012. Racial variations in medication use among dementia
patients. Alzheimer's and Dementia, 1), P384-P385.
Russ, T., Batty, D. & Starr, J. 2011. Cognitive and socioeconomic predictors of survival
in dementia. Alzheimer's and Dementia, 1), S601.
Shooshtari, S., Martens, P. J., Burchill, C. A., Dik, N. & Naghipur, S. 2011. Prevalence
of Depression and Dementia among Adults with Developmental Disabilities in Manitoba,
Canada. International Journal of Family Medicine Print, 2011, 319574.
Stolder, M. E. 2012. Memory self-efficacy in cognitively normal older adults and older
adults with mild cognitive impairment. Ph.D., University of Iowa.
Venketasubramanian, Sahadevan, Kua, Chen & Ng 2011. Interethnic differences in
dementia epidemiology: global and asia-pacific perspectives. Dementia & Geriatric
Cognitive Disorders, 30, 492-498.
37
Prevalence of dementia in population groups by protected characteristics
Vu, M., Hogan, D. B., Patten, S. B., Jette, N., Bronskill, S. E., Heckman, G., Kergoat, M.
J., Hirdes, J. P., Chen, X., Zehr, M. M. & Maxwell, C. J. 2014. A comprehensive profile
of the sociodemographic, psychosocial and health characteristics of Ontario home care
clients with dementia. Chronic Diseases and Injuries in Canada, 34, 132-44.
38
Prevalence of dementia in population groups by protected characteristics
Appendix II. Grey literature
Those people acknowledged at the beginning who generously contributed relevant
literature made significant contribution to this review. The following reports, articles and
papers were sent to the review team and informed all aspects of this review:
All Party Parliamentary Groups on Dementia 2015. All party parliamentary group on
dementia: Five dementia priorities for the next Government. London: All Party
Parliamentary Group on Dementia. (All Party Parliamentary Groups on Dementia, 2015)
Ashcroft, J., Bishop, J.-A., Boston, G., Carney, D., Davis, S., Dooley, P., Dykes, N.,
Kelly, D., Lloyd-Ashton, N., Madden, M., Mitchell, C. & Payne, S. 2014. The Dementia
Challenge for LGBT Communities: a paper based on a roundtable discussion. London.
(Ashcroft et al, 2014)
Blood, I. & Bamford, S-M. 2010. Equality and diversity and older people with high
support needs. London: Joseph Rowntree Foundation. (Blood and Bamford, 2010)
Care Quality Commission 2012/13. The state of health care and adult social care in
England. London: Care Quality Commission (Care Quality Commission, 2012/13)
Care Quality Commission 2014. Cracks in the Pathway. People’s experiences of
dementia care as they move between care homes and hospitals. London: Care Quality
Commission.(Care Quality Commission, 2014)
Carers UK & Employers for Carers 2014. Supporting employees who are caring for
someone with dementia. London: Carers UK the voice of the carers. (Carers UK and
Employers for Carers, 2014)
Channa, H. & Ramsbottom, H. 2011. Living life with dementia. Local Age UK
contributions to quality outcomes for people living with dementia and their carers.
London: Age UK. (Channa and Ramsbottom, 2011)
Chidgey, A. 2009. Dementia: What every commissioner needs to know. Guidance on
delivering the National Dementia Strategy for England. London: Alzheimer's Society.
(Chidgey, 2009)
Clark, P., Mapes, N., Burt, J. & Preston, S. 2013. Greening Dementia A literature review
of the benefits and barriers facing individuals living with dementia in accessing the
natural environment and local greenspace. London: Natural England Commissioned
Reports. (Clark et al, 2013)
39
Prevalence of dementia in population groups by protected characteristics
Clayton, K., Butt, J., Islam-Barrett, F., Gardner, Z. & Race Equality Foundation 2013.
Dementia in black and minority ethnic communities: Meeting the challenge. London:
Age UK and the Race Equality Foundation. (Clayton et al, 2013)
Corner, L. & Jackson, M. 2011. Dementia in Northumberland: An Analysis of the
Numbers, Prevalence and Spatial Distributions of the Condition. Northumberland:
Newcastle University. (Corner and Jackson, 2011)
Davidson, S., Goodwin, J. & Rossall, P. 2012. Improving later life. Understanding the
oldest old. London: Age UK. (Davidson et al, 2012)
Hannan, R., Thompson, R., Worthington, A. & Rooney, P. 2013. The Triangle of Care
Carers Included: A Guide to Best Practice for Dementia Care. London: Carers Trust.
(Hannan et al, 2013)
House of Commons All-Party Parliamentary Group on Dementia 2013. Dementia Does
Not Discriminate. London: House of Commons All-Party Parliamentary Group on
Dementia. (House of Commons All-Party Parliamentary Group on Dementia, 2013)
Knapp, M., Prince, M., Albanese, E., Banerjee, S., Dhanasiri, S., Fernandez, J.-L., Ferri,
C., Knapp, M., Mccrone, P., Prince, M., Snell, T. & Stewart, R. 2007. Dementia UK: The
Full Report. London: Alzheimer’s Society. (Knapp et al, 2007)
Matthews, F. E., Arthur, A., Barnes, L. E., Bond, J., Jagger, C., Robinson, L. & Brayne,
C. 2013. A two-decade comparison of prevalence of dementia in individuals aged 65
years and older from three geographical areas of England: results of the Cognitive
Function and Ageing Study I and II. Lancet, 382, 1405-12. (Matthews et al, 2013)
Moriarty, J. & Manthorpe, J. 2012. Diversity in older people and access to services – an
evidence review. London: Age UK.(Moriarty and Manthorpe, 2012)
National Institue for Health and Care Excellence 2013. Quality standard for supporting
people to live well with dementia. London: National Institue for Health and Care
Excellence. (National Institue for Health and Care Excellence, 2013)
National Institue for Health and Care Excellence 2015. Dementia Supporting people
with dementia and their carers in health and social care. London: National Institue for
Health and Care Excellence. (National Institue for Health and Care Excellence, 2015)
Newbronner, L., Chamberlain, R., Borthwick, R., Baxter, M. & Glendinning, C. 2013. A
Road Less Rocky – Supporting Carers of People with Dementia. London: Carers
Trust.(Newbronner et al, 2013)
40
Prevalence of dementia in population groups by protected characteristics
Parveen, S., Blakey, H. & Oyebode, J. R. 2015. Information Programme for South Asian
Families (IPSAF): An external evaluation. Bradford: University of Bradford. (Parveen et
al, 2015)
Peel, E. & Mcdaid, S. 2015. “Over the Rainbow” Lesbian, Gay, Bisexual and Trans
People and Dementia Project. Worcester: University of Worcester. (Peel and McDaid,
2015)
Prince, M., Knapp, M., Guerchet, M., Mccrone, P., Prina, M., Comas-Herrera, A.,
Wittenberg, R., Adelaja, B., Hu, B., King, D., Rehill, A. & Salimkumar, D. 2014.
Dementia UK: Update Second Edition. London: Alzheimer’s Society (Prince et al, 2014)
Rauf, A. 2010. Caring for Dementia: Exploring good practice on supp. Bradford: Meri
Yaadain Dementia Team. (Rauf, 2010)
The National Lesbian Gay Bisexual and Trans Partnership 2014. The Adult Social Care
Outcomes Framework Lesbian, Gay, Bisexual and Trans Companion Document.
London: Department of Health (The National Lesbian Gay Bisexual and Trans
Partnership, 2014)
Truswell, D. 2013. Black, Asian and Minority Ethnic Communities and Dementia –
where are we now? London: Race Equality Foundation. (Truswell, 2013)
41
Prevalence of dementia in population groups by protected characteristics
Appendix III. Papers grouped by country
UK
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 study. British Journal of Psychiatry, 199, 119-25.
Connolly, A., Gaehl, E., Martin, H., Morris, J. & Purandare, N. (2011). Underdiagnosis of
dementia in primary care: variations in the observed prevalence and comparisons to the
expected prevalence. Aging & Mental Health, 15, 978-84.
Mukadam, N., Cooper, C. & Livingston, G. (2011). A systematic review of ethnicity and
pathways to care in dementia. International Journal of Geriatric Psychiatry, 26, 12-20.
Mukadam, N., Cooper, C. & Livingston, G. (2013). Improving access to dementia
services for people from minority ethnic groups. Current Opinion in Psychiatry, 26, 409414.
USA
Husaini, B. A., Cain, V., Levine, R. & Moonis, M. (2013). Variation in risk factors of
dementia among four elderly groups of hospitalized patients. Journal of the Neurological
Sciences, 333, e311.
Chin, A. L., Negash, S. & Hamilton, R. (2011). Diversity and disparity in dementia: the
impact of ethnoracial differences in Alzheimer disease. Alzheimer Disease & Associated
Disorders, 25, 187-95.
Potter, G. G., Plassman Bl Fau - Burke, J. R., Burke Jr Fau - Kabeto, M. U., Kabeto Mu
Fau - Langa, K. M., Langa Km Fau - Llewellyn, D. J., Llewellyn Dj Fau - Rogers, M. a.
M., Rogers Ma Fau - Steffens, D. C. & Steffens, D. C. (2009). Cognitive performance
and informant reports in the diagnosis of cognitive impairment and dementia in African
Americans and whites.
Gurland, B. J., Wilder De Fau - Lantigua, R., Lantigua R Fau - Stern, Y., Stern Y Fau Chen, J., Chen J Fau - Killeffer, E. H., Killeffer Eh Fau - Mayeux, R. & Mayeux, R.
Rates of dementia in three ethnoracial groups.
Noble, J. M., Manly, J. J., Schupf, N., Tang, M. X. & Luchsinger, J. A. (2012). Type 2
diabetes and ethnic disparities in cognitive impairment. Ethnicity & Disease, 22, 38-44.
42
Prevalence of dementia in population groups by protected characteristics
Lott, I. T. (2012). Neurological phenotypes for Down syndrome across the life span.
Progress in Brain Research, 197, 101-21.
Glymour, M. M., Kosheleva, A., Wadley, V. G., Weiss, C. & Manly, J. J. (2011).
Geographic distribution of dementia mortality: Elevated mortality rates for black and
white Americans by place of birth. Alzheimer Disease and Associated Disorders, 25,
196-202.
Simning, A., Conwell, Y. & Van Wijngaarden, E. (2014). Cognitive impairment in public
housing residents living in Western New York. Social Psychiatry & Psychiatric
Epidemiology, 49, 477-85.
Zigman, W. B. 2013. Atypical aging in down syndrome. Developmental Disabilities
Research Reviews, 18, 51-67.
Canada
Vu, M., Hogan, D. B., Patten, S. B., Jette, N., Bronskill, S. E., Heckman, G., Kergoat, M.
J., Hirdes, J. P., Chen, X., Zehr, M. M. & Maxwell, C. J. (2014). A comprehensive profile
of the sociodemographic, psychosocial and health characteristics of Ontario home care
clients with dementia. Chronic Diseases and Injuries in Canada, 34, 132-44.
Shooshtari, S., Martens, P. J., Burchill, C. A., Dik, N. & Naghipur, S. (2011). Prevalence
of Depression and Dementia among Adults with Developmental Disabilities in Manitoba,
Canada. International Journal of Family Medicine Print, 2011, 319574.
Qian, W., Schweizer, T. A. & Fischer, C. E. (2014). Impact of socioeconomic status on
initial clinical presentation to a memory disorders clinic. International Psychogeriatrics,
26, 597-603.
Australia
Snowdon, J. & Lane, F. The prevalence and outcome of depression and dementia in
Botany's elderly population.
Garvey, G., Simmonds, D., Clements, V., O'rourke, P., Sullivan, K., Gorman, D.,
Curnow, V., Wise, S. & Beattie, E. (2011). Making sense of dementia: Understanding
amongst indigenous Australians. International Journal of Geriatric Psychiatry, 26, 649656.
Karmel, R., Gibson, D., Anderson, P., Wells, Y. & Duckett, S. (2012). Care trajectories
through community and residential aged care services: Disease effects. Ageing &
Society, 32, 1428-1445.
43
Prevalence of dementia in population groups by protected characteristics
New Zealand
The search found no studies that reported the prevalence of dementia in people with
protected characteristics in New Zealand within the timeframe of the search.
Europe
Borjesson-Hanson, A., Waern, M., Ostling, S., Gustafson, D. & Skoog, I. 2011. Onemonth prevalence of mental disorders in a population sample of 95-year olds. American
Journal of Geriatric Psychiatry, 19, 284-91.
Thyrian, J. R. & Hoffmann, W. (2012). Dementia care and general physicians--a survey
on prevalence, means, attitudes and recommendations. Central European Journal of
Public Health, 20, 270-5.
Bernardi, L., Frangipane, F., Smirne, N., Colao, R., Puccio, G., Curcio, S. a. M.,
Mirabelli, M., Maletta, R., Anfossi, M., Gallo, M., Geracitano, S., Conidi, M. E., Di
Lorenzo, R., Clodomiro, A., Cupidi, C., Marzano, S., Comito, F., Valenti, V., Zirilli, M. A.,
Ghani, M., Xi, Z., Sato, C., Moreno, D., Borelli, A., Leone, R. A., St. George-Hyslop, P.,
Rogaeva, E. & Bruni, A. C. (2012). Epidemiology and genetics of frontotemporal
dementia: A door-to-door survey in Southern Italy. Neurobiology of Aging, 33, 2948e12948e10.
Avila-Castells, P., Garre-Olmo, J., Calvo-Perxas, L., Turro-Garriga, O., Alsina, E.,
Carmona, O., Perkal, H., Roig, A. M., Cuy, J. M., Lozano, M., Molins, A., Vallmajo, N.,
Lopez-Pousa, S. & Registry Dementia of Girona Study, G. (2013). Drug use in patients
with dementia: a register-based study in the health region of Girona (Catalonia/Spain).
European Journal of Clinical Pharmacology, 69, 1047-56.
South Africa
The papers retrieved included in several studies about multiple African countries but it
was not possible to isolate the South African data.
Japan
Venketasubramanian, Sahadevan, Kua, Chen & Ng (2011). Interethnic differences in
dementia epidemiology: global and asia-pacific perspectives. Dementia & Geriatric
Cognitive Disorders, 30, 492-498.
Catindig, J. a. S., Venketasubramanian, N., Ikram, M. K. & Chen, C. (2012).
Epidemiology of dementia in Asia: Insights on prevalence, trends and novel risk factors.
Journal of the Neurological Sciences, 321, 11-16.
44
Prevalence of dementia in population groups by protected characteristics
Studies from other countries
Malaysia
Momtaz et al, 2013
This paper estimated that in Malaysia education could be seen as a partial mediator
between ethnicity and dementia accounting for approximately 8% of the total effect of
ethnicity on dementia prevalence. The paper also reported that different rates of
depression between different ethnic groups accounts for some of the differences in
rates of dementia – with groups having higher rates of depression also having higher
rates of dementia.
Lee et al, 2012
This paper identifies that risk factors for people with mild cognitive impairment
increased with not exercising, obesity and being married (for women) even after
adjustment for age, ethnicity and education. There are many potential confounding
factors and the relative impact is not possible to assess from this study. It is unclear
what driving factors influence this result and cause it to be the opposite to that reported
in Canadian home care clients, where women with dementia were much less likely to be
married (Vu et al, 2014).
Africa
George-Carey et al, 2012
This paper provided further evidence of the impact of gender on the prevalence of
dementia with women being at greater risk. The paper also discussed the risk factors
that appeared to most significantly contribute to this gender based inequality. This
paper was supported by other papers suggesting that, in part, the gender inequality in
this context was mediated by lower levels of educational attainment (Yusuf et al, 2011)
and poorer socio-economic status (Gureje et al, 2011).
India
Gambhir et al, 2014
Within the context of India this paper identified four factors that appeared to be most
significant in contributing to the prevalence of dementia: gender, literacy, malnutrition
and obesity.
Brazil
Pastor-Valero et al, 2014
Dietary intakes of fruit and vegetables above the WHO recommended levels of
400g/day were significantly associated with a decreased prevalence of cognitive
impairment.
45
Prevalence of dementia in population groups by protected characteristics
China
Su et al, 2014
This paper identified the predicators of cognitive impairment in China as the following
three factors: age, education and stroke
Wu et al, 2014
This paper reported that a series of prevalence studies for East Asia suggest a rising
prevalence over time.
Korea
Kim et al, 2011, and Kim et al, 2014
These papers reported prevalence of dementia in Korea increasing over time, doubling
with each five-year age period.
46