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Fair-weather rhetoric?

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The term ‘underserved populations’ is used frequently at the moment in relation to certain groups of people affected by dementia. But what do we actually mean when we talk of an underserved population? The main issue is about the challenge of delivering services to minority groups; which by definition means any group of people that is smaller than the larger general population. Minority group membership is often based on differences in observable characteristics or practices, such as ethnicity, race, religion, sexual orientation, or disability. Sociologically, being of member of such a minority group often implies that you may experience relative disadvantage as compared to members of the wider, dominant social group and as such they tend to lack power in society.

There has been much debate over the last decade in health and social care services as to how to refer to such groups of people affected by dementia. Terms like ‘hard-to-reach’ have been used; however, this term has been challenged with critics stating that actually many of the vulnerable and minority groups to which this term has been applied are actually very easy to reach. I also think this term implies that it is the minority groups’ responsibility to ensure they are more visible to services and thus partly their own fault they are hard-to-reach. More likely, the responsibility is deflected from the government and the responsibility rest with local health and social care services and for them to adapt to diversity within the populations that they serve.

A more recent term, and perhaps one that is perhaps more sensitive to minority groups, is where a group is considered to be ‘seldom heard’. In 2017 the National Dementia Action Alliance launched their campaign ‘From Seldom Heard to Seen & Heard’ to improve outcomes for people living with dementia and their carers who they argue come from a seldom heard group. For me, this raises the question of are these groups seldom heard or is it that they are seldom listened to by services?

So let’s move on to the term ‘underserved’. This a descriptor originates from the USA to include the economically disadvantaged, racial and ethnic minorities, the uninsured (as in health insurance), low-income children, older people, people who are homeless, and those with other chronic health conditions, including severe mental illness. What unites an underserved group are where they share certain characteristics, such as; poor access to health care services, barriers to accessing primary health care services or a lack of familiarity with the health care delivery system. Largely though such underserved populations bear the brunt of societal discriminatory and inequitable practices. Don’t get me wrong – I am a great advocate of the equalities agenda and laws. They have made a big difference in dementia care, as with other minority groups, with all of us being more aware of the need to avoid discrimination based simply on someone’s ‘differences’. Indeed, most public bodies are required to take account of the diverse nature of modern society with any consultation being socially inclusive. The increasing consultation with the patient and public populations to seek their views and experiences of health and social care services has been a success story of the recent decade.

However, the world is very different today when faced with a coronavirus pandemic. In a health crisis, such as this, a danger for underserved populations is not just the risk of contracting the virus but a re-emergence of discriminatory practices. At such times, there is a risk that underserved populations simply become viewed as un-deserved populations. In a pandemic, triage in access to care and treatment starts long before a person becomes ill with the disease in an attempt to plan resource management. The British Medical Association set out guidance to support doctors in making decisions about which patients get treatment where resources are limited, such as ventilators to coronavirus patient’s that have acute respiratory distress and also to ration limited equipment and prevent the NHS becoming overwhelmed. Such crises seem to force us into situations where we place greater value on younger healthier groups. For people with dementia, there is a difficult balance to strike between their entitlement to the best care against the increased risks to their health of admitting them to hospital and exposing them to the virus. However, are we actually seeing a situation where people with dementia are being discriminated against and clearly moving down the priority order of those people who are deemed ‘worth saving’? Has the equalities and anti-discrimination agenda hit a wall of fair-weather rhetoric for people with dementia? We have championed long and hard for people with dementia to be granted equal human value but we now see them again starting to fall towards the back of a very long queue.



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