Originally published: Insight on Business Magazine, April 2024

 

Dementia affects 1 in 9 Americans over the age of 65. And without a cure — there currently is none — many experts anticipate that number will double by 2050.
 

So, how do you want your loved one’s last years to look? In Sheboygan County, three nonprofit leaders are answering that question with compassion — quickly building a model along the lakeshore that has captured global attention.

The 501(c)3 organization Dementia Innovations is led by Chuck Butler, Mary Pitsch and Michelle LeMahieu; it grew out of the work of the Dementia Crisis Task Force of Sheboygan County — a project that dates back to Butler’s long tenure with the county’s fire and EMS departments.
 

The idea for the task force came after police officers told Butler they felt ill‑prepared to assess or respond when called to dementia crisis situations, falling into standard operating procedures that frequently resulted in people being shuffled between hospitals and agencies and perpetuating a cycle of housing instability that was in no one’s best interest.
 

At the lowest point, Sheboygan County Sheriff Cory Roeseler says, a person was tased inside a nursing home. Being the first line of defense doesn’t mean being the best line of defense, Roeseler says. He joined the Dementia Crisis Task Force in 2018 to help find a better way.
 

The work would lead to the largest‑ever reform to Sheboygan County’s 911 system, which is now a nationwide model, and the development of groundbreaking first responder training materials, which are today distributed through Dementia Innovations. In just about two hours, trainees gain an understanding of the disease that has a transformational impact on their crisis approach through creative thinking and mindset shifts.
 

“The underlying premise [was] to change the lens through which we looked at a dementia crisis from one of law enforcement to one of medical, because there’s no criminal intent behind these behaviors,” Butler says.
 

The training has prevented unnecessary emergency transports and brought more dignity to county residents living with dementia, Pitsch says. Many of the county’s real-life success stories are highlighted as examples in Dementia Innovations’ training program, including one EMS dispatch to an assisted living facility in which Pitsch says a gentleman was begging to “go home.”
 

Instead of taking him to the hospital, Pitsch says, “they took him out to the ambulance, went around the block, and came back and brought him back into a different door. He was all settled down and much happier.
 

“It just warms my heart when I hear that kind of creative approach, and clearly it’s because of the training that they were able to do that.”
 

Holistic, humanistic approach
Institutions and conventions have long loomed large over dementia care. Society has a long history of institutionalizing people suffering from dementia, among other diseases.
 

To Eloy van Hal of the global consulting firm Be Advice, it’s like a rigid switch is flipped once a dementia diagnosis is made: A person who once had full autonomy now is allowed to take absolutely zero risk.
 

It was that long-held convention van Hal and Jannette Spiering sought to challenge when they founded The Hogeweyk, the world’s first “dementia village,” in Amsterdam in 2008. The community has since become a model for embracing care focused not on people’s limitations, but what they can do — and how doing more means living more, being more, healing more and medicating less.
 

Today van Hal speaks globally and consults with clients, including Dementia Innovations, on issues of deinstitutionalizing dementia. He says the United States has witnessed deinstitutionalization of developmental disabilities and autism by shifting focus from disability to ability. The path forward for dementia is similar.
 

“We are still at the beginning of this movement,” van Hal says.
 

It’s a movement with strong roots in humanistic psychology, says Dean VonDras, professor of psychology and founding director of the University of Wisconsin-Green Bay Gerontology Center, who has conducted extensive research on Alzheimer’s, the impact of art and music therapy on dementia, and care concepts such as the Eden Alternative.
 

“So often, throughout our society, if somebody isn’t perfect in some way, it’s like a rejection,” VonDras says. “I tell my students, as a person changes and has dementia, they’re still a person, and there’s still lots to respect about them. There’s still lots to appreciate. There’s still lots to love.”
 

LeMahieu, van Hal, VonDras and Roeseler all say restrictions and unnecessary interventions commonly cause or exacerbate agitated behaviors in people with dementia. The dignity of maintaining life activities and interactions that are as close as possible to normal is not just the right thing to do, but also correlates positively with health outcomes.
 

“The opportunity to express ourselves is really important, even if we have dementia,” VonDras says. “I think what dementia villages, the Eden Alternative, [organizations like] Dementia Innovations are hoping to do is tell families, ‘It’s OK; they’re still a person. We can still respond to them as a person, but we’ll have to change. We’ll have to be different, too.’”
 

But what does “being different” mean? Browse through The Hogeweyk’s website and you’ll see a section labeled “Truman Show?,” referring to critics who say the care concept creates a misleading “alternate reality” reminiscent of the 1998 film. Of course, the comparison is silly: No one who works at The Hogeweyk is acting, but rather communicating mindfully and creating a healthy environment for residents with unique needs.
 

“[When we approach] caregiving in new ways, we recognize that our hearts can be bigger, that our minds can be more open and that we can change how we [think] about old age,” VonDras says. “When we do that, there’s a whole lot of new things to discover.”
 

Making a village
After seeing the success with training, education and policy reform, Dementia Innovations was inspired to do more: an ambitious project that Pitsch says will “put Wisconsin on the map.”
 

Thanks to a donation of 79 acres of land by the Ruth DeYoung Kohler Community Impact Fund, Dementia Innovations is creating Livasu Village — a planned neighborhood of 124 homes in the town of Wilson that fully embraces the concepts championed by van Hal and The Hogeweyk. It will be the first neighborhood of its kind in the United States, with businesses that are open to the public, amenities such as a theater and hobby spaces, and care resources for residents with dementia, all embracing a degree of positive risk acceptance that will allow individuals to “live as usual” — the rallying cry that inspired the community’s unique name.
 

The strict regulations and dearth of risk acceptance that normally characterize operations at a care facility won’t affect Livasu Village, because the neighborhood concept relies on residents owning their own homes, Pitsch explains. The choice of using high-quality manufactured homes means Livasu is able to give residents the independence of home ownership while also allowing quick transfer of ownership and avoidance of the mortgage process.
 

Another major advantage of the home ownership concept, LeMahieu says, is that residents can continue to live with spouses and welcome family visits whenever they please. “This entire village really is being built as much for the family members as for the person with dementia, because the family is affected by it as much as their loved one,” she says.
 

Success will be measured by decreases in the use of psychotropic drugs and crisis incidents, as well as increases in smiles per day (“we haven’t quite figured out how to measure that yet,” Butler says) and a commitment to making the end of a person’s life a meaningful part of life. (“Taking people beyond just keeping them alive,” LeMahieu says, “to allowing them to fully live.”)
 

Livasu’s home ownership model is exactly the kind of out-of-the-box thinking van Hal says is needed to further his movement worldwide.
 

“We challenge our clients and their thinking, and sometimes our clients have to challenge their governments or their policymakers,” he says. “Everybody’s finding their own way, their own route to navigate innovation in their country and you see it’s possible to make steps forward.”
 

An ongoing capital campaign has been set up to fund the Livasu community infrastructure, and groundbreaking on the project will happen this spring, with the goal of opening in 2025, Pitsch says. Volunteers and donors continue to be needed to support the effort.
 

“Our timeline is pretty aggressive, but [we] really do think it’s doable,” she says. “We all have the vision; we have that passion, and now we need that community-wide time, talent and funding to bring it together.”
 

“[Chuck, Michelle and Mary] are going to show that, in the States, it can work, that you can have a different approach,” van Hal says. “You can be the example.”
 

For all of us
A personal connection to dementia — in most cases, highly personal — motivates leaders in the dementia care reform space. Roeseler will retire from his role as Sheboygan County sheriff this summer to focus on caring for his mother, who has been diagnosed with dementia. Her final years, he says, will be lived with dignity, and he is grateful for his experiences in Sheboygan County that prepared him to create that life for her.
 

It’s the life we will all want, knowing dementia is part of life and a statistical probability for anyone who lives to old age.
 

“If you want to change the future, you’ve got to start now,” Butler says. “We’re doing this for us in many ways.”