Facilitators and participants in a support group for people living with dementia gather in the vestibule of the Chris & Suzy DeWolf Family Innovation Center for Aging & Dementia in Cedar Rapids, Iowa. The center offers numerous support groups
for people with dementia, their caregivers and older adults.
CEDAR RAPIDS, Iowa — Four years ago, Susie Winkowski and her husband left the resort they'd owned on the West Coast because his dementia was making it too difficult to keep up with the business. They moved to Cedar Rapids to
be closer to family. Suzie Winkowski felt overwhelmed and under-equipped for her caregiving role, until she learned about the Family Caregivers Center here.
Since connecting with the center, she's been taking part in caregiver support groups, building deep friendships with other caregivers and their spouses and learning how she and her husband can achieve the best quality of life even given his diagnosis.
The Winkowskis are among the dozens of people with dementia or caregivers who are benefiting from the offerings of the Family Caregivers Center and its new sister facility, the Chris & Suzy DeWolf Family Innovation Center for Aging & Dementia.
Mercy Cedar Rapids opened the Innovation Center in June to greatly expand dementia programming and services and to spur innovation regarding older adults and those living with dementia.
The Innovation Center, which is connected to HallMar Village, is a joint venture of Mercy Cedar Rapids and Presbyterian Homes & Services. HallMar Village is a 237-resident senior living community that opened in the fall.
Kathy Good with her husband, Dave Good, a retired judge who was diagnosed with Alzheimer's disease and who she provided care to for more than a decade.
Personal connection
Mercy took on dementia and caregiver services in a big way around 2014. Then-Mercy President and CEO Tim Charles had seen a caregivers' center in a hospital in New York and wanted to explore whether Mercy could
open a similar site. He was aware — and extensive subsequent research confirmed — that there was a critical lack of services and support in Cedar Rapids for the growing population of people serving as caregivers for people with dementia.
Charles recruited an acquaintance, Kathy Good, to lead efforts to start such a center. Good, formerly a social worker, was also a caregiver for her husband, Dave Good, who had dementia. First as a volunteer and then as paid Mercy staff, Kathy Good, along
with Charles and other Mercy staff and donors, visited caregiver centers elsewhere in the country. Good researched how Mercy might establish such a center. She engaged with Mercy executives, dementia experts, community leaders and a panel of caregivers
to develop ideas and build out some plans. She also took part in a business innovation incubator of sorts to refine the plans and worked with Mercy to create the site.
The Innovation Center opened in summer 2023. It is connected to the HallMar Village senior living community.
In December 2015, Good and a team of Mercy leaders opened the Family Caregivers Center on the campus of Mercy Medical Center in Cedar Rapids. The caregivers' center has offices for its four staff members and working space for its dozens of volunteers.
It also has a few small meeting rooms and a library of books and other materials on dementia, caregiving and related topics. At the center, caregivers can access resources, support groups, educational experiences and other programming. Good is the
center's director.
Several years after the caregivers' center opened, Good and her team and executives at Mercy identified a need to expand programming to better serve not only caregivers but also people with dementia as well as older adults. She and the team recognized
they needed more space. When they learned that there was a shuttered church available for development on the property where Mercy and Presbyterian were building the HallMar senior living community, Good and her team jumped at the chance to transform
that church into a hub serving people with dementia and older adults.
Customer discovery
The church has been totally revamped. What was the vestibule now is the Innovation Center welcome area, staff offices and meeting rooms; the former sanctuary serves as a multipurpose conference area, event space,
auditorium and exercise room. The center also has a secondary gathering area equipped with a commercial kitchen. There also is a Center for Memory Health where clinicians can evaluate people to determine if they have dementia. The clinical team works
with clients to develop care plans and then provide needed services. The Innovation Center connects to HallMar Village. Walking trails around the center link to surrounding neighborhoods to encourage integration into the broader community.
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Good says she and her colleagues who have developed the center and its programming have relied heavily not only on research but also on a process they call customer discovery, to ensure that what they develop is in line with what people want and need.
Through that approach, staff who are developing plans and programming conduct extensive engagement with the people they'll be serving and with experts in the field.
The Innovation Center is meant to serve as a "living classroom." Its staff and volunteers are constantly evolving the center's offerings in line with people's stated needs and preferences. Current offerings include the Center for Memory Health's assessment
and follow-up services, educational and informational presentations, caregiver respite programs, social and support groups for people with dementia and their caregivers, exercise classes, a singing group, and entertainment such as musical performances.
Coming soon is a "connection club" that will provide engaging activities for people living with earlier-stage dementia and respite for their caregivers. The center also has a showroom featuring appliances that could be helpful for people with
dementia and displays of everyday items — ranging from can openers to chairs — that could be useful to them in their homes.
The Innovation Center also plans to expand its involvement in research projects and to engage in advocacy on behalf of people with dementia and their caregivers.
A patio offers expansive views of the grasslands behind the Innovation Center. The center is connected to HallMar village — a senior living community. Walking paths go through both properties. Eventually the paths will connect with those
in adjacent neighborhoods.
The Family Caregivers Center has an annual budget of around $450,000, and the Innovation Center has a budget that is around $400,000. (These figures exclude the budget for the Center for Memory Health.) Both the caregivers' center and Innovation Center
are funded by Mercy and philanthropy through the Mercy Medical Center Foundation. Mercy Medical Center supplies a significant amount of funding.
Focus on strengths, capabilities
Good says a thrust of the Innovation Center is to reframe people's perspectives on aging and dementia.
She says there is a pervasive view in society — and often among people with dementia and their caregivers — that those with dementia can't contribute much to those around them, and that they can't have much quality of life.
To the contrary, Good says, there is much that people with cognitive impairment can do and enjoy.
The Innovation Center's staff and volunteers have a mantra: people should focus on their strengths and capabilities, rather than having a singular focus on what they've lost and the negative aspects of life with dementia. Staff and volunteers help
people with dementia, and their caregivers, to identify and build upon their capabilities and adapt to deficiencies.
Winkowski says the Family Caregivers Center and now the Innovation Center are helping her and her husband fully grasp that "even though he has dementia, he can still do what he did before," such as traveling, socializing and even country western dancing.
Barb Snively and Cindi McKee volunteer with a Family Caregivers and Innovation Center program that is a partnership with a church. They provide companionship to people with dementia while the caregivers get respite.
McKee says, "No matter what they are dealing with physically or mentally, they are still a valuable person."
Snively says her volunteer work has reaffirmed her belief that people living with dementia still have a lot to contribute to their world. "They make us volunteers smile," she says. "They are still capable of giving and receiving joy."