Dementia can be isolating and difficult to manage. This new Green Bay initiative can help.
GREEN BAY — Ever since Laura Nolan watched her grandmother take care of her Alzheimer's-stricken grandfather when she was a teenager, she knew she wanted to help people with dementia.
As she progressed in her career, first as a social worker, and then in executive management of an assisted living home, she trained both family and facility caregivers on best practices for how to interact and communicate with people who have dementia. Nolan noticed that behind the fits and outbursts, medicating, and police calls was a caregiver who wasn't always responding appropriately to the person's symptoms.
"Instead of having the tools to know how to interact and de-escalate, we kind of play into it," said Nolan, who also serves as chair of the Purple Angel subcommittee, a part of the Aging & Disability Resource Center of Brown County which trains businesses and organizations to better accommodate people with dementia and their caregivers.
It might be as simple as arguing over what day of the week, or even year, it is, but being confrontational with someone who has a brain disease can do a lot of harm. It's our brains, not theirs, that need reprogramming, Nolan said.
That's why, through a grant from the United Way, a new dementia-friendly initiative is underway across two Green Bay neighborhoods, Navarino and Downtown Green Bay. The mix of residential and commercial properties makes these two neighborhoods ideal for training opportunities, Nolan said. The initiative will also provide free informational sessions for residents to become Dementia Friends and businesses to become Purple Angel-trained.
Therese Barry-Tanner, who has been a project manager for the dementia-friendly neighborhood initiative since early August, said that even though 165 businesses and organizations in Brown County have gone through Purple Angel training, the neighborhood-by-neighborhood approach offers even greater benefits.
"If you think about a neighborhood-by-neighborhood approach, and the penetration you might be able to get by doing it in that microcosm … you get higher numbers being trained, which has a greater impact," Barry-Tanner said. "In my mind, it's a springboard."
How prevalent is dementia in Brown County and Wisconsin?
"Dementia" is an umbrella term for a group of neurodegenerative diseases that lead to loss of cognitive function, with Alzheimer's being the leading cause of dementia. As of 2021, Brown County has 4,426 people living with Alzheimer’s disease, according to the Wisconsin chapter of The Alzheimer's Association, and that number is projected to more than double by 2040.
Dementia typically impacts adults 65 years and older, but it can be diagnosed in people as young as 40. With 22% of Brown County's population aged 65 and older, and more on the way, health care professionals are bracing for the "silver tsunami," a term for the baby boomer generation aging out of the workforce and requiring more health care needs.
The oldest baby boomers turned 65 in 2011 and the youngest baby boomers will turn 65 in 2029, putting the nation and state more than halfway through this generation's retirement age. By 2030, nearly one in four Wisconsinites will be of retirement age, according to the Wisconsin Hospital Association.
It's projected that, by 2050, 130,000 people aged 65 and older in Wisconsin will be diagnosed with Alzheimer's disease. Important to the mission of the dementia-friendly neighborhood initiative, about 70% of people with dementia live in the community, as opposed to assisted living or nursing homes.
Casey Kapalczynski has spent nearly a decade at the Aging & Disability Resource Center and two years as a long-term care ombudsperson with the Board on Aging and Long-Term Care. She wishes more people understood that a dementia diagnosis isn't a death sentence, nor does it mean they can no longer enjoy a rich social life.
"Dementia is such an isolating disease for a myriad of reasons — fear, grief, insecurity — but … the best thing they can do is continue to include the person with dementia in as much of their life as they are able," Kapalczynski said. "That scope will inevitably narrow as the disease progresses, but people living with dementia can engage in life so much longer than we often let them."
What does dementia-friendly training look like?
Purple Angel is a global network that started in the United Kingdom in 2012 when Norman McNamara, a 50-year-old man recently diagnosed with dementia, was met with hostility by a shopkeeper. McNamara decided to turn this experience into a global movement that emphasized education and training.
Twelve years and four thousand miles later, businesses and organizations in Green Bay are signing on to be Purple Angel-trained. The idea, Nolan and Barry-Tanner both said, is to work with each business's unique trade and customer base.
The first step is for owners, managers and staff to understand the facts and figures of dementia, which include what dementia is, and the signs and symptoms — which aren't always clear, Barry-Tanner said.
One of the projects the ADRC of Brown County and the local dementia organization Forget Me Not are doing is giving caregivers cards that notify staff members that someone in their store has dementia, Nolan said.
Nolan emphasized that this training brings to the forefront the important lesson that every person, regardless of a dementia diagnosis, deserves to be treated with care.
"To tell you the truth, someone with mental health issues, someone with Down Syndrome, any other disability, the approaches we teach are good no matter what," Nolan said. "You don't need to be able to say for sure that someone has dementia. This training's good for lots of different people."
The training goes beyond being able to identify signs and symptoms. It's about "changing the thought pattern," Barry-Tanner said. If a staff member at a store is working with someone who has dementia, instead of asking, "How can I control this situation?" Barry-Tanner suggests asking, "How can I accommodate this person?"
An analogy Barry-Tanner often cites is the environment that led to the Americans with Disabilities Act. Disability activists created a cultural shift in mainstream understandings of disabilities, Barry-Tanner said, but before then, people with disabilities struggled with their physical environments, which often didn't accommodate their needs.
Changing the landscape for people who struggle with brain diseases, Barry-Tanner argues, is just as important.
The training, available in both English and Spanish, covers everything from the most conducive physical environment for people with dementia to how to respond if someone with dementia takes something that doesn't belong to them. There's also training on how to interact with someone who appears lost in the store.
"The training is intentionally a half-hour long to make it more feasible for businesses," Barry-Tanner said. "In a nutshell, the training is about what's going in the country, why this (training) can be helpful in the business setting, how do they notice the symptoms and how do they respond in a way that will make the customer feel comfortable."
Lion's Mouth first business to receive focused Purple Angel training through the new initiative
Lion's Mouth is one of the 10 businesses so far that have signed on to receiving focused Purple Angel training through this new initiative. The coalition spent about a half-hour with the bookstore just before Christmas, training the staff on best practices for people with dementia and caregivers of people with dementia.
The training offered invaluable resources to the whole staff, said Jordan Leon, events and social media coordinator at Lion's Mouth.
"We're now prepared to welcome and assist community members with dementia and ensure we can provide a safe, comfortable experience for them here at Lion's Mouth," Leon said.
For Lion's Mouth Books owner Amy Mazzariello, meeting the needs of the elderly population is far from new. Mazzariello's husband has cared for the elderly for more than 15 years, and it's already "part of our world." So when Barry-Tanner came to her with the idea of her and her staff getting dementia-friendly training, their involvement was a "no-brainer."
It's important, she said, to treat every customer who comes into the bookstore with "dignity, patience and guidance."
"Anything we can do to make people more comfortable, we're all about that at the bookstore," Mazzariello said.
Which Green Bay businesses have signed on to get Purple Angel-trained?
Anchor Coffee, 401 N. Washington St.
Waterfront Market, 401 N. Washington St.
Hagemeister Park, 325 N. Washington St.
Lion's Mouth Bookstore, 211 N. Washington St.
Furs & Clothing of Distinction, 207 N. Washington St.
LoCo WisCo, 112 N. Washington St.
Meyer Theatre, 117 S. Washington St.
Quality Inn & Suites, 321 S. Washington St.
NeighborWorks Green Bay, 437 S. Jackson St.
The Attic, 730 Bodart St.
Dementia Friends helps neighbors better care for each other
Kayla Branam, president of the Navarino Neighborhood Association, has seen firsthand the power that comes with accommodating people living with dementia. Before one of her neighbors moved to a long-term facility, Branam would see him go on walks with a tracking device set up on his phone that linked his whereabouts to his wife.
It helped, too, that neighbors understood his condition and could identify whether it appeared he was experiencing confusion or moments of clarity.
"When people get diagnoses of dementia or Alzheimer's, it really ends up isolating them because of their inability to function on their own without a caregiver, and also people just not knowing how to care for them or interact with them," Branam said.
Branam sees Navarino as a perfect community to jumpstart the dementia-friendly neighborhoods initiative. She said she'd been inspired by the accomplishments of Schmitt Park Neighborhood Association, which set the stage as the first dementia-friendly neighborhood of its kind in Green Bay.
Dementia Friends, which the United Kingdom-based Alzheimer's Society developed in 2013, was designed to help communities respond to people with dementia. Its ambassadors work to educate and equip members of the community with simple approaches to help make a difference in the lives of people with dementia.
"I approach being a Dementia Friend the same way I approach being a good neighbor in my neighborhood … Things like paying attention to see if people have consistently been putting their garbage and recycling out or going a few feet more with the snow blower to ensure that the houses around us are taken care of and people have easy access to our sidewalks," said Kapalczynski, who is also a Navarino resident.
Once neighbors go through training, they can display yard signs stating, "We Are Dementia-Friendly." To Branam, this effort has the benefit of making people with dementia feel less isolated and stigmatized.
"Say somebody gets a diagnosis of Alzheimer's. Maybe they see my house and think, 'Hey, Kayla has this yard sign and she is aware of dementia. Maybe I can talk to her about my diagnosis so she's aware of what's going on with me,'" Branam said.
Neighbors in the Navarino and Downtown area will also have an opportunity to learn more about becoming Dementia Friends. Branam will be sending invitations to residents about an upcoming information session taking place from 5 to 7:30 p.m. on Jan. 25 at Grounded Cafe, 300 S. Adams St.
The focus right now is on Navarino and Downtown neighborhoods, but anybody can come to the session to learn more, Barry-Tanner said. The hope, Barry-Tanner said, is to move from neighborhood to neighborhood, to continue broadening the training scope.
"The need is there," Barry-Tanner said. "These training experiences give us knowledge and understanding. They enable a comfort level, both on the side of the family that is dealing with dementia, and within the business side. It's a win-win situation."
Natalie Eilbert covers mental health issues for USA TODAY NETWORK-Wisconsin. She welcomes story tips and feedback. You can reach her at neilbert@gannett.com or view her Twitter profile at @natalie_eilbert. If you or someone you know is dealing with suicidal thoughts, call the National Suicide Prevention Lifeline at 988 or text "Hopeline" to the National Crisis Text Line at 741-741.
This article originally appeared on Green Bay Press-Gazette: Green Bay dementia-friendly initiative pushes for awareness, education
