What is the focus of the Flanders Centre of Expertise on Dementia and its main challenge?

We’ve got two main challenges. One is making sure that persons with dementia and their family caregivers receive the best care that’s possible. Secondly, try to reduce the number of persons with dementia in the future with prevention campaigns. Finding drugs that help prevent or cure Alzheimer’s and dementia is also an important challenge that we care about, but that kind of research is out of our area of expertise.

Our focus is on improving the quality of life of people with dementia and their environment.  We do so by supporting policy development, improving the perception and representation of dementia in media and society, training care professional staff, volunteers, and family caregivers, translating research done internationally to the Flemish dementia care, and gathering and providing questions that need to be answered by and to researchers.

Dementia is well known by many people because of the increasing number of people with dementia. We try to make sure that there is a nuanced, unbiased public image of dementia. It used to be that media outlets wrote about dementia as if it was the end of life, the final stage, and they always used photographs and headings focused on those last weeks of life as if dementia is just that. We try to stress that after diagnosis you still have an average of eight years of life expectancy and that there can still be plenty of quality of life in those eight years.

What are the main challenges for dementia prevention and early diagnosis?

Clinically, the changes in the brain can start about 20 years before diagnosis, but at that moment they are hard to detect (dementia can only be detected this early in a research environment). Dementia is a slow-motion disease that changes the brain. Today there’s no cure, so we have to focus on providing good care to people with dementia, that’s what we work for, but also work on lifestyle changes.

There is a lot of research nowadays that confirms that a brain-healthy lifestyle at middle age can reduce the risk of dementia at a late age. The Lancet published a report last summer that said that about 40% of future cases of dementia can be avoided if people adopt a brain-healthy lifestyle in middle age. That’s research that’s been building up over the past 10 years, which is gaining stronger evidence. We created the Sanimemorix campaign in 2018-2019 to raise awareness about this basket of healthy living elements that are also good for our hearts.

The keys to this healthy lifestyle are:

• Staying physically active
• Exercising regularly
• Eating healthy food
• Lots of fruits and vegetables
• Not sitting down for too long
• Drinking less alcohol

Specific to improving your memory are:

• Staying socially active
• Keeping your brain active in a challenging way
• Staying curious
• Keeping long term stable relationships

You have to understand that dementia is not like lung cancer. 90% of lung cancers are related to smoking. You’ve got a very high correlation between one cause and one result. With dementia, it’s a basket of lifestyle elements. And it’s also not just one disease: it’s Alzheimer’s, but it can also be Lewy Body, frontotemporal, vascular dementia, and more.

So we’ve boiled our recommendations down to three messages: what’s good for the hearts is good for the brain; be socially active and be cognitively active.

The quality of care matters a lot. We are working together with medical doctors, pharmacists, and other professionals working in hospitals, residential care, and home care. All these target groups are in our scope. One of the things we do now is to have some reference persons on dementia in the different nursing homes in the whole of Flanders. We are educating nursing staff, occupational therapists, social workers, etc. in Flanders to enhance the quality of care in dementia care. And we have also developed a reference framework on dementia so that professional organizations can use it to change their way of working in a more personalized and person-centered way. Our center promotes a timely diagnosis and wrote together with the University of Leuven an evidence-based guideline for general practitioners in the function of timely recognition of the first symptoms and the role of the general practitioner in the follow-up of the diagnosis by the specialist (geriatrician, neurologist, neuro-psychiatrist). 

How can a business model around prevention work?

You can make a comparison with high blood pressure. High Blood Pressure is bad for your health, but there’s a solution to it. The solution has three components: 

• Firsts is a very cheap and painless diagnosis. You go to your general practitioner (GP), he measures your blood pressure, and it doesn’t hurt you. 
• Seconds is a cheap treatment. You get medicines, drugs prescribed, you take them daily. Cheap and easy again. 
• And the third thing is there are no side effects of those drugs. 

If you translate these to dementia, you get into problems because there’s no cheap early diagnosis for those 20 years that the brain gets damaged. With the current knowledge and instruments, you can only diagnose dementia when it’s far too late. 

We need an instrument for early diagnosis through a blood test, and progress is being made with early detection blood tests, but it’s still within research environments and not in a medical clinical environment. The second element you would need is the equivalent of high blood pressure drugs, a cheap medicine that you can give to persons with an early diagnosis of dementia, but it’s not available. And the third element would be to have drugs without side effects, but if you’ve got no drugs available, it’s impossible to monitor for side effects.

What GPs can already do is check if their patients are doing what’s good for their hearts and brains and recommend their patients to include those elements in their lifestyle. 

A good example is what our colleagues in the Netherlands did with the My Brain Coach app to learn more about how healthy your brain is and what you can do to keep your brain healthy or make it even healthier.

Who are the potential partners with whom you could work to make it happen?

We need to increase awareness about the link between lifestyle and risks of dementia. And we need to build working links between organizations like us and organizations like Gezond Leven and Alzheimer Liga Vlaanderen. We hope that the way we work with organizations like Gezond Leven is replicated and multiplied in other countries. 

Clearly, developing early cheap detection tests is the first challenge for pharmaceutical research, followed by developing medicines. In the meantime, we welcome them as partners when and where they can contribute to good dementia care and primary prevention.

About Flanders Centre of Expertise on Dementia

The Flanders Centre of Expertise on Dementia and the regional centres of expertise are based on a person-centered care vision with respect for individuals’ life stories, needs, and preferences. They support policy development, improve the perception and representation of dementia in the media, train care home staff and family caregivers, translate research done internationally to the Flemish situation, and gather and provide questions that need to be answered by Flemish researchers.

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