Dementia, global health, and policy

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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.

Policy and science

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An unofficial rule in science seems to be that you do not get involved in politics. Of course, the hierarchical structure of academia is all about politics, but it is not that kind of politics — party politics. Government politics. Messy politics. The kind of politics that involves pesky humanities graduates from elite universities, that involves campaigns and lobbyists. Not the ‘real world’ politics. That does not mean that scientists are not politically engaged: au contraire! You will find many a scientist lamenting the state of local or global politics (in the UK this usually pertains to Brexit), yet there are few scientists that are actively involved in politics or policy from the inside. That should change.

There seems to be a mutual misunderstanding between policymakers and scientists when it comes to policymaking. Scientists seem to be apprehensive about policy and the messy business of government where compromises are necessary, and the cold hard facts don’t always seem to be the most important factor when making decision. On the policy side of the equation, policymakers think science is too slow and scientists are too ignorant about the realities of the real world where that compromises and appealing to a large base are par for the course. It seems like an impossibility to bring these two together, but it’s my belief that the expertise of scientists is, and should be, highly valued in policy, and policy should be at the very least valued by scientists in return.

Scientists are primarily trained in being able to ask the right questions, being curious, critical and evidence-based. At the moment, it seems like government and policy is in dire need of more evidence and critical thinking rather than less, suggesting this is the perfect moment for scientists to take a chance on policy and politics. In the spirit of compromise, for policymakers to accept scientific advice, scientists will need to be less closed off and elitist about their profession (or vocation, if you will) and looking at politics with disdain. Scientists see themselves as seekers of truth and knowledge — as people who are trying to understand the world and make it a better place. Politicians, lobbyists and policymakers, so it goes, are only in it for money, power and influence. This is, however, a gross and unhelpful oversimplification. Policy affects all of us; governing, advising and creating policies for government and opposition, is in many respects not dissimilar to science. It requires evidence and a critical eye. Contrary to what we might initially believe, lots of policymakers and lobbyists do their best to influence government policy for the greater good and not just for their own benefit. That does not negate the fact that we’re living in tumultuous time where politicians pontificate about the public being tired of experts. This is very much the reason that I believe we need more scientists who are passionate about affecting policy and politics.

But to encourage more scientists to take the leap — whether that is to leave academia altogether and work for an NGO or the civil service in a full-time capacity, or simply advising government and policymakers on the side — we need to value the messy domain of politics more. Senior academics ought to encourage young postgraduate students who have an interest in policy and advocacy rather than stifle their interest to branch out. Many funding bodies are already seeing the value of giving postgraduate (PhD) students a taste of government, but we need supervisors to be just as keen for their students to explore public life. Furthermore, senior academics and group leaders could lead by example by participating in governments advisory committees and showing that dabbling in the domain of politics is not a bad thing. On their part, policymakers would do well to stop seeing scientists as out of touch elitists with no understanding of the workings of the real world: scientists ultimately are citizens who live in the real world too! In the end, if we’re going to affect change, and make the lush green Earth we have to share with each other a better place, we’ll have to take a more interdisciplinary approach. Scientists and policymakers need each other: that, in the end, is the only way forward.