This document discusses equality and health inequality issues related to dementia. It summarizes research showing how factors like age, gender, ethnicity, sexual orientation, and socioeconomic status can influence one's experience with dementia. While dementia affects everyone, individuals experience it differently based on their personal characteristics and life experiences. The Equality Act of 2010 provides a framework for examining these types of inequalities. Recognizing the multiple and intersecting aspects of people's identities is important for developing more personalized dementia care.

1. Equality and health
inequality issues and
dementia
Jo Moriarty
King’s College London
Social Care Workforce Research Unit

2. ‘By 2015 every person with dementia
will be able to say’
 ‘I get the treatment and
support which are best for
my dementia and my life’
 ‘I know what I can do to
help myself and who else
can help me. My community
is working to help me to live
well with dementia’
 ‘I wanted to take part in
research and was able to do
so’
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3. ‘Dementia does not discriminate’
 Dementia affects all of us
 But we experience
dementia as individuals:
 Our age, gender and so on
 Our life experiences
 Our personality
 Challenge is to develop
support that recognises
BOTH these aspects
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4. Equality Act 2010: A framework for
looking at inequalities in dementia
 Rationalised existing legislation
 Some new provisions
 Nine ‘protected characteristics’
 age
 disability
 gender reassignment
 marriage and civil partnership*
 pregnancy and maternity*
 race
 religion or belief
 sex
 sexual orientation
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5. Age (1)
 Risk of dementia increases
with age
 Social inequalities in
health widen and
converge at different ages
 Gerontologists suggest
health in old age is
affected by inequalities
across life course
Estimated number of people
with dementia by age
From Dementia UK report
65-69 70-74 75-79 80-84 85-89 90-94 95+
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6. Age (2)
 But increasing numbers
diagnosed before age of 65
 42,325 is latest estimate for
UK, includes people in
30s/40s
 Difficulties getting a
diagnosis
 Increased stigma
 May face different issues
(e.g. employment, young
children)
http://www.youngdementiauk.org
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7. Disability
 Office for National
Statistics data shows
variations by age, region,
ethnicity, income
 Only 17% of people have
‘just’ dementia
(Banerjee, undated)
 Extent of ‘diagnostic
overshadowing’?
0 20 40 60 80
75 and over
65-74
45-64
25-44
16-24
ONS data on disability 2012
Longstanding illness or disability Limiting LSI
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8. Dementia and learning disability
 Poor estimates of number of people with a
learning disability, especially those aged 18
and over
 In 2010, estimated 58,897 of 191,469 learning
disabled adults aged 50+ (Emerson et al, 2010)
 Large rises in numbers with dementia
expected
 Better life expectancy
 Higher prevalence of Alzheimer’s disease
among people with Down’s syndrome
 Reported incidence varies but as much as 25%
in over 60s (Kozma, 2008)
 Also higher risk of other health conditions
Joseph Rowntree Foundation & University of
Edinburgh DVD
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9. Gender
 More women than men have
dementia
 Some say mainly attributable
to different life expectancy
 Others say different
prevalence rates (e.g Roberts
et al, 2012)
 We need to include a
gender dimension in service
evaluations (Bamford, 2011)
Image from Casual Fridays blog
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10. Sexual identity (1)
 Only beginning to be addressed in
dementia research
 Experiences of discrimination as carers
(Price, 2008)
 Stonewall research with LGB
people aged 55 and over (Guasp,
2011)
 41 per cent of older LGB people live
alone compared to 28 per cent of
heterosexual people
Image from Alzheimer’s Society website
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11. Sexual identity (2)
 Stonewall research also found that:
 Gay and bisexual men aged 55 and over much more likely to be single (40%
compared to 15% of heterosexual men)
 Differences in relationship status between lesbian and bisexual women not
statistically significant (30% compared to 26%)
 Previous experiences of discrimination were a major barrier to using health and
care services for LGB men and women
 Uhrig (2013) found that:
 Higher proportions of older LGB people are living in poverty
 Less than one per cent of those aged 65+ self-identify as gay or lesbian compared
with 4% of those than those aged 16-24
 US research shows effects of sexual identity on social support
mixed
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12. But beginning to be addressed
 Dementia Engagement and
Empowerment Project
(DEEP) has funded new
project in Birmingham
 ONS has been testing
questions on sexual
identity in Integrated
Household Survey (2012)
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13. Gender identity
 Gender and sexual identity are not the same
 ‘Binary’ gender distinctions do not reflect many
people’s perceptions of themselves
 We don’t routinely ask whether people self identify as
transgender/intersex/or other identity
 We know there is a population of older people who transitioned in
1970s
 We know there is a population of people who identify as
transgender or who cross dress without having surgery or taking
hormone treatments
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14. Marginalised
 Differing views as to advantages/disadvantages of
grouping with LGBTQ people
 Research with transgender people suggests many
people have had experience of discrimination
which may influence ‘help seeking’ behaviour
 Research with international sample of transgender
adults aged 60 and over (McFadden et al, undated)
found they were very concerned about developing
dementia
 Concerned about intimate care
 Concerned they will be treated in ways not congruent
with gender identity
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15. Ethnicity
Projected increase in numbers of BAME people with
dementia (APPG, 2013)
2013
2026
2051
50000
25000
172000
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16. What we currently know
 Emerging picture of different risk
factors for different types of
dementia
 Present later to services when
dementia is more severe
(Mukadam et al, 2011)
 Knowledge about dementia
appears to be less (Seabrooke &
Milne, 2009)
 Stigma may be greater in some
communities (LaFontaine, 2007)
 Carers may experience particular
difficulties (Bowes & Wilkinson,
2003)
Image from 2009 Dementia Strategy
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17. Religion
 In some instances may be more appropriate to look at
ethno-religious groupings when examining social
inequalities in health (Hills et al, 2010)
 But generally reported just in terms of ethnicity
 Limited research looking at way religious beliefs influence
help-seeking behaviour
 Emerging evidence on how religious beliefs influence
ideas about dementia (Regan et al, 2012, Regan, 2013)
 Risks of stereotyping
 In 2001 Census, Chinese people were the ethnic group most likely to say they
had no religious affiliation
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18. Religion and ethnicity (2010 census)
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Christian Sikh Muslim Jewish Hindu Buddhist Other No
religion
White Mixed Asian Black Other
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19. Socio-economic status and
intersectionality
 Research in this area is mainly from the US
 Suggests there are risk factors related to socio-economic
status
 Education as a ‘protective’ factor?
 Poorer physical and mental health throughout the life course?
 Research often presented in terms of one
characteristic but better to think of intersecting
or overlapping characteristics
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20. Conclusions
 Everyone has the right to the same opportunities to
plan what support they want and have access to
treatments that may delay progression of dementia
 Social inequalities become increasingly important as
we learn more about potential for risk-reduction in
dementia
 We have multiple identities so important not to look
at just one aspect
 Considering these factors is an essential step in
delivering more person centred dementia care
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21. Acknowledgements and
disclaimer
The Social Care Workforce Research Unit receives funding from the Department
of Health Policy Research Programme. The views expressed here are those of the
author and not the Department of Health
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