Changing the Future of All Minds

by Susan Pascal

Lenny Shallcross is the director of the World Dementia Council. Prior to that, he was head of community engagement, leading programs across the UK to establish Dementia Friendly Communities, which includes the Dementia Friends program. Dementia Friends, copied in over 40 countries (including the U.S.), is dedicated to creating a more dementia-friendly society.

Shallcross sent us his thoughts from his home in London.

1. Currently, what is the most pressing policy issue for people with Alzheimer’s and other forms of dementia that you feel must be addressed worldwide?

There’s no single issue. Today almost 50 million people in the world have dementia – more than half of them women. The experience of each individual, their caregivers, their family is different. But what unites every person living with dementia today is that more than a hundred years after Alois Alzheimer’s gave his famous lecture on “an unusual disease of the cerebral cortex,” dementia remains a disease that cannot be prevented or effectively treated.

Over recent months we have seen high-profile clinical trial failures. It is easy to be downhearted. But we are making progress. We understand more than ever before about the biology of the brain and the science of Alzheimer’s and other dementias, but governments, not-for-profits, foundations, and others need to continue to invest in research. Every dollar counts. Research is advancing our understanding of the science, and from that, we will discover treatments.

But research isn’t just about developing treatments. The best cure for dementia is not getting it in the first place. One of the most exciting areas of research is looking at how we can reduce the risk of developing dementia. There is a growing body of evidence that suggests what is good for the heart is good for the head. Studies suggest that eating well, not smoking, and regular exercise reduces the chance of developing dementia, as does childhood education. This may explain why the number of people developing dementia in high-income countries appears to be slightly lower than expected.

One promising area of research is whether aggressively lowering blood pressure in older people or lifestyle interventions such as exercise later in life reduces the incidence of dementia. We need to be led by the evidence and that’s why conducting research is so important.

2. You have been involved with Dementia Friends. Tell us a bit about the program and why others like this are needed?

Dementia Friends began as an initiative in Japan – called Ninchisho Supporter Caravan – and was taken up by the Alzheimer’s Society in the UK. It is now copied by more than 40 countries around the world, including in the United States. The program aims to improve the lives of people with dementia through raising awareness, increasing understanding and supporting people to participate in their community.

Just consider the 50 million people living today with dementia. Where do they live? Not in care homes, nor in hospitals. Overwhelmingly people with dementia – in high-income as well as low-income countries – live in the community. They are our neighbors and our friends. But too often it is not seen like that. Dementia has been a disease living in the shadows. But today there are more people with dementia and their families speaking out: telling their story and explaining what needs to change.

What is important is that we can demonstrate the impact of programs that aim to support people to live well in the community. There has been a huge increase around the world of such programs – not just Dementia Friends. Some have been grassroots initiatives, some led by not-for-profits, some by government and in some cases a combination of all three. These dementia-friendly programs have focused on such things as providing education and raising awareness among businesses, healthcare providers, first responders, and others.

The World Dementia Council is leading an international network of organizations to investigate and report on the global evidence base for the delivery of meaningful Dementia Friendly Initiatives (DFIs). The evidence gathering project is running throughout 2019 and will culminate in a report to be published in early 2020.

3. Do you see things changing, albeit slowly, for the better with regards to dementia-friendly communities, ie. restaurants, housing, etc?

Yes, you do see improvements. The story is the same. In research, we are making progress. There is more and better care available. And communities are increasingly including people with dementia. But in each of these cases, we need to go further and faster. Too many people with dementia, and their caregivers say they lose touch with friends and family after a diagnosis, and they stop things like hobbies. It isn’t surprising that people feel socially isolated.

Globally, the world is aging. We tend to think of Europe, North America and Japan as aging societies. But today more than two-thirds of the population over 60 live in developing countries. Over the next decade or so the proportion of the population over 60 will increase by 70% in Latin America and 65% in Asia. The aging society means by 2050, the number of people living with dementia will more than triple.

Including someone in society isn’t a ‘nice thing to do,’ or an optional add on. Someone with dementia has as much right to participate in society as any other person. And to participate means being able to go to shops and restaurants. It means ensuring there is appropriate housing. It means you can participate in society on your terms.

Given the challenges of an aging society and given the big increases in numbers of people living with dementia in the years ahead, we need to understand this right now.

For more information about Dementia Friends USA, click here.

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