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Overview of equality and health inequality issues and dementia

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Overview of equality and health inequality issues and dementia Jo Moriarty Social Care Workforce Research Unit


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‘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’ 7 May 2014 Equality and health inequality issues in dementia 2


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There are parts of the country where it takes six months to get a dementia diagnosis, which is absolutely scandalous. I want to get to a situation where the average across the whole country is no more than six weeks Jeremy Hunt, interview in The Telegraph, 27 February 2014 Government plans to improve regional variations in screening 7 May 2014 Equality and health inequality issues in dementia 3


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Where does this leave us? Prime Minister’s Dementia Challenge recognises variations in access to good dementia support Focus on regional variations in screening but we need more ‘hard’ evidence on other aspects Findings presented here will be familiar but offer a framework for discussions throughout the day 7 May 2014 Equality and health inequality issues in dementia 4


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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 7 May 2014 Equality and health inequality issues in dementia 5 Equality Act 2010


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Age Risk of dementia increases with age But increasing numbers diagnosed before age of 65 Difficulties getting a diagnosis Increased stigma May face different issues (e.g. employment, young children) 7 May 2014 Equality and health inequality issues in dementia 6 http://www.youngdementiauk.org/


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Disability Office for National Statistics data shows variations by age, region, ethnicity, income Concerns about co-morbidities long term conditions ‘Diagnostic overshadowing’? 7 May 2014 Equality and health inequality issues in dementia 7


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Dementia and learning disability Better life expectancy Higher prevalence of Alzheimer’s disease among people with Down’s syndrome Also higher risk of other health conditions Reported incidence varies but as much as 25% in over 60s (Kozma, 2008) 7 May 2014 Equality and health inequality issues in dementia 8 Joseph Rowntree Foundation & University of Edinburgh DVD


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Gender More women than men have dementia May reflect different life expectancy AD/VaD similar for men & women until extreme old age (Ruitenberg et al, 2001) Others say different prevalence rates (e.g Roberts et al, 2012) 7 May 2014 Equality and health inequality issues in dementia 9 Image from Casual Fridays blog


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Sharpest differences in care homes? More women than men live in care homes Women tend to marry men older than them and to live longer Poverty rates worse among ‘single’ women households About 80% social care workforce are women 7 May 2014 Equality and health inequality issues in dementia 10 Image Scottish Parliament website


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Sexual identity Neglect of lesbian, gay, and bisexual (LGB) sexual identities in research on dementia Experiences of discrimination as carers (Price, 2008) More research with older LGB people (Guasp, 2011) Previous experiences of stereotyping and prejudice major barriers to using services ‘de-gaying’ home before visits Equality and health inequality issues in dementia 11 Image from Alzheimer’s Society website 7 May 2014


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Possible inequalities Barriers to using health and care services Higher proportions of older LGB people living alone (Guasp, 2011) Higher proportions of older LGB people living in poverty (Uhrig, 2013) US research shows effects on social support mixed 7 May 2014 Equality and health inequality issues in dementia 12


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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) 7 May 2014 Equality and health inequality issues in dementia 13


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Gender identity Reminder that gender identity and sexual identity not the same ‘Binary’ gender distinctions do not reflect many people’s perceptions of self We don’t routinely ask whether people self identify as transgender/intersex/or other identity Can surmise there is population of older people who transitioned in 1970s but no data 7 May 2014 Equality and health inequality issues in dementia 14


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Marginalised Differing views as to advantages/disadvantages of LGBT grouping Evidence base extremely small for everything, let alone dementia Research with transgender people suggests that many people have had experience of discrimination which influences ‘help seeking behaviour’ in old age 7 May 2014 Equality and health inequality issues in dementia 15


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Some US research Conference paper using data from International MetLife Survey on Preparation for Aging in Trans-Identified Populations (McFadden et al, undated) Older transgender adults (aged 60 and over) very concerned about developing dementia Concerned about intimate care Concerned they will be treated in ways not congruent with gender identity 7 May 2014 Equality and health inequality issues in dementia 16


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Ethnicity 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 (LaFontaine, 2007) Carers may experience particular difficulties (Bowes & Wilkinson, 2003) 7 May 2014 Equality and health inequality issues in dementia 17 Image from 2009 Dementia Strategy


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Projected increase in numbers of BAME people with dementia 7 May 2014 Equality and health inequality issues in dementia 18


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Religion In some instances may be more appropriate to look at ethno-religious groupings (Hills et al, 2010) But generally reported in terms of ethnicity Risks of stereotyping In 2001 Census Chinese people were the ethnic group most likely to say they had no religious affiliation 7 May 2014 Equality and health inequality issues in dementia 19


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Religion and ethnicity (census) 7 May 2014 Equality and health inequality issues in dementia 20


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Socio-economic status 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? 7 May 2014 Equality and health inequality issues in dementia 21


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Conclusions We have multiple identities so important not to look just at one aspect of ourselves Very limited data looking at interactions between different protected characteristics Review for Age UK (Moriarty & Manthorpe, 2012) showed data on many characteristics is not collected or not reported Considering these factors is an essential step in delivering more person centred dementia care 7 May 2014 Equality and health inequality issues in dementia 22


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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 authors and not the Department of Health 7 May 2014 Equality and health inequality issues in dementia 23


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