Friday, December 21, 2012

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.