dementia – The Dot.

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Any discussion of universal healthcare is seemingly conducted as if it is a solely partisan issue. The left wants universal healthcare, the right doesn’t — so goes the argument. However, the fact of the matter is that the United Nations’ Universal Declaration of Human rights, article 25, states that:

(1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.

The countries that have signed up to this declaration have implicitly or explicitly accepted healthcare as a human right. Most countries provide free or affordable healthcare to its citizens, but how it manifests for non-citizens seems to differ between countries. We can do better.

War and natural disasters seem common and omnipresent, and will likely increase with climate change. Unsurprisingly, these calamitous events will also leave the most vulnerable exposed to health risks — particularly women, children, the elderly, and the chronically ill. Particularly in war and conflict areas, getting healthcare to the most vulnerable populations can be an arduous task, made more difficult by various state actors and disparate political motivations. Attacks on humanitarian aid workers make it difficult for vital medical care to arrive to the people who need it most. The World Health Organisation’s (WHO) 2017 report estimates that 14.8 million people in Yemen have no access to healthcare, and the International Medical Corps has said that delivering healthcare to affected populations in the country is difficult with major infrastructure destroyed, and the lack of a government that could support them. In addition, Amnesty International reports that the Saudi-led coalition has restricted the access to essential goods such as medical supplies from entering Yemen. The situation in Syria is equally dire, with the WHO reporting calamitous conditions in Syrian refugee camps, and additionally refugee camps housing former members of ISIS and their children have also not received adequate medical assistance. Chatham House experts recently wrote that many people with chronic illnesses end up being under-treated in war and conflict as the nature of chronic illnesses and the nature of war make it logistically very difficult to help them. In many instances, these local makeshift hospitals end up being in rebel-held territories with Western aid organisations fearing a loss of funds if they were to support these hospitals. From a security and counterterrorism point of view this might make sense, but the fact of the matter is that vulnerable people will see their right to medical assistance denied. It is clear that healthcare as a right is often a casualty of war, with deliberate attacks on hospitals, as well as restrictions on humanitarian aid depending on whose side the territory is held by, creating more issues for the local population and constituting continuous violations of international humanitarian law and human rights.

Closer to home, it is often the case that refugees and immigrants do not get to enjoy free healthcare in the same way citizens of a country can. A report by the Equality and Human Rights Commission published in 2018, showed that asylum seekers in Britain are often afraid of seeking medical care for fear of high costs, or being tracked by the Home Office. Ambiguities and an increasingly hostile environment for migrants, refugees, and asylum seekers, create inaccessibility to healthcare for an already vulnerable group of people. Guaranteeing that everybody, regardless of background and citizenship status, gets access to healthcare that respects human rights, requires political will and leadership. Moreover, people with mental health issues are still often subject to violations of human rights in mental health care where they are often stripped of agency and dignity — this has been the observation of the UK’s parliamentary and health service ombudsman as well. In the United States, many black women are dying in childbirth because they are not listened to in health settings and their human rights are systematically violated. Worldwide, people with dementia are still fighting for their human rights to be respected. There is still a lot to be done.

So, how do we make sure that human rights are respected and guaranteed, even in disaster and conflict zones, even when someone is an asylum seeker or a refugee, and even when the patient is disabled, mentally ill or cognitively impaired? There is no simple answer, but political leadership that sees beyond manoeuvring and posturing to behold the human cost of war, conflicts, health disparities locally and globally, and the victims it makes, would go a long way. In an international setting the countries with vetos in the UN security council have a particular responsibility to look beyond political expediency and geopolitics when the stakes are so high and there are no winners. The WHO has a prime position as an intergovernmental organisation to coordinate medical response and epidemiological research, and assist local governments after a disaster or in conflict zones. Human rights organisations monitoring, researching, and advocating for human rights to be respected, in conflict and in peacetime, play a vital part in holding the powers that be to account. Academic research in how to best coordinate humanitarian aid, particularly medical aid, in disaster and conflict zones is imperative. Non-governmental aid organisations and their local partners on the ground need continued support to take care of affected citizens regardless of their affiliations in war. Disability and mental health advocates need to be listened to. And finally, as citizens we have a duty to be aware and cognisant of our human rights, the inalienability of it, and that by respecting them we are doing not only the other, but our selves, a great service. By being informed and educated on the role human rights play in our day to day lives, we can lobby and advocate our local governments, and in turn politicians of good will can effect change. Eleanor Roosevelt, the mother of the UN Declaration of Human Rights, said it best:

Where, after all, do universal human rights begin? In small places, close to home – so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighbourhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.

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When we think of dementia we often think of the elderly, probably in care homes, possibly our own family. Most of our visions are of dementia’s manifestation in high income countries. The truth of the matter is, that an estimated 58% of people with dementia live in low- and middle-income countries (LMIC) . To add insult to injury, it was estimated that only 10% of the research into dementia is focused on people living with it in LMIC (Prince et al., 2008).

Many people in LMIC will go undiagnosed, as people often see dementia as a normal part of ageing and those suffering are often stigmatised. Seeing dementia as a normal part of ageing is in and of itself not limited to LMIC, as many people in high income countries at the very least seem to think it is a kind of inevitability. Moreover, stigma certainly also still exists in the West. Many people who are diagnosed indicate that they feel isolated, that their lives are over, that people stop treating them as fully human, and in extreme cases in certain parts of the world elderly people — primarily women — with dementia are accused of witchcraft and ostracised, and in the worst cases, even killed.

Because dementia is a disorder that will affect more and more people as populations, on average, get older and older, it is often seen by organisations such as the World Health Organisation (WHO) and Alzheimer’s Disease International as a global health priority. Global health is a relatively new concept, with a relatively vague definition, but is generally taken to mean the promotion of equality when it comes to access and quality of healthcare worldwide. Global mental health, has a similar remit only focused on the psyche rather than (just) the physical body. Although these ideals are lofty, and the UN declared health care a human right (article 25 of the UN Declaration of Human Rights — I suggest you give the whole thing a read), there is always the looming possibility of Westerners imposing their own view on others; some would even go as far as to say it is a form of neocolonialism. That does not, however, mean that I think we should throw out the baby with the bathwater. Global (mental) health can be directed by the people of the Global South with the Global North and its institutions (such as the UN) aiding and advocating on their behalf. This means employing, and listening to, locals who will take the cultural sensitivities into account (examples include Chief Kiki Laniyonu Edwards who works to tackle stigma of dementia in Nigeria; Zimbabwean grandmothers offering therapy, Benoit Ruratotoye, a Congolese psychologist trying to tackle violence against women and particularly help the spouses of women raped as a weapon of war to come to terms with what happened, or Women for Afghan Women) . It means adjusting our diagnostic manuals and criteria so that they are relevant and valid within the country’s specific cultural context. It is working together with the spirit of true equality, seeing the people in LMIC/Global South not as people we need to convert, but people we can work with for the benefit of us all.

Returning to the lack of basic research on dementia and its manifestations in LMIC, I think it is important as scientists to be aware of our own biases and our tendency to extrapolate and apply our Western experience to that of everybody else. It is important for researchers in LMIC to have the funds and means to conduct studies on the manifestation of not only dementia, but mental health issues, in their own people and in their own cultures. It is vital that Western universities collaborate, not as superiors but as true and equal partners with the desire to bring about equality in access and quality of healthcare.

I am of the belief that basic scientists, local experts, global health professionals and policymakers would be best served in working together. Issues such as dementia and depression have different cultural manifestation in different cultural contexts. It is vital that policy is made on the basis of scientific knowledge, local knowledge, cultural sensitivity and a genuine belief in promoting equality of access and quality of healthcare. Perhaps the UN as an institution, and definitely its human rights declaration, is too optimistic or idealistic in a world full of violent realities. But it is most certainly the kind of hope and optimism we need on this blue planet we all share. Combining our knowledge (both Western and non-Western, scientific and traditional), using our privileges for good, and looking beyond our own bubble without superiority is the only way we can get closer and closer to the lofty dreams and aspirations of a truly equitable world where human rights, including the right to healthcare, are respected.

Tag: dementia

Healthcare as a human right.

Dementia, global health, and policy.