Jean Georges, Executive Director of Alzheimer Europe together with Sirpa Pietikainen, Member of the European Parliament and Vice-Chair of the European Alzheimer’s Alliance, share their thoughts with LillyPadEU this World Alzheimer’s Month.
Q: Alzheimer’s disease poses a major public health challenge in Europe. Can you describe what it’s like to live with the condition?
Jean Georges: Alzheimer Europe works very closely with people who have been diagnosed with Alzheimer’s disease or other forms of dementia. To ensure we truly represent the views of people with dementia, at Alzheimer Europe we have set up a European Working Group comprised of 10 people with dementia from 10 different European countries. Their input into our work has been tremendous, and we have often been humbled by their energy, commitment and willingness to advocate on behalf of all people with dementia and stay true to their slogan “Nothing about us without us”.
Thanks to their contributions, we have been able to change the perceptions of the disease. Until recently, focus has been almost exclusively on the later stages of the disease. It is now recognised that with a timely diagnosis and the adequate post-diagnostic support, it is possible to “live well with dementia”.
Just as importantly, people with dementia have taught us that each person is different with individual needs. A “one size fits all” approach will not be appropriate. Instead, we need to identify person-centred approaches which promote the autonomy and dignity of each individual.
Q: From your perspective, what encouraging developments will help meet this public health challenge?
Jean Georges: When I started working for Alzheimer Europe almost 20 years ago, there was little recognition that dementia constituted a public health challenge. Thanks to the campaigning of national Alzheimer’s associations and individual people with dementia and carers, this has now completely changed.
The number of European countries recognising dementia as a priority and developing national dementia strategies or Alzheimer’s plans continues to grow steadily and we currently have such plans in Austria, Belgium, the Czech Republic, Finland, France, Greece, Ireland, Italy, Luxembourg, Malta, the Netherlands, Norway, Slovenia and the United Kingdom (with separate plans for England, Northern Ireland, Scotland and Wales). This public recognition needs to go hand in hand with greater awareness campaigns, the promotion of timely diagnosis, the development of post-diagnostic support, the improvement of care services and the continued and increased funding of dementia research.
Q: From a policymaker perspective, what motivates you to bring the challenge of Alzheimer’s disease to front and centre at the European Parliament?
Sirpa Pietikäinen: My mother has had a memory-disabling disease since late 1990. I am happy that she is still with me at home. This has been possible with the generous help of external caretakers. I find it very important that she can live as normal life as possible, as she has an equal right to enjoy everyday pleasures in her own home: her cats, the breeze and the rays of sunshine in the courtyard.
From a policy perspective, European and national plans to tackle memory-disabling diseases are key. Having them fully implemented and monitored in the whole of Europe would improve the lives of people living with these diseases. More targeted legislation at EU-level also has potential to improve the everyday life of people with memory diseases, such as better accessibility requirements for products and services.
Q: Can you give us an example, at European level or from a Member State, of a great initiative that will help to be “Alzheimer’s ready” for the future?
Jean Georges: As the director of Alzheimer Europe, I would like to focus on European level initiatives and would like to single out two key developments. On the one hand, European wide research continues to grow with Horizon2020, the Innovative Medicines Initiative and the Joint Programme for Neurodegenerative Diseases research (JPND), all actively supporting key dementia research projects and demonstrating that the European Union has fully understood that dementia cannot be “solved” by one single country.
On the other hand, ministries of health are working together in a Joint Action on Dementia, in order to learn from one another and identify and exchange good practices on policy initiatives in the fields of timely diagnosis, care coordination, residential care and dementia-friendly communities.
Q: What key thought would you like to leave in readers’ minds on the occasion of World Alzheimer’s Month?
Jean Georges: Looking at the increased recognition of dementia as a public health and research priority, I am truly hopeful for the future. We need to continue our research efforts in the hope of better treating and eventually curing or preventing Alzheimer’s disease, whilst at the same time providing concrete answers, solutions and care approaches to the people currently living with the disease and their carers.
In my opinion, our motto of “Care today, cure tomorrow” best captures this necessary holistic approach to dementia care and research.