“People love to feel ‘normal,’” says Betty Lefebvre-Hill, MSE, the Fox Valley Memory Project’s Program Coordinator.
“They want to get out and have the type of experiences they’ve enjoyed their whole lives, but then felt that they had to put aside. Re-engaging is joyful, and it’s heartwarming to be a part of that.”
For an organization not yet three years old, the Appleton-based Fox Valley Memory Project offers an impressive range of resources and activities for people with dementia and their caregivers.
The project’s Memory Loss Resource Center includes a library, a care coordinator and space for classes, meetings and support groups. Staff can refer Center visitors to the project’s partners at UW Health Fox Valley Family Medicine for initial memory assessments. UW Health Fox Valley Family Medicine also offers an in-home visit to assess people’s functioning where they live, which provides valuable information as well as the comfort of a familiar environment.
The Fox Valley Memory Project organizes memory cafes in seven locations, both urban and rural. It holds educational events for health care professionals, people with dementia and their caregivers, and the general public. The project is working with Goodwill Industries to promote workplace accommodations for people with dementia and their care partners. It’s training local businesses and organizations to be dementia aware. It’s even starting a chorus for people with dementia and their care partners, modeled after a similar group in New York.
“One of the things that we find in working with people with dementia and their care partners is that they become socially isolated,” explains Susan McFadden, PhD, a research consultant with the Fox Valley Memory Project and a professor emerita of psychology at the University of Wisconsin–Oshkosh.
“Friends pull away and organizations—even churches—don’t know how to remain in relationship with people with dementia. And the negative health implications of that isolation have been well documented.”
The Fox Valley Memory Project traces its beginnings to early 2011. That’s when the Basic Needs Giving Partnership of the Community Foundation for the Fox Valley Region challenged local advocates to develop collaborative programs to meet the needs of older adults. Four people—McFadden; Beth Belmore, then an executive with Lutheran Social Services; Margie Rankin, the now-retired administrator of Park View, the Winnebago County Skilled Nursing Facility; and Lee Vogel, MD, a geriatrician with the UW Fox Valley Family Medicine Residency Program—responded by forming an aging issues task force.
Their interest soon turned to creating a dementia-friendly community, which the Fox Valley Memory Project describes as a “community that cares, engages, respects and supports those experiencing dementia and their loved ones.” An estimated 7,500 people age 65 and older in northeast Wisconsin’s Fox Valley are living with dementia. By 2030, that number is expected to grow to 14,000.
Health care professionals have been involved with the Fox Valley Memory Project since its inception. Two public health nurses help organize its programs, and a spring 2013 informational event involved physicians, RNs and nurse practitioners. “It’s really essential to educate medical personnel and for them to help educate the public,” says Lefebvre-Hill.
In the absence of good information, fears and negative assumptions about dementia thrive. “The stigma surrounding dementia is acute,” says McFadden. “We have to reduce it as much as possible.”
The Fox Valley Memory Project combats stigma through its memory cafes, which offer people with early-stage dementia and their family and friends a supportive environment where they can ask questions, share experiences or simply have fun. The project also works with area long-term care facilities to establish creative engagement programs for people with later-stage dementia.
“We want to show the wider community what people with dementia are capable of,” says McFadden. “People with dementia have marvelous creative abilities.”
Last year, the Fox Valley Memory Project held a “poetry party,” involving people with dementia from five long-term care facilities and the founding director of the Alzheimer’s Poetry Project. In February, after organizing TimeSlips creative storytelling trainings for staff from nine facilities, the project held another public event featuring cardboard buildings inspired by residents’ stories.
McFadden, who has published studies on aging, dementia and creativity, is working to document local residents’ attitudes towards dementia. While it’s too soon to say if the Fox Valley Memory Project is increasing awareness and support, one thing is clear—people want more information about dementia.
“It can be challenging to be friends with someone who doesn’t remember your history together,” McFadden admits. “But remaining in relationship with a person with dementia can be a very rich experience, with benefits for both people.”
Photo by Susan McFadden