Paola Barbarino, Chief Executive Officer at Alzheimer’s Disease International (ADI), talks to IFPMA about changing attitudes and perceptions surrounding dementia and Alzheimer’s. 

Is mental health getting enough attention in the UHC discussions and what are your hopes for the upcoming UN High Level Meeting on UHC?

Following on from the High-Level Meeting on Non-Communicable Diseases in 2018, we were both heartened and frustrated. Heartened by the increased profile of Mental Health, in the expanded 5 x 5 format, but frustrated that dementia did not receive the specific attention it needs as one of the biggest global health and care challenges we face. Obviously, there is a life course approach to NCDs but with a particular focus and emphasis on early life interventions. Although such interventions are pertinent for dementia risk reduction messaging, they are not all there is to dementia.

It is a similar challenge with UHC discussions. Mental health is receiving a higher profile, but our challenge is to make sure that dementia is fully recognised within that discussion. A key area, and you can also argue a key barrier to UHC, is how to accommodate long term health costs into global health care systems; systems that are often still struggling with other immediate and acute needs. Dementia is already a US$ 1trillion a year cost, a figure set to double, and our challenge is to help governments and policy makers see the benefits and savings, rather than the costs, of implementing plans, from risk reduction to timely diagnosis, post diagnostic and late stage support.

With life expectancy on the rise worldwide, all countries across the world will face increasing pressures on health systems and ensuring adequate long-term care for older people. How do health systems ensure that healthy ageing across the life course is promoted and how do we best address the common misconception that dementia and conditions such as Alzheimer’s are simply a “thing of old age”?

We need energy and focus at governmental level to heighten the profile of healthy ageing as the voluntary sector can only do so much. The healthy ageing message seems to be getting through in higher income countries but there is still some confusion and misconception, including that Alzheimer’s and dementia is something you get when you are old rather than a disease with risk factors that can be mitigated. With the global population of over 60s surpassing 1 billion, a figure set to double, it is vital we correct this misconception. The level of questioning during one of our recent webinars on risk reduction highlighted just how much we need to do in terms of education and awareness raising.

At ADI, we are being very proactive and leading by example. For example we are about to launch a large scale campaign in September, during our World Alzheimers’ Month, with the Pan-American Health Organization (PAHO), specifically focusing on encouraging an open discussion about dementia between family and healthcare practitioners and aiming at increasing the rates of diagnosis -and post diagnostic support in middle and South America. The campaign has a top down approach -with PAHO encouraging governments- as well as a bottom up approach, with our members stirring their grassroot constituencies.

Japan has taken a leadership role in prioritizing dementia within its national health strategy and the country hosted the G20 summit in June where dementia was included in the health ministers’ agenda. What can other countries learn from Japan?

ADI worked extremely hard through the C20 mechanism to capitalise on the opportunity offered by Japan’s interest in healthy ageing and ensure dementia (and NCDs) also formed part of the final declaration in the G20. We found fertile ground there as Japan is one of the leading countries in the world in acknowledging the dementia crisis and is coming up with innovative solutions some of which have been successfully translated in the rest of the world, like in the case of Dementia Friendly communities.

Japan has also started talking before anyone else of incentivising private insurance mechanisms to finance the growth of care needs in its population.  But some of that thinking has not been shared widely yet.  We do hope this will be the case now that there is a firm commitment of the country to lead the world in this area. This year we have been delighted to see renewed interest and energy from Japan in sharing and communicating their innovative approaches. This is what ADI is also about, encouraging countries to share best practice and innovate.

ADI is currently undertaking the world’s largest survey on people’s attitudes around dementia, which will form the basis for the World Alzheimer Report 2019. Why is it important to understand attitudes?

One of our most ambitious objectives is to increase awareness of dementia and reduce stigma. Looking at how other diseases tackled this objective it has become clear that the absence of a cure is a serious barrier. But whilst we wait for a cure, which we always hope may be around the corner, there is so much that can be done to improve the life of those living with the disease and their families. We need to understand globally how strong the perceptions and attitudes to dementia are, so we know the scale of our challenge. The survey was addressed to people with dementia, family carers, healthcare practitioners and the general public. The almost 70,000 replies we received will make this the largest survey ever done on dementia and allow us to shape our strategy both globally and nationally for the next 5 years. This in turn will help us build a framework to strengthen the movement of people demanding more policy making around dementia healthcare and more investment in the disease.

What is your view on the innovation challenges in Alzheimer’s disease?

Innovation is key in Alzheimer’s disease in so many ways. We need innovation in research, in care, in healthcare financing, in support mechanisms, the built environment, you name it. Since 2017, we have changed our course of action in this area and proactively seek out innovative companies and ideas in order to present them to a larger public and to encourage more people to take this path. In the area of pharmaceutical research, there are companies working on promising compounds, but even if we found a solution to one path or stage of the disease, the mechanism of the disease is so complex that probably it would not address the case of every single person. With that in mind we need people to think out of the box about innovative and different solutions.

One of our main concerns is the lack of young researchers entering this career path. We continue to call for governments to devote at least 1% of the societal cost of the disease to Alzheimers and dementia. There is undoubtedly a need for funding, last year’s World Alzheimer’s Report (www.alz.co.uk/research/world-report-2018) pointed out that for every 12 cancer studies there is 1 on neurocognitive diseases (not just dementia!). This is way too low. We were disheartened to see the EU squandering a golden opportunity to focus on dementia as their next mission through Horizon Europe and gave some robust feedback. We hope they will reconsider. If the bigger funders desert us, we will never find a solution. But a solution is within our grasp and we must continue to look for it with all our might. 52 million people live with the disease now. The number is growing every day. We owe it to them, and we owe it to their families.

Author

• Paola Barbarino