Diversity and inequality in dementia care

Manthorpe J (2023) Diversity and inequality in dementia care. Journal of Dementia Care 31(5)15-17

There are notable inequalities both among people living with dementia and within the dementia care workforce. Jill Manthorpe explores the many social factors that can determine people’s experience of dementia and dementia services, and argues that reducing inequalities needs to be part of person-centred care and policy.

We are beginning to know far more about the links between public policies which have led to increased inequality in our society and the experiences of people affected by dementia who come from socially disadvantaged communities. The contents of this issue of the Journal of Dementia Care show the wide variations in personal experiences and suggest critical points to debate as we move towards the countdown to the next UK general election, scheduled to be held no later than 28 January 2025.

The greater diversity of people affected by dementia, as evident in visual presentations in policy, service and professional websites and documents, has been emerging over recent decades. But people affected by dementia have always been diverse, hidden in plain sight as residents of long-stay hospitals and previously Poor Law hospitals and workhouses, or staying at home with family in conditions of care but also sometimes of neglect.

For the better off there were servants and companions to provide support, aided in families of all circumstances by single daughters or “needy” relatives, and sometimes at their mercy. For the poor there was the workhouse, the back wards of asylums and hospitals, or living on parish charity and their family or worse. The financial circumstances of people living with dementia have been treated as largely reflective of social conditions of the times. What then has changed?

Poverty is the price of disability

First, we have learned from disability activists and advocates that poverty is the price of disability for many people, as well as often the cause. The loss of potential to earn from employment for people who are less able to work when facing cognitive decline means for some people with dementia there is a rapid loss of income. Often more gradual is the impact of providing family care, since carer leave for people in the UK is very limited and family carers often give up paid work to support their relative.

Finnish researcher, Teppo Kröger (2023) argues that there are three different domains of care poverty among older people (personal care poverty, practical care poverty and socio-emotional care poverty). This can help us think about deprivation as wider than in simple monetary terms. Indeed, a term often used in the context of high owner occupation in England is that many older people are “capital rich and income poor” which applied to dementia has many implications, such as wanting to stay in one’s home and neighbourhood but feeling unable to take on the upheaval of repairs, renovations, and insulation or the running costs of a warm home.

As covered in JDC across the years, some very helpful initiatives can help here but they are not widespread and the resources may not be available to do the outreach work necessary to engage with families or individuals affected by dementia who might not trust the offers being made. Loss of trust has been the consequence among some groups of the pandemic experience, compounded for some by the Windrush scandal and continued compensation delays.

But, as other disability experts note, money does matter. There are increased costs and expenses of living with illness and long-term conditions. These arise from the need for extra heating, wear and tear on clothes and furnishings, special foods, equipment, travel costs and care costs. While some government help is available for such expenses, the under-claiming of benefits is substantial and often a complex process.

Surprisingly the implications of poverty, financial disadvantage and quantification of the costs of being affected by dementia are not commonly mentioned in dementia discussions, in contrast to the debates about housing inheritance. It is hard to think how anyone can “live well with dementia” when troubled by financial worries, and perhaps approaches such as “poverty proofing” services could be applied to dementia support (see Kersley 2023).

Current interest in the impact of the rising cost of living may be one way in which this subject is coming more into the open, but wider than this is growing interest in the social determinants of health, through which poverty plays such a huge part in health and life inequalities. Perhaps one next step for dementia research and services will be to join up with groups worldwide and nationally seeking to promote greater health equity (https://www.instituteofhealthequity.org/ )?

Care equity matters too, for years of reductions in local government finance have meant many people living with dementia have been excluded from publicly funded social care or have had their care and support reduced. For those whose carers have had to give up employment or reduce their work commitments there will also be long-term disadvantages of reduced pensions in later life.

Cultural competence in dementia care

The second point is the growing appreciation that culture, ethnicity and migration combine together to form the person at the centre of ambitions for person-centred care. The new third edition of the edited textbook, Ethnicity and the Dementias (Yeo et al 2019), points to the need for dementia care to be culturally competent, with race and ethnicity understandings and knowledge needed in clinical care and health planning.  This accumulation of evidence, mostly from the United States (US), covers both genetic and cultural factors, prevention and treatment, and enfolds family care within its separate coverage of 11 ethnic groups relevant to US dementia care.

Yeo et al’s revised text will perhaps be increasingly relevant to UK practice as new migrant groups are likely to seek dementia support, such as the small but growing Latino-American population. As with any other health and care provision, understanding local populations will be an essential part of dementia care practice and service planning. No longer will it be enough, if it ever was, simply to draw attention to growing numbers of older people, since their heterogeneity is remarkable.

Diversity among people affected by dementia applies too to the workforce, particularly in social care. Largely female and with people from minority ethnic groups over-represented in this workforce, it is also characterised by the problems of low pay and often insecure employment conditions. As Curry et al (2023) note, these problems were building up for several decades, only to be amplified by the stressors of the pandemic. Care for people affected by dementia has surely got to include care for people on minimum wages, zero hours contracts and with poor terms and conditions of employment. Too often, little is said about how such conditions and associated worries and pressures must be affecting people receiving social care support.

Genuinely inclusive services

Dementia services that are genuinely inclusive are likely to be effectively responsive to the needs of all communities in our diverse society and this issue of JDC contains many examples of what people can do to make positive change. The Equality Act 2010 was a substantial move forward in many respects, not least enabling us to talk of “protected characteristics” in a meaningful way and to take small but important steps in collecting data and then thinking about what it meant.

Some time ago my colleague Jo Moriarty and I were asked to report the evidence on access to services by diverse older people and explored areas such as day centres, befriending schemes, falls services and handyperson services. We found that many did not collect data to show that they were offering services that reflected the communities they served (Moriarty & Manthorpe 2012).

However, the UK has far more data now, particularly from the NHS but also social security/taxation records and much increased analytical capacity. The interplays between race/ethnicity, sex, sexuality, gender identity, class/socio-economic status, lifelong/recent deprivation and dementia, and indeed of other protected characteristics (the terms used in the Equality Act 2010), could be more often analysed and then re-analysed. It may be that new studies are needed, but not before existing data have been used to their maximum realistic potential.

A recent example of making good use of data comes from Mukadam and colleagues (Mukadam et al 2022) who linked NHS primary care electronic health records, hospital episode statistics and mortality (death) data for people aged 65 years and over. They found dementia incidence was higher in black people than white, and that South Asian and black people living with dementia had a younger age of death than white participants. Implementing the recommendations of such studies, of which there are increasing numbers, should perhaps be a joint priority for the dementia community.

Sadly, researchers have not always been the shining light in providing evidence of diversity in their studies and reflecting on the subject, with notable exceptions in the UK, where this work has been covered since the early days of JDC and the UK Dementia Congress. Influential funders such as the National Institute for Health and Care Research (NIHR) are now far more insistent that research should be inclusive in its values, operations and excellence.

Unlike many others making commitments to this, NIHR has acknowledged the reasons why EDI (equality, diversity and inclusion) is so important to research: “Matters that have been highlighted nationally and globally include concerns around inequitable funding; under-representation in research participation; complex cultural issues of bullying, harassment and victimisation; and imbalances and inequalities associated with sexual orientation, gender identity, socio-economic status, geographic location and ability to access health and social care.” This list applies equally of course to dementia research.

As the NIHR and others acknowledge, it can be useful to start change processes with thinking about the protected characteristics of the Equality Act 2010, say in relation to access and acceptability. However, any EDI strategy needs to extend to other factors which may also impact health and social care inequalities: “The concept of intersectionality – a framework that acknowledges that all people have unique experiences of discrimination and disadvantage exacerbated by the overlap of multiple social identities – is also fundamental to this strategy” (NIHR 2022).

Intersectionality is threaded through the contributions to this issue of JDC. Whether writing of personal or professional experiences or highlighting good practice, there is substantial evidence that good dementia care is built on the foundation stones of person-centredness, which has to include thinking about a person’s identity, relationships and their social context.

Combined with growing understanding of the social determinants of health and wellbeing, dementia care seems to be moving from understanding to thinking more about how to promote equity and social justice and what gets in the way of this. In this way, EDI developments may help other changes wanted by people affected with dementia to the benefit of all.

References
Curry N, Oung C, Hemmings N, Comas-Herrera A et al (2023) Building a resilient social care system in England: What can be learnt from the first wave of Covid-19? London, Nuffield Trust.
Kersley A (2023) “Poverty proofing” and a national strategy for the cost-of-living crisis. BMJ 381 1183.
Kröger T (2023) Care Poverty: When Older People’s Needs Remain Unmet. London: Palgrave Macmillan.
Moriarty J, Manthorpe J (2012) Diversity in older people and access to services: an evidence review, London: Age UK.
Mukadam N, Marston L, Lewis G, Mathur R et al (2023) Incidence, age at diagnosis and survival with dementia across ethnic groups in England: A longitudinal study using electronic health records. Alzheimers and Dementia 19(4) 1300-1307.
NIHR (2022) Equality, Diversity and Inclusion Strategy 2022-2027. London: NIHR.
Yeo G, Gerdner L, Gallagher-Thompson D (eds) (2019) Ethnicity and the Dementias. London: Routledge.