Agrace Hospice Care is planning to construct what it says will be a first-of-its-kind “dementia village” in the U.S. at its Fitchburg care facility, as it grapples with rising occurrences of dementia and Alzheimer’s disease in patients and high rates of caregiver burnout.
The $30 million project, which was announced Tuesday, aims to establish a “kinder” approach to memory care that allows patients to maintain their sense of autonomy and quality of life by implementing a Dutch dementia village concept called “Hogeweyk” (pronounced HOG-wick) that turns traditional memory care on its head.
Rather than remove people with dementia from the hum of everyday life and house them in institutional, hospital-style nursing facilities with stringent security, the Hogeweyk model seeks to mimic the life they already know while providing little-noticed guardrails. Doctors and nurses don’t wear scrubs and act more like friends and neighbors.
Traditional hospital-like settings are often stressful for dementia and Alzheimer’s patients, Agrace Vice President of Medical Services Dr. Hilary Bingol said.
For those with more advanced disease who are no longer able to form memories, waking up each day in what feels like a hospital rather than at home can be confusing and frightening, Bingol said. The hard floors, echoing noises and the sound of bells and alarms can feel chaotic.
With traditional memory care, the trajectory is predictable, Bingol said: a steady, irreversible decline. Experience in the Hogeweyk model finds patients largely plateau and only decline rapidly just before they die, she said.
“Our hope is by creating this model similar to Hogeweyk, and really focusing on the quality of their life and comfort, that we can see a similar plateau where people will be able to really engage and enjoy up until the very end of their life,” Bingol said.
Agrace’s village will consist of eight “houses,” each with eight bedrooms, that include shared home-style amenities like a kitchen and a living room. The houses will be split into different themes to match residents’ life experiences and aid in “reminiscence therapy,” which relies on tapping into people’s memories to help improve brain health.
House themes in the Dutch model center around life experiences such as a past career in the trades, a life as a homemaker or the person’s religious faith. Agrace’s model will have three themes, which are still being honed but are expected to center on Midwestern values and the Madison-area life experiences.
Built in an oval around a courtyard, the northern side of the village is expected to have common spaces similar to those patients encountered in everyday life before their diagnoses, such as a small convenience store, a theater, a salon and a fitness center.
The dementia village will be the first in the U.S., Agrace said, even as a nonprofit in Sheboygan breaks ground on a similar concept to be named Livasu, short for “live as usual.” The Livasu development will allow people with dementia and Alzheimer’s to own homes and live with their loved ones or bring in hired help, while Agrace’s version more closely mirrors the Hogeweyk model, Agrace CEO Lynne Sexten said.
Sheboygan’s will also be nearly twice the size, with 124 manufactured homes to Agrace’s 64 living units. Both concepts will have staff on-site to help residents.
Other copycats of the Hogeweyk model have been attempted elsewhere in the U.S. but eventually strayed from the original intent, Sexten said.
“What we’re very committed to doing is bringing this model, lock, stock and barrel to the United States,” Sexten said.
Community need
Most of Agrace’s hospice care work is done in people’s homes and assisted living centers, where staff are faced with a grim reality: caregivers who are burned out, in financial turmoil or facing health challenges of their own, often because of the toll caring for a love one takes on them.
About half the people Agrace serves, both on and off campus, are experiencing some kind of cognitive decline, a “tremendous uptick,” Sexten said. Twelve of the rooms on Agrace’s campus have been reassigned to memory care.
The rising need prompted Agrace’s leaders to look for different ways to meet the community’s need.
“You don’t see a lot of really happy people in memory care units,” Sexten said. “There’s wonderful people that own and work in these kinds of facilities. It’s just, memory care in our country is structured a certain way. We started talking about, ‘Is there a better model out there?’”
Agrace already offers memory care services not directly tied to hospice. Its Adult Day Center on the Beltline between Fish Hatchery Road and Todd Drive attempts to help. Monday through Friday, dozens of people with dementia and Alzheimer’s are given a place where staff lead them through activities such as arts and crafts, exercise and sing-alongs.
On Friday, a client taught his peers taekwondo before they danced to Diana Ross and the Supremes and ‘60s Motown, tapping into memories from six decades ago.
Leaders at Agrace hope the creation of the dementia village will make a devastating diagnosis of dementia or Alzheimer’s a little less harrowing.
Two years ago, Agrace launched dementia support programs for people who had been recently diagnosed and their caregivers. But a physical entity like the dementia village, where people can see the resources and the quality of life, could be more effective, officials said.
“None of us want that diagnosis,” said Dr. Ken Robbins, director of Agrace’s memory care suites. “But my hope is that people will feel less hopeless, that people will feel that there is a course that I can take … that looks like maybe I can actually enjoy my life.”
People-centered approach
Traditional memory care takes the life out of people, Eloy Van Hal, one of the developers of the Hogeweyk village in the Netherlands, said. People with dementia and Alzheimer’s typically don’t cook for themselves or go outside unsupervised. The loss of autonomy makes them deteriorate faster, he said.
The Hogeweyk model instead seeks to give people their lives back, with guardrails. Van Hal and Jannette Spiering, developed the model after working in dementia care in an East German architecture-style facility — it was ugly, concrete and unwelcoming, Van Hal said. People with or without dementia and Alzheimer’s thrive in neighborhoods, not confined units.
The Hogeweyk concept also focuses on a different type of risk. In traditional memory care, the prevailing concern is that people with dementia or Alzheimer’s will end up harming themselves or others out of confusion or fear. But Van Hal instead sees risk in being locked in a facility, not engaging in life and often sitting in front of the TV for hours on end.
“We really moved away from the clinical model to much more social, human model. If you realize what happens in dementia care, it’s all about care, your disease, and we forget that people are human beings. And what do you still want to do in the last phase of your life?” Van Hal said. “People with dementia are not stupid, but we must allow them to (live life) and guide them where necessary.”
The dementia village model has drawn international attention and awe — when people visit, they can hardly believe the patients they’re visiting have dementia or Alzheimer’s, Van Hal said.
People in the Hogeweyk-style dementia village are also less likely to decline, have fewer behavioral issues and are less dependent on medication to slow the progression of the disease, Sexten said.
Everything under one roof
The physical footprint of Agrace is expanding a bit, but most of the dementia village will be contained within its current facility. That will require the demolition of about half of the hospice’s 50 beds in its eastern wing when the project breaks ground in May.
As part of the construction, Agrace is also looking to consolidate some of its other services, including its adult day care and grief counseling program, to its Fitchburg campus. The adult day care clients will be able to use the amenities at the dementia village, Sexten said, so should they eventually come to live at the village, it may feel familiar to them.
The village will be named for Madison philanthropists Ellen and Peter Johnson, who helped Agrace expand two decades ago and created an endowed professorship at UW-Madison dedicated to improving palliative care. They’re the lead donors with a $7 million donation, as they view the dementia village as a “kinder approach” to memory care.
The couple are repeat donors to Agrace after having negative experiences with the end-of-life care their loved ones received, they said. Peter said his mother died a “horrible” death in a hospital when he was in his 20s, and Ellen served as a caregiver for both her mother and sister at the end of their lives, which occurred within six months of each other.
The majority of a person’s Medicaid costs are paid out in the last two years of a person’s life, Peter said, as health facilities spend money trying to keep people alive. He instead feels that money should to go to help the terminally ill die peacefully without pain.
“We got sold on dying with dignity … and since we’re 88 years old, we’re thinking about these things,” Peter said. “It’s very easy to get involved in palliative care and hospice, particularly when you’ve seen a lot of your friends die.”