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People cannot avoid death, but they often avoid talking about it. That’s why many people don’t receive as much — or any — hospice care they qualify for, experts say. 

“There’s a real taboo in society that hospice equals death,” said Alisa Gerke, the board chair of Wisconsin Hospice and Palliative Care Collaborative and executive director at Unity Hospice and Palliative Care, a nonprofit provider that serves 14 northeast Wisconsin counties.

The goal of hospice isn’t to speed up the dying process; it’s to make people more comfortable — treating the symptoms of an illness instead of trying to cure it. 

Once families enroll in hospice, Gerke said, they often ask: “How come nobody told us about this sooner?”

When to talk about hospice

Don’t wait for your provider to bring up hospice.

Patients and providers often wait for the other person to bring hospice up, said Angela Novas, an advanced certified hospice and palliative care nurse and consultant at the nonprofit Hospice Foundation of America. Let providers know that’s something you might be interested in. 

Patients or their loved ones can also reach out to hospice providers directly and ask for an eligibility assessment, Novas said.

The basic requirements for adults to receive hospice care under Medicare include:

• Verification from two physicians that a patient has a life expectancy of six months or less. 
• A patient’s willingness to pursue treatments to provide comfort instead of treatments aimed at extending life expectancy. 

Clearing up misunderstandings about hospice

Some people may have misperceptions about hospice. Here is what it is not: 

• A place. Instead, it’s a model of care, Gerke said. While some providers may run facilities, hospice care can be provided at home and in nursing homes, assisted living facilities, hospitals and other settings.
• Constant nursing care. Hospice is meant to supplement care from family or facility caregivers, Novas said. But providers should be readily accessible for questions and concerns.
• Stopped if someone lives longer than six months. Instead, providers work to re-certify that someone is still likely to die within the next six months, Gerke said. Patients are no longer eligible for hospice if their life expectancy unexpectedly improves.
• Permanent. Patients can decide to stop hospice and try curative treatment. If their outlook doesn’t improve, they can return to hospice, Gerke said. They can also freely switch providers.

So what’s palliative care?

Palliative care is a philosophy and medical speciality focused on alleviating suffering, according to Dr. Sara Johnson, a palliative care physician and University of Wisconsin School of Medicine and Public Health professor.

Hospice is a form of palliative care for people at the end of life. But people with a serious illness can access palliative care earlier in their diagnosis and while receiving curative treatments.

Palliative care services are becoming more accessible, Johnson said. 

Palliative care specialists add a layer of support for patients and their families, Johnson said.

There is no harm in asking a provider about palliative care options, Johnson said. “If you’re thinking about it, just ask.”

How to find the right provider

Ask local providers for hospice care recommendations, Novas said. But don’t be afraid to shop around. Experts recommend asking these questions before choosing a provider:

1. How long have you served this area, and where are your staff located? 
   
   “Having staff that know that community, live in that community, are a part of that community is huge,” Gerke said.
   
   
2. What is your response time?
   
   A patient’s condition can quickly change, making it important to know how quickly staff will answer calls or arrive in those cases.
   
   
3. What is your relationship with nearby providers?
   
   If you know you want to use a particular nursing home, hospital or physician, it helps to know whether hospice providers have relationships and contracts with them.

4. What grief support do you offer?
   
   Medicare requires hospice companies to provide families with bereavement services. But the level of those services can range widely.
   
   
5. What is your Medicare rating?
   
   Medicare.gov offers a hospice look-up tool with quality care ratings. The federal agency provides comparative ratings based on family surveys and metrics like nursing visits in patients’ last days before death.

6. Are you for-profit or nonprofit?
   
   Private equity and publicly traded companies are increasingly taking hold of the hospice industry. Those providers have been associated with lower quality of care, according to a Cornell University study.
   
   For-profits face expectations around financial performance and typically have obligations to shareholders, Gerke said.
   
   But a nonprofit status does not guarantee better care, Novas said. People should prioritize whether a provider fits their specific needs.

7. What services do your volunteers provide?
   
   Medicare requires hospice providers to have a volunteer program. Do volunteers play games with patients? Provide pet therapy? Read to people? Some volunteer programs are more robust than others, Novas said.

8. What medications do you not cover?
   
   Not all medications and supplies are covered under the Medicare hospice benefit, Novas said. It’s important to know what you might have to pay for out-of-pocket or with other health coverage.

More resources on what to ask providers and know about hospice can be found through the Hospice Foundation of America’s website.

What to know about hospice and palliative care in Wisconsin is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

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Wisconsin has thousands of assisted living providers. Some are small houses; others are more like apartment complexes. Some take Medicaid, while others require residents to pay out of pocket. It’s a lot to sort through, especially when someone needs care fast. 

Searching “assisted living” on Google pulls up several pages of facilities, many listed under a prominent “sponsored results” section.

Mixed in with actual providers are referral companies that promise a way to compare options. Long-term care referral companies don’t typically charge families for their services. Instead, they often receive money from facilities they recommend.

Wisconsin lawmakers in May proposed legislation to make any financial relationships between a referral agency and an assisted living facility clearer. 

Supporters of the bill said disclosure requirements could help families make more informed decisions. Opposing the bill, referral companies argue that they are already transparent and that proposed guardrails would prevent them from helping more families. 

The bill failed to pass before the Assembly adjourned last month. But the debate left me wondering: Where should someone start the search for care?

Aging and disability resource centers

Aging and disability resource centers (ADRCs) can provide objective provider lists for free, alongside information about services and payment options, said Janet Zander, the advocacy and public policy coordinator with the Greater Wisconsin Agency on Aging Resources, Inc. 

The Wisconsin Department of Health Services lists ADRCs by county online. 

ADRCs cannot recommend one facility over another, Zander said. But they can suggest what to look for during a tour. Zander also recommends looking at a facility’s Wisconsin Division of Quality Assurance surveys.

They can also help people identify what kind of care makes the most sense and explore aging at home, said Sara Tribe Clark, the director of the Eldercare Locator, which offers local resources for older adults, people with disabilities and caregivers. 

If you work with a referral agency, ask questions

Tribe Clark recommends asking:

• Do you receive compensation from the providers you recommend?
• Are your referrals limited to certain facilities?
• How do you determine which providers to suggest? What is the criteria for inclusion/exclusion?
• Are there providers in my area that you do not represent?

We want to answer your questions

Getting answers to my own questions is a perk of being a reporter. But I haven’t yet navigated Wisconsin’s aging and disability resources for myself or a loved one. I know I’m missing important questions, so please send me yours, alongside your perspectives.

What has been confusing or frustrating about finding care?

What do you wish you’d known sooner?

What made the process easier?

Even after more than two years reporting on long-term care in Wisconsin, I won’t have all the answers. But I will find experts who do. Email me at acostello@wisconsinwatch.org or call 608-616-5239.

Finding long-term care is hard. Here’s how to start. is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

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Wisconsin’s average age is slightly higher than the national average age. 

According to data from the Wisconsin Department of Health, which shows the average of ages between 2019 and 2023, the most recent data available, the national average is 38.7. 

In Wisconsin, the average age is 40.1 for the same time period.

Those numbers reflect the rapidly aging baby boomer generation, which is skewing Wisconsin’s population to individuals over 65, according to Wisconsin Public Radio.

Between 2010 and 2020, this demographic grew from 777,000 people to more than 1 million and is projected to expand to 1.3 million by 2030. Meanwhile, the working-age demographic in the state is holding steady, meaning that the population of those over 65 is growing as a percentage of the total.

This fact brief is responsive to conversations such as this one.

Sources

• Wisconsin Department of Health Services: Aging: Demographics in Wisconsin
• Wisconsin Public Radio: Aging Wisconsin: Wisconsin’s baby boomers are state’s fastest growing age range
• Wisconsin Department of Administration: Population Projections

Is Wisconsin’s population older than the national average? is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

Reading Time: 7 minutes

Click here to read highlights from the story

• Dementia Innovations, a nonprofit started in Sheboygan County, is developing what it describes as the first U.S. village where people diagnosed with dementia will live and own homes.
• Unlike a traditional risk-averse memory care facility with locked doors, homeowners at Livasu, short for “living as usual,”  will be free to navigate the village with support from staff.
• It’s similar to a European model. Experts say the village care model is difficult to replicate in the litigious U.S., but Livasu’s founders hope the village will show it can work in Wisconsin and other states.
• To limit costs, the village is using manufactured homes, a more affordable alternative to site-built options.

A row of footprints followed John and Terri Cooper, both 70, as they carefully navigated an icy road near Sheboygan, Wisconsin. They stopped at a row of concrete slabs. 

“This is our house,” John said, waving at the first snow-covered block.

“It’s pretty big,” Terri added while standing on the foundation.

As they do every Sunday, the Coopers had driven around 20 miles from their independent living community to the construction site of their soon-to-be home. John flies a drone over the neighborhood taking shape around it, which will include a grocery store, a spa and a gym. He photographs progress on the 45-acre development designed specifically for people like Terri, who has Alzheimer’s disease.

The couple has moved a lot during their 50-year marriage. But this summer’s move will be different from all the others.

Dementia Innovations, a nonprofit started in Sheboygan County, is developing what it describes as the first U.S. village where people diagnosed with dementia will live and own homes. It’s similar to a European model that encourages people with memory loss to remain more independent. The Sheboygan County village, Livasu, short for “living as usual,” will allow people with dementia to live alone or with loved ones and continue typical routines from their homes as their disease progresses.

Applauded for years in other countries, experts say the village care model is difficult to replicate in the U.S. Livasu’s founders hope the estimated $14 million village will show it can work in Wisconsin and other states.

To limit costs, the village is using manufactured homes, a more affordable alternative to site-built options. People will buy their home and set hours of caregiving, depending on their level of need.

Unlike a traditional risk-averse memory care facility with locked doors, homeowners will be free to travel throughout the village with support from staff.

“We all take risks every day, but as we age, and especially as we age with dementia, there’s a safety-at-all-cost approach,” said Livasu’s project lead, Mary Pitsch. “That cost is actually a loss of personhood.” 

Rather than a fence surrounding the village or automatically locking doors, landscaping will direct people from their home toward the community’s “downtown.” People living in the village’s 124 houses will have access to a lodge with support staff and a place to eat meals with neighbors and to watch the Packers, Pitsch said.

The village will eventually feature a public grocery store and a restaurant.

“We are changing the way we are thinking about care and support,” Pitsch said.

Aging at home — together

The Coopers met in college. 

“I picked Terri out almost immediately. It took me some months to convince her that I was the right guy,” John joked.

“Thankfully,” Terri chimed in with a laugh.

As the couple raised two daughters, John worked different technology jobs and photographed sporting events like triathlons on the weekends. Terri was a structural steel detailer. 

After watching her mother battle Alzheimer’s, Terri made sure to eat healthy and exercise to prevent herself from getting the same disease. But in 2019, John started noticing changes. Two years later, Terri was officially diagnosed. 

“I mean right now,” she asked John outside of the Livasu construction site,  “I think I’m OK, right?” 

“Yeah, you’re great!” he responded emphatically, prompting another round of laughs.

Terri shook her head.

“This is what I live with,” she said.

The couple moved into an independent living center over a year ago after John was diagnosed with two forms of cancer that are now in remission.

“We wanted to be someplace where, if I was gone, Terri could live and have people take care of her,” John said. “That’s still the goal.”

Unlike institutional settings, Livasu will allow them to age in their home together.

Manufactured housing brings savings 

The Coopers are excited to again own a home, even if it’s smaller than they’re used to.

First they left their 2,400 square foot home in Neenah for a 1,500 square foot duplex. Their future manufactured home in Livasu measures just 1,140 square feet, John said. But unlike the independent living duplex they rented, they are purchasing this home.

Home prices in Livasu currently range between $95,000 and $175,000 — less than traditional site-built houses. 

Like with any manufactured homes, savings come from finding scale in mass production, with factories buying materials in bulk and cutting down material waste through computer design. 

The Livasu homes are built off-site, limiting construction time and noise as people move in at different times, Pitsch said. The homes have a title, similar to a car, instead of a traditional deed. That will make transferring the homes between owners easier.

Terri Cooper lived in a mobile home during one year at college, John recalled. But today’s manufactured homes are higher quality, he said. 

“They’re actually built pretty nice,” he said.

Every detail is designed for someone aging with dementia, Pitsch explained while walking through a model home placed outside the Livasu construction zone. 

More lights in each house help aging eyes. Dark door handles contrast to lightly painted doors. The homes feature safer electric stoves instead of gas.

While homes in most manufactured housing communities — traditionally called “mobile home parks” — have stairs,  Livasus will place homes at ground level.

Bedrooms will have a direct line of sight to the toilet, which can help prevent incontinence.

“The shower was a big discussion. Do you have glass doors? Do you have a shower curtain?” Pitsch remembered debating with the other designers. 

“Lots of conversations about some things that would seem really simple, were long conversations,” she said, “and we made the best decisions we could.”

Dignity in dementia care

Pitsch, a social worker, developed her passion for this work while working with older adults. She has run an at-home care company with her husband for close to 20 years. She learned Sheboygan-area law enforcement often responded to emergencies involving people with dementia. 

She and other community members started a task force to evaluate the county’s response to residents with dementia. That prompted changes in the county’s emergency protocols and the creation of Dementia Innovations.

“I’m kind of one of those people that if it’s not me, then who’s going to do it?” Pitsch said.

Pitsch and others started planning a way to better care for people with dementia and to prevent emergency situations in the first place. They learned about Hogeweyk, the world’s first dementia village in the Netherlands.

“We are far behind other countries in a better, humanistic way of providing care for those with dementia,” Pitsch said.

Dementia care in the U.S. tends to prioritize safety above all else, said Emily Roberts, an associate professor at Oklahoma State University who researches the connection between older adults and their physical environment. 

Creating environments where people can make choices and take risks can be expensive, especially in a litigious country like the U.S., she said.

Support staff in Livasu will regularly monitor the grounds. Cameras can alert them if someone walks in or out of the village through an unexpected area.

Creating a home-like environment also prevents people from wanting to leave, Roberts said. As the number of people with dementia continues to grow, the country will need more environments that support people with dementia, she said. That’s especially true in aging Wisconsin.

A private room in a nursing home cost $127,750 on average in the U.S., according to the Alzheimer’s Association — more than a smaller home at Livasu. Village residents will pay for care as they need it, similar to at-home care, and potential homeowners discuss their finances with Livasu volunteers, Pitsch said. 

Livasu raised more than $8 million for the first phase of construction. It still needs to raise around $6 million more to complete the entire village, but the first houses are already waiting to get placed on foundations.

Pitsch recently watched as a construction crew drove excavators and bulldozers over the giant field where a restaurant, post office and ice cream shop will eventually go. 

“I pinch myself,” Pisch said. “It gets pretty emotional actually, to see that it’s actually happening,” 

‘Wherever she goes, I go’

When the Coopers move in, they don’t expect to need any caretaking. They still make weekly visits to see their grandkids and take weeks-long hiking, camping and cycling excursions.

“Wherever I go, she goes, wherever she goes, I go. Except in the women’s bathroom,” John said, eliciting more laughs from Terri.

“We kind of like each other, so that’s OK.” 

As the couple finished checking in on construction of their future community, they carefully walked back to their car — holding hands the entire way.

‘Living as usual’: A new village in Sheboygan County reimagines life with dementia is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

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