Reflections on the 25th Alzheimer Europe Conference
Susan H. McFadden, Ph.D.
Fox Valley Memory Project (www.foxvalleymemoryproject.org)
This year’s meeting of Alzheimer Europe in Ljubljana, Slovenia, had the theme of “Putting Strategies and Research into Practice.” This is a common plea around the world regardless of whether researchers are studying snails or stars or Slovenian bee-keeping.[i] How do you connect science and what some call the “real world”? Unfortunately, because too many people are ignorant (or fearful) of science, this question often ends up artificially constraining science, or worse, shaping it for political purposes.[ii]
When I was in college in the 60s, a lot of psychologists distinguished between basic and applied research and then squabbled about which was more valuable (meaning which should get the most monetary support). It’s really a false distinction, because if you’re willing to take the long view of the pursuit of knowledge, you can never be sure whether so-called “basic research” will end up producing important applications. And even if it doesn’t, satisfying human curiosity about the world can be a significant end in itself.
So what does all this have to do with Alzheimer’s and other forms of dementia? In the 25 years since the founding of Alzheimer Europe, research on various biomedical treatments has failed to produce safe products to prevent or forestall dementia symptoms. A few drugs are commonly used today, mostly in the early stages of Alzheimer’s disease, but none can stop or reverse it. The same is true for the many other types of dementia. Nevertheless, through very expensive failures, and dashed hopes, much has been learned and some of this research has successfully been “translated” into practice. (“Translational research” is a popular 21st century label.) In addition to research on diagnostic methods and biomedical treatments, I’d include research on psychosocial interventions to improve life quality in people with the diagnosis and their care partners, research on arts programs, research on environmental design, etc. All of this research has produced important improvements in the lives of people living with dementia.
In this essay, I describe a small portion of the research presented at the Alzheimer Europe conference and organize it around four key ideas:
· Each person with dementia is unique: “If you’ve met one person with dementia, you’ve met one person with dementia” (Kitwood, 1997)
· Cooperation among European nations promises tremendous opportunity for progress in research, policy, and practice: “When was ever honey made with one bee in a hive?” (Thomas Hood, 1799-1845)
· We must mitigate social isolation among people living with dementia: “I get by with a little help from my friends” (John Lennon/Paul McCartney)
· People with dementia should be part of the research process from the beginning, as well as part of the process of translating the research into policy and practice: “Nothing about us without us” (slogan from the disability rights movement)
As stated by the first plenary speaker of the conference, Bengt Winblad (Sweden), the way forward appears to be better diagnosis of individual pathologies and therefore better treatment that is individualized. In other words, one size does not fit all when it comes to dementia treatment (or many other diseases, for that matter). Florence Pasquier (France) followed Winblad and noted the variations in how people receive the dementia diagnosis. Some worry about their memory and quickly seek testing; others delay as long as possible. Environments vary, too, with some families being supportive and others resisting any discussion of a possible neurocognitive disorder. In addition, although we are learning more every day about various biomarkers of the dementias, we also need to pay attention to genetic differences and “way of life” variables that shape the potential for developing a form of dementia. As Simon Lovestone (UK) argued, we need more focus on secondary prevention in the time before people develop symptoms.
Lovestone’s lecture offered an inspiring review of the cooperation among European countries that he says are leading the field in collaboration for translational research. In this era of “big data,” the Europeans are combining the findings of a number of longitudinal studies conducted in various countries in order to repurpose them to benefit dementia research. EPAD (European Prevention of Alzheimer’s Dementia) is a public/private partnership that will adopt an adaptive approach to clinical trials of new medications with 24,000 people all across Europe.
Geoff Higgins, also from the UK, picked up on these themes by describing the European Union Joint Action on Dementia (2015-2018) which has the goal of improving the situation of people with dementia, family care partners, and paid caregivers. They intend to identify and test evidence-based approaches to diagnosis and post-diagnostic support. By 2018, they will release a “toolbox” for primary care physicians that will include the recommendation (already implemented in Scotland) that everyone who gets a dementia diagnosis have a follow-up a year later to offer support and suggestions for continuing to live well.
Jeremy Hughes (UK) gave a rousing explanation of the third theme woven throughout the conference: we all need friends, especially when we are journeying into dementia. He talked about the Dementia Friends campaign in the UK that has the impressive goal of changing the way the whole nation acts and thinks about dementia. The Dementia Friends campaign is a volunteer-led social action movement in which trained “dementia champions” organize and train people to be “dementia friends” in a 40 minute awareness session that gives basic information about dementia, engages people with a practical exercise, and ends with participants making a commitment to take action. Importantly, the Dementia Friends campaign wants to make kindness and patience toward people with dementia a routine part of everyday life, including life in a wide variety of workplaces. One dementia friend pledged after his training that he would “be patient with my neighbor who is living with dementia, and remember to introduce myself to her and remind her that I’m from next door.”
Compulsive note-taker that I am, I have 32 pages of yellow-lined paper full of my jottings from the conference. I attended all the plenary sessions, but had to be selective about workshops so there is much that I missed. However, the last theme I want to note was evident throughout the conference, both in the plenaries and the workshops. This one mirrors the intent of a slogan originating with the disability-rights movement: “Nothing about us without us.” There were many people participating in the conference who have dementia. Nine are members of the European Working Group of Alzheimer Europe, but many more than nine attended, and this doesn’t include the number of care partners who accompanied them. There are Working Groups like this forming in several countries as well as in local jurisdictions. Members of the European working group gave plenary lectures, introduced workshop panelists, participated in workshops, offered hospitality to the rest of us, etc.
Philly Hare (UK) described the work of members of DEEP (Dementia Engagement and Empowerment Project: http://dementiavoices.org.uk/) which is made up of about 60 local groups of people with dementia all over the UK. Here are some of the ways they help to make their communities dementia-friendly:
· They help with care staff trainings
· They assist funders in assessing grants for dementia-related projects
· They audit shops to make sure they are dementia-friendly
· They produce films, plays, and photo exhibits demonstrating their vital involvements in their communities
· They blog. They tweet. They get the word out that “we’re still here!”
· They collaborate with local media on stories about life with dementia
· They help write guidelines for care
Hare described their feelings of urgency about this work. They know they are living with a progressive condition, and they feel the need to do things now to secure relationships and resources for the coming years. I do not know of any organized groups in the US doing work like this and I think it’s time we borrowed yet another good idea from our friends “across the pond.”
[i] Slovenians have a rich, proud tradition of apiculture (bee-keeping) that combines science, art, and delicious tastes. We visited a shop with over 20 different varieties of honey.
[ii] For example, the governor of Wisconsin recently tried to end a century-old commitment of the state University system to what was traditionally valued as the “Wisconsin idea,” meaning that researchers would educate citizens about their scientific work and through openness to citizen input, they would make valuable contributions to improve quality of life in the state. Instead, the governor wanted to replace the “pursuit of truth” with training for specific jobs. Fortunately, the people fought back on this one and the Wisconsin idea escaped the political axe.