Day One concluded with the annual Gala, a dinner and dance at an excellent traditional Austrian restaurant located in a former monastery. It was attached to a large wine cellar (where the dancing took place) and, for some reason, a hat museum. Wine flowed freely and the evening ran late (note photo of partying dementia researchers and practitioners below), an unfortunate combination for those scheduled to present first thing in the morning, Susan among them.
After another wonderful European breakfast buffet, we headed off to more parallel sessions. Susan was first to present at a session on perceptions of dementia. She had the misfortune of doing this in the plenary hall where gremlins invaded the computer system two minutes after she began her talk on applying the work of Viennese psychotherapist Viktor Frankl to the experience of dementia. After the slides were restored, she had to hurry through her presentation, but all is not lost since she intends to write a paper explaining her thinking about this topic.
Meanwhile, John was attending a lively session on involving people with dementia in decisions about practices and policies that affect their lives. One presenter, our friend Eleanor Edmond, from Ireland, threw out her prepared talk and instead presented video she shot the previous day demonstrating how ill-suited the conference venue was for persons living with dementia. She had accompanied several individuals with the diagnosis to the meeting and immediately noted (as we all did) the disorienting hotel interior design based on a 1970s disco theme with mirrors everywhere (including the ceiling of the lobby and the pillars of a long hall leading past the bar). This was an excellent example of how design that doesn’t work for people with dementia also doesn’t work for people who do not have dementia. Susan barely avoided crashing into a mirrored pillar and nearly tripped almost every time she stepped across a metal plate separating two halls that presented an Escher-like illusion: do you step up or do you step down? Another note about this odd venue just outside Vienna: it was attached to a huge glass pyramid that plays host to musical events that draw party-goers from across Europe. On our final night, it featured an all-night Rave attended by 6,000 people, an odd accompaniment to a dementia conference.
After another coffee break (and more Austrian pastries), Susan attended a session on “dementia-friendly communities,” the theme of next year’s Alzheimer Europe conference (in Malta!) and the core organizing principle for the work we’re presently doing in the Fox Valley. Suffice to say, the Europeans are way ahead of the Americans in both practice and policy that make communities more welcoming to people living with dementia and their care partners. She took a lot of notes on the presentations and will be following up by contacting the speakers and reading their manuals and research reports.
As readers may have noticed by now, we were fed very well at this conference. Lunch consisted of another sumptuous buffet and of course, more pastries. The afternoon was given over to plenary sessions. The first addressed changing the social and care aspects of practice. We marveled at the work being done to coordinate European countries in order to address both practice and research. For example, many countries are cooperating to explore ways to support quality of life through technology designed to enhance social interaction. They are also collaborating to improve data on dementia prevalence and to encourage early diagnosis. Importantly, the misuse of anti-psychotics in the population of persons with dementia is a major focus of this multi-country work. Together, they are proposing a “toolbox” for limiting anti-psychotic prescriptions to control behavior and psychological disturbances.
Bob Woods, of the UK, elaborated on this theme by describing the European Joint Program on Neurodegenerative disease (JPND). European countries are coordinating research on psychosocial interventions, programs that are usually categorized (pejoratively, in our opinion) as “non-pharmacological” in the US. Why should drug interventions be privileged over the provision of cognitive stimulation, creative engagement, physical exercise, and social interaction? One reason commonly given is that we have more “evidence” for the efficacy of drugs since the research on psychosocial interventions (which receives far less funding) often involves small samples, weak design, and poorly defined measures that are nearly impossible to compare across studies. Woods participates in a group of researchers from a number of countries (INTERDEM: Intervention in Dementia) that aims to redress these problems by raising the quality of psychosocial research and justifying the use of designs that do not involve randomized control trials (RCTs).
The last session of the day (and of the conference) presented us with an array of talks, ranging from an intimate, first person account of living with dementia to a well-crafted, philosophical reflection on the ethical implications of technologies designed for people with dementia and their carers. Helga Rohra, newly elected as the chair of the Alzheimer Europe Dementia Working Group, was diagnosed with Lewy Body disease several years ago. She attends many conferences like this one to tell her story and to urge policy makers, researchers, and practitioners always to remember the world-wide plea of persons with disabilities: “Nothing about us without us.”
Persons with disabilities must always be afforded full citizenship—politically, socially, and psychologically. They must not be treated as passive objects of paternalistic, well-intentioned care (or worse). Helga is an excellent example of the importance of people with dementia having meaningful social roles. She reminded us that the plea for early diagnosis will result in more people given the diagnostic label of “Alzheimer’s disease,” “Lewy Body disease,” “Fronto-temporal dementia,” etc., who are able, willing, and determined to speak up for themselves. In coming years, we may witness people with dementia forming a movement like “Act Up,” which grew out of the political activism of people with AIDS. They will not fade quietly into a socially defined role of invisible victim.
Cees Hertogh of the Netherlands followed Helga’s personal story with a thought-provoking analysis of assistive technologies designed to ensure safety of persons with dementia compared with surveillance (i.e., satellite tracking of those prone to wander) technologies designed to control behaviors. He noted that assistive technologies can also control behavior and surveillance might give people freedom (albeit within a limited domain). His take-home point was that the ethics discussion usually comes too late in the development of new technologies. We get all excited about the whiz-bang technology and fail to ask the important questions about how it might affect people’s autonomy and ability to make choices about their lives. Also, most of the time people who actually have dementia are not consulted when the technology is being designed. This goes back to the theme of “nothing about us without us.” Hertogh ended with an important and too rarely asked question: “How can we guide technological development so it contributes to a good life for and with others in good caring relationships?”
The last two talks continued the theme of exploring ethical issues, with one reviewing Alzheimer Europe’s ethical recommendations on dementia research and the other describing Austrian approaches to guardianships and resident advocacy. In all, this last session provided a rich array of ideas, demonstrating the intimate connection between personal experiences and the wider world of practice and policy.
The final event on the conference’s agenda showcased a brief film enticing the audience to consider attending next year’s conference in Malta. To be honest, Malta has never been on our mental maps, but the opportunity to gather on a beautiful island in the Mediterranean Sea with wonderful, dedicated people from all over the world to talk about creating dementia-friendly communities is very tempting.