Dementia Friendly Communities: The Fox Valley Memory Project

Note: This article originally appeared on the Alzheimer's Reading Room, a site well worth visiting.

My wife, Susan, and I have spent the last three years exploring the ways in which other countries are providing services and hospitality to persons with progressive memory loss and their care partners.  Two years ago we toured England, visiting a number of Memory Cafés.  We have also attended several conferences of Alzheimer’s Europe, learning about best practices in other countries.  Next year’s conference, hosted in Malta, will focus on Dementia Friendly Communities, an initiative already well-established in the U.K, and several other nations.  We have been working with others in our region of northeast Wisconsin to create such a dementia friendly community through the Fox Valley Memory Project.

We developed the initiative slowly and carefully, building community awareness and support and establishing collaborative relationships with existing organizations, including the Alzheimer’s Association, Lutheran Social Services, Goodwill Industries, our county Aging and Disability Resource Center, and others.  We sought and received a three-year grant from the Community Foundation for the Fox Valley Region and a two-year grant from the Helen Bader Foundation.  Aware of the important role that the Rotary Club has played in developing Memory Cafés in the U.K., we also sought and received support from the Appleton Downtown Rotary Club.  With funding in place, we hired a program director and launched our first initiative, introducing Memory Cafés to our community.

We began with two locations, each hosting two meetings per month.  A third location will be added in February, and a fourth later in the year.  We are currently discussing a fifth that would be designed for persons diagnosed at a younger age. 

Participation in the Memory Cafés has already exceeded our expectations—our most recent Café included six volunteers (trained by our program director) and 26 participants (persons with memory loss and care partners), as well as a singing group that came to entertain.  Our gatherings are joyous experiences for participants and volunteers alike.  As has been noted here before, Memory Cafés are neither expensive nor difficult to operate, and they make a profound difference in the quality of life for those who participate.  Carole Larkin at Third Age Services has compiled a list of the growing number of Memory Cafés in the U.S., as well as offering helping guidance for establishing a Café.

In February we will launch our second initiative, the Care Partners Welcome Center.  Located in the Thompson Community Center (where our program director has her office and one of our Memory Cafés takes place), it will offer comprehensive information, services and support to persons providing care for someone living with progressive loss of memory or cognitive function.  Among other services we hope to provide at the Center are support groups facilitated by the Alzheimer’s Association while the Memory Project provides respite care.

We have also begun a research initiative, beginning with a community survey to measure knowledge and attitudes about dementia.

Later in the year we plan to open an Assessment Center committed to early and accurate diagnosis of Alzheimer’s and other dementias.  Our region, like most others, is terribly under-resourced in this area, with typical waiting time for assessment running six months or longer.  We will employ a new model of assessment, one that begins not in a medical facility but with a home visit by a case manager, a model designed to minimize fear and anxiety.  The Center will initially be housed in the Fox Valley Family Medicine Residency Program, but our dream is to relocate to a free-standing facility with a home-like environment.

Goodwill Industries of North Central Wisconsin will take the lead role in an initiative to provide support to persons diagnosed while still in the workplace, offering retraining where it is possible to maintain employment and other resources, including financial counseling, where it is not.  With the number of persons diagnosed at an earlier age expected to grow significantly in coming years, it will be increasingly important to educate employers and support these employees.

We are committed to ongoing community education.  In April we will host an event feature Dr. Marc Agronin, author of How We Age, and Dr. Abhilash Desai, acclaimed geriatric psychiatrist who formerly practiced in our region.  We will offer an evening presentation open to the community and a full-day of in-service workshops for physicians and nurse practitioners. 

Finally, inspired by the Camelford Dementia Action Alliance in Cornwall, we hope to encourage local businesses and organizations to declare themselves dementia friendly, opening the fullness of life in community to those living with memory loss, their care partners and friends.

As the saying has it, “none of this is rocket science.”  Any community can launch similar initiatives.  Our hope is to do it well enough that it will inspire others, in and beyond Wisconsin, to visit us and begin their own efforts to build dementia friendly communities.

Further Reflections on Alzheimer Europe

We are sitting in the Frankfort airport, waiting for our return flight to the US after several delightful days of exploring Vienna when the conference ended.  We continue to ponder not just the content of this year’s conference, but what it is about Alzheimer Europe meeting that makes us so eager to participate at our own (considerable) expense. 

Above all, we participate because we learn so much from our European colleagues and friends.  We appreciate their holistic understanding of dementia and the ways it can be addressed (through public policy, person-centered care, focus on creating dementia-friendly communities, psychosocial programs, high quality research on those programs, etc.).  Focusing primarily on limiting “cost and liability” (words used by one speaker to describe what shapes US dementia policies and practices) constrains creative thinking about how people might live well with dementia.

We believe the ideas and inspiration we bring back can help our Fox Valley Memory Project enact the vision of dementia-friendly communities.  However, if limiting cost and liability remain the primary goals of US policy and practice, our local project will remain an anomaly in a society that continues to medicalize and individualize dementia, isolating and stigmatizing persons with the diagnosis and those who care for them.  We anticipate evidence will show that emerging models of dementia-friendly communities are far more cost effective—and healthier, for individuals and societies—than our current, unsustainable approach which provides expensive, high quality care for a small proportion (usually wealthier persons) of those affected by dementia.

At the Alzheimer Europe gathering, we meet people committed to breaking down the walls that too often divide pharmacological research from psychosocial research, researchers from practitioners and policy makers, and—most importantly—exclude persons living with dementia from the conversation about what will best meet their needs and enhance the quality of their lives.  Fortunately, we see a similar commitment to breaking these barriers growing in the US.  We understand that our European colleagues are also constrained by worldwide economic challenges, but again, efforts to create dementia-friendly communities need not exert high demand on national economies.

Importantly, our European friends do not believe that the challenges presented by an aging population and the growing number of persons affected by dementia can be effectively addressed by any one nation alone.  Cooperative efforts across national borders are essential to forming policies and creating new practices that will best serve not only the persons directly impacted, but the common good of society. 

The American mindset leans strongly towards “we will come up with the best solution without help from others.”  We do not know exactly why so few persons from the US attend the Alzheimer Europe (this year there were about 6 Americans, including the two of us).  Is it merely the name of the organization that discourages Americans from attending?  This doesn’t seem to preclude participation by people from India, China, Hong Kong, and Australia.  We recognize that the American Alzheimer’s Association is very much involved with the work of the organization, Alzheimer’s Disease International (ADI), and since we have never attended one of those meetings, we cannot draw fair comparisons.

Many of the meeting’s attendees work with one another on a regular basis through special-focus organizations, several of which were mentioned in our previous post.  They address dementia in many different settings and out of multiple disciplines, coming together in settings like Alzheimers Europe to affirm a common vision and purpose that ensures that their various efforts are not carried out in isolation from those working on other aspects of the challenge.

One reflection of this is seen in how persons listen attentively to those from other professions and disciplines in both plenaries and parallel sessions.  Moreover, persons with considerable experience and global reputations welcome, encourage and engage with researchers and practitioners just beginning to explore how they can make a contribution.  We were pleased to meet a number of young professionals and graduate students who view this meeting as an opportunity to gain mentoring, encouragement and inspiration.  They will have much to offer in the coming years.

It is a long way to travel for a relatively small conference that only runs two full days.  But it is more than worth the effort to spend time with these wonderful people, to draw ideas from them, and to be inspired to continue our own efforts.

Alzheimer Europe Day Two

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.  

Alzheimer Europe 2012, Day One

After a perfect travel day with all flights on time, luggage transferred from Appleton to Chicago to Zurich to Vienna, and a taxi waiting for us at the airport, we arrived at the Eventhotel Pyramide for the 22nd annual Alzheimer Europe conference in time to check out the hotel (yes, there really is a huge glass pyramid attached), rest a bit, and get ready for the opening reception. We grazed on “heavy hors d’oeuvres,” drank a bit of wine, and immediately started meeting interesting people, including a lovely young woman from the States who just completed her undergraduate studies and is on a 6 month solo world tour to learn about dementia care. It appeared to us that there were more young adults at the conference this year, although perhaps that’s merely a function of us being a year older.

The theme of the conference this year was “Changing perceptions, practice and policy” and the organizers did an excellent job of shaping plenary sessions around these topics. Almost immediately, a speaker spoke about the need to change perceptions of persons living with dementia: they’re not helpless old people and they can make decisions for themselves.

One outstanding feature of this conference is that it includes persons with dementia and their care partners; this year about 15 people with various dementia diagnoses attended. In all, there were more than 500 participants from 42 countries.

The Austrian Minister of Labor, Social Affairs, and Consumer Protection spoke to welcome the group to Austria. He noted that his office has responsibility for dementia-related programs and emphasized the significance of not placing these programs in the Ministry of Health. In Austria, all family carers have health insurance and they are eligible for up to 14 days per year of government paid respite care. Nurses go to homes to support family carers and there are a growing number of mobile service teams for persons with dementia. Of course, Americans reading this are wondering how all this family support is paid for. This question takes us directly to the policy question.

After the opening greetings, a panel of five persons discussed national dementia strategies in European countries. Some have been in place for several years; others are just about to be adopted; still others are several years from being finalized. Speakers emphasized the need to ensure that the focus remains on persons with dementia and their carers. Having a national strategy is a justice issue: all citizens should receive equal attention and care regardless of their cognitive ability.

Several panel members spoke about the need to raise awareness about dementia to encourage early diagnosis. Another way of saying this is that dementia can be reframed as a disease of middle age, not of old age. In other words, with early diagnosis, more people still in their 50s will be learning they have some form of dementia. Alistair Burns of the UK commented that you need a story about dementia in order to motivate politicians to support national strategies. He noted that for the next election of a Prime Minister in the UK, 50% of all eligible voters will be over age 50. That ought to get some politicians’ attention.

After this panel discussion of policy, and ample Austrian sweets at a coffee break, the conference launched into the first plenary session on the subject of changing medical and clinical practice. Bruno Dubois of France compared the old approach to diagnosis of Alzheimer’s disease (e.g., that it’s only definitive after death; diagnosis is described as “probable;” and people only get diagnosed when the disease is advanced). He urged a new definition: “an amnestic syndrome of the hippocampal type.” This is possible now because advances in brain imaging can show hippocampal shrinkage and cognitive tests can pinpoint the type of memory disorder a person is experiencing (differentiating, for example, memory problems due to depression, hippocampal damage, frontal lobe dysfunction, or garden variety normal aging).

Three more speakers followed Dubois, addressing issues of prevention, treatment, and brain imaging. Eric Larson of the USA suggested that we may have begun to see a decline in the rate of dementia through control of vascular risk factors and more education for younger cohorts. It remains to be seen if this is true, but his take-home point was that “senescence is not inevitable.” He wasn’t arguing for “anti-aging medicine” (thank goodness), but he was clearly stating that we have strong scientific evidence about risk factors that if addressed, can postpone the onset of dementia. These risk factors include physical inactivity, depression, smoking, mid-life hypertension, mid-life obesity, and diabetes. In other words, public health campaigns to improve health in midlife can affect the prevalence of dementia in old age. Once again, consider the radical change in perspective that would come from defining dementia as a disease of midlife.

After a sumptuous, delicious lunch buffet, we split up to attend parallel sessions featuring five to six short presentations. John attended one that further explored national strategies and then presented his work on spiritual care for the “deeply forgetful” (a term from the work of ethicist Stephen Post) at a session on psychosocial interventions. Susan learned about current thinking on legal and ethical issues related to dementia. Then, having agreed that they would go to different parallel sessions in order to learn as much as possible, she heard five speakers who discussed various types of arts programs. She was especially inspired by talks by two Australians, one of whom talked about the arts as a vehicle for “social citizenship,” a term just now coming into use in the dementia studies world. It reminds us of social, political, and cultural forces at play in the lives of persons living with dementia.

Preparing for Alzheimer Europe in Vienna

I fear this blog has been going through a fallow time, largely because of very busy schedules. The Fox Valley Memory Project of which we long dreamed is now up and running, with a program director aboard and the first two (of a projected five) Memory Cafes scheduled to open within the next six weeks. They will be followed in short order by the "Family Care Partners Welcome Center," a comprehensive resource center for persons caring for someone with the diagnosis of dementia, or simply concerned by early symptoms and uncertain where to turn for help. Research and evaluation will be structured into the Project from the very beginning - we want to demonstrate that these programs have real and meaningful value, hoping that other communities will emulate them. Already, friends and colleagues in the Madison area have opened one Memory Cafe with a second scheduled to start soon. The one that is operating already has 17 participants! You can see a report on it here. In the new year we will add the "workplace enrichment" phase of the project. Led by Goodwill Industries, it will aim to educate and equip employers to support employees who are diagnosed with cognitive challenges while still in the workplace, which is likely to be a growing challenge in the coming years. Finally, if we receive the second grant for which we have applied, we will open the Memory Assessment Center. Our region, like most, is woefully under-resourced to offer early and accurate diagnosis integrated with a wide variety of resources to ensure that life may still flourish within the reality of progressive memory loss (a six or seven month wait for an assessment is not uncommon). Ultimately we would like to offer assessment services in a non-clinical setting to minimize anxiety. We will report in more detail on these efforts as they unfold. Meanwhile, it is off to Vienna, where Susan and I will each present papers and listen to many more. We will post stories and pictures in the coming days.

Response to the National Plan to Address Alzheimer's Disease

Our publisher, Johns Hopkins University Press, invited us to write a "guest post" on their JHU Press Blog in response to the much-discussed and debated National Plan. It can be found here.

Pamphlet for congregations is now available

What began as a brief hiatus from posting on this blog turned into a lengthy one – it is high time for us to become active again, as we have a great deal to share. Our book will be going into a second printing, but unfortunately there are no current plans for a paperback edition, so it remains more expensive to purchase than we would wish. Because of this (and because some folks report that they found some portions of the book a bit challenging to read), John recently wrote a short pamphlet titled Aging, Dementia, and the Faith Community: Continuing the Journey of Friendship. As the title suggests, it is designed as a resource for congregations. It is lighter on “theory” than our book, focusing largely on practical ways in which congregations can include and support members journeying into memory loss and their care partners. It also incorporates some of the work we have been doing since the book was published, particularly on establishing community programs for persons with dementia, their care partners and their friends. Because we want to make this resource available to as many persons and congregations as possible, John has arranged for the Ekklesia Project to make it available as a free download on their website. It can be found here. Printed copies are available in quantity from the publisher for one dollar – please contact us if you would like to order copies. We look forward to your comments!