(First published in the June 20, 2019 issue of City Pages)
JoAnn Janikowski is part of a local effort to reduce the stigma of Alzheimer’s and to help families deal with the disease
People aren’t ashamed if they or a loved one experience kidney failure, diabetes, back problems or a bum knee. The same isn’t always true if the disease is Alzheimer’s and the system at risk is the brain.
Earlier this year, JoAnn Janikowski of the local chapter of the Alzheimer’s Association set up informational meetings throughout area communities for people to learn more about the disease and how best to care for those who have it. Members of one family grappling with Alzheimer’s told her they wanted to attend, just not in their hometown. They chose to drive to another county, figuring there’d be less chance of being recognized.
One person reacted to a request to be interviewed for this story with a comment that it would be OK only if there would be no identifying information. A local woman who talked freely at one of these meetings with an acquaintance about her mother’s Alzheimer’s did not respond to a request for this story.
At the Aging and Disability Resource Center (ADRC) office in Wausau, Meagan Fandrey has seen similar attitudes. “Nobody wants to admit that they are losing mental abilities,” she says. As a caregiver support coordinator at the agency, she says, “There is something different talking about Alzheimer’s, something different socially. There is a lot of ‘not talking’ going on.”
The U.S. Centers for Disease Control and Prevention (CDC) says Alzheimer’s is the most common cause of dementia. Dementia, in turn, is a loss of memory and thinking skills severe enough to interfere with everyday living. The brain shrinks as nerve cells die.
The CDC says the first sign of Alzheimer’s can be a mild memory loss that makes it tough to carry on a conversation or respond to what’s happening around you. Parts of the brain that control thought, memory and language don’t work as they should. In the end stages of the disease, a person gradually loses the ability to move and eventually is unable to swallow.
Janikowski’s mission is to spur discussion about what she says has become the sixth leading cause of death in Wisconsin. The Badger State has 110,000 people living with Alzheimer’s and the count nationwide is 5.7 million, according to association statistics.
One big concern for people like Janikowski and Fandrey is that for the 110,000 Wisconsinites with the disease, there are 194,000 unpaid people with some responsibility for their care. That responsibility can be a heavy one, but can be easier if the caregiver has a better understanding of what’s happening medically.
With an aging population, prospects aren’t going to get any better. The association estimates that barring medical progress toward finding a preventive measure of some kind, there will be nearly 14 million Americans living with Alzheimer’s by 2050.
A few decades ago, Alzheimer’s disease was not a familiar term. It is now. From 2010 to 2017, while deaths from heart attacks were becoming 9% less frequent, deaths from Alzheimer’s increased 145%.
It doesn’t always affect just the very elderly. The Alzheimer’s Association figures 200,000 Americans younger than age 65 now have the disease.
The risk that a 65-year-old will be diagnosed with the disease doubles by the time he or she is 70. Then it doubles again when that person hits 75 and the increases go from there.
Janikowski says it would be great if the first part of the association’s mission could be achieved, eliminating the disease through research. Until then, she and her three fellow educators in the northern region of the state are spread thin as they work to provide support and care for those affected and to reduce risk through the promotion of brain health.
Knowing the paid Alzheimer’s Association staffers won’t be able to reach as many people as they’d like, Janikowski is working with Fandrey and the ADRC to build a group of trained volunteers who can help educate as many people as possible about the disease, which has no known cause. Age is a risk factor, as is family history. The CDC says more evidence is turning up that risk factors for heart disease might also increase the risk of developing Alzheimer’s disease.
Right now, though, Alzheimer’s can’t be prevented, it can’t be cured. That’s why community programs are focused on helping caregivers, family members and those afflicted cope better.
What loved ones and caregivers need to know
One big concern for people like Meagan Fandrey are the thousands of people who care for someone with Alzheimer’s. That responsibility can be a heavy one, but is easier if the caregiver understands what’s happening medically
At a spring informational meeting in Wausau, the small crowd could be another sign that people are not willing to open up about dementia in front of strangers. Janikowski says that’s a shame, especially for family members and people the association calls “care partners.” She says, “The more people share, the more they feel they’re not alone.”
Lee Shipway, a local counselor, facilitated the meeting, opening with a story of her own. Her grandmother had Alzheimer’s in the 1960s and diagnosis took a long time. From personal experience, she says, “I’ve known a lot about Alzheimer’s. It is a very debilitating form of dementia.”
One attendee, Joanne Leonard, says after her mother got her diagnosis, she and her sister for 12 years have participated in a longitudinal study of whether Alzheimer’s is hereditary. “Basically, people are afraid of it,” Leonard says. “How long am I going to be able to keep track of things. We all compare, what words have we forgotten, what things we’ve messed up on our calendars.”
After establishing that most of the attendees were involved in providing care for someone with Alzheimer’s, Janikowski asked whether the frequent medical appointments forced them to use vacation time from work to transport that person.
The groans in the room said it all.
Fandrey, who talks with caregivers daily, says families of Alzheimer’s patients experience challenges that differ from situations where someone has other age-related health issues. For example, two-thirds of people with Alzheimer’s are women, which leaves many men in the unfamiliar role of caregiver. Part of her job at the ADRC is to help those men.
Bonnie Marshall of Weston, another attendee at this spring meeting, needed to learn a lot about Alzheimer’s. It impacted her father before he died; now her mom, who is in assisted living, is starting to show signs. Her parents’ transition from living at home independently, to living at home with caregiver visits, to then moving to assisted living has been “very, very difficult,” she says.
Joining a group formed at North Central Health Care Center has helped, Marshall says: “It was very eye-opening.”
One of the things she learned is that when someone with Alzheimer’s is confused and says something incorrect, consider whether it’s important. Does it matter if say it’s Saturday when it’s actually Monday? If not, don’t correct them. Nobody likes frequent reminders they’re getting things wrong.
That’s one of the things the founders of the Memory Café had to learn when they began holding their events at the First United Methodist Church in Wausau (10:30 am on the third Thursday of each month). Memory Café is for people in the early to middle stages of dementia, whether that dementia is Alzheimer’s or some other sort.
Charlie and Maggie Schoenfeld point out that the Memory Café, which usually attracts 20 to 30 people, is also for those in the care partner role. Involved from the start, they say, “Memory Café is not a drop-off program.” The care partner often benefits as much from the get-togethers as the person with the disease. Participants learn from each other the best ways to handle certain behaviors or problems.
Maggie says one of her favorite parts, even if it consumes a good chunk of the first half-hour, is the “Hello song.” It’s repeated for everybody there, she says, and when people light up as their name is sung, “It’s the warmest feeling ever.”
Charlie says a person’s life does not have to stop if they get Alzheimer’s. “If you’re in choir, you can continue.” Explaining the need for the Memory Café, he says for those with the disease, “Your world starts shrinking. We’re about trying to bring a little of that back.”
What the dozen or so volunteers need to remember, he says, is, “You have to go to their world. They can’t come to yours.”
Fandrey, at the ADRC, puts that another way, “Don’t feel you need to correct them or bring them to your reality. Realize that their reality is their truth. To not correct is very challenging, but it’s recommended for a better outcome.”
Charlie Schoenfeld says another tip he passes on: Avoid asking the person with Alzheimer’s if they can remember this or that. When they can’t, it’s just another reminder of their loss of mental faculties. Another tip: If you need to repeat something for the person with Alzheimer’s, don’t try stating it a differently. Say it exactly the way you did the first time.
It’s also important to remember that someone with Alzheimer’s still has feelings and pride like anyone else. Maggie says a person’s desire to make some decisions themselves doesn’t go away with the onset of dementia. “Give them the dignity of a choice,” she says.
The Schoenfelds have learned that when walking in a building, a person with Alzheimer’s might show reluctance to step from one color flooring to another. Businesses that make an effort to be “dementia friendly” know that to someone with Alzheimer’s, a dark floor mat— like those typically in entryways— can appear to be a rectangular hole in the floor.
And wandering can be a problem, Charlie says. “They’ll start walking and they don’t know where they’re going.”
A primary goal of Memory Café is to foster personal interactions, and the volunteers learned early on to always approach a person with Alzheimer’s from the front. A side-effect of the disease is a narrower field of vision. If you can only see things right in front of you, something coming from the side can be startling.
Simple screening is just a start
The ADRC is an agency the Schoenfelds and Janikowski are familiar with. Among the offerings are brief cognition screenings. Jenny Pagel, a resource specialist, says the key word is “screening.” The tests are not diagnostic, but with the tested person’s permission she will pass the results on to the individual’s doctor. Pagel says doctors know quickly whether to take a closer look.
The screening takes only a few minutes but is a proven indicator of whether mental sharpness is declining. A file is created for each person screened, so if they come in a number of years later for a second screening, the ADRC can see any changes.
Pagel says it’s OK to describe the test here, in a news story. Because even if a person with some dementia knows that the first test will be to name as many animals as possible in one minute, he or she won’t be able to do better with practice. If someone can’t name 14 animals, Pagel’s letter to the doctor will suggest a follow-up. One person tested recently went blank after naming three animals.
The next test is a little tricky. Pagel reads three unrelated words and asks to have the words repeated back to her. Simple enough, but then she hands the person a blank sheet of paper with instructions to draw a clock with all the numbers around the circle (some can’t manage that) and then draw in the hands of the clock so they show a certain time.
“It’s pretty amazing what you see,” Pagel says about various results over the years before circling back to ask me about that list of three words—which wasn’t so easy after the intervening conversation. (Two out of three is still pretty good, right?)
She has to make sure even this relatively simple screening is culturally sensitive. Older Southeast Asian people who don’t have great English skills would be at a disadvantage, she says, because their native language doesn’t have as many names for different species of animals.
Pagel warns that a poor or marginal result isn’t conclusive. “There needs to be a conversation with these. This does not mean you have Alzheimer’s.”
Fandrey agrees, saying, “There are so many other things that could be going on here.”
For those thinking there must be someplace on the internet where a concerned person could do his or her own screening, Fandrey says she knows of no reliable testing that can be done online.
Dr. Rick Reding at the Aspirus Memory Clinic agrees with the ADRC staffers who say the screening is just a starting point. To people who are concerned about someone, he says, “These folks really need to be seen by a doctor. Not all problems are dementia.”
Reding also has seen the stigma with dementia. “I think it’s getting better, but there is still that feeling, especially in the older population, that ‘You think I’m crazy.’” He tells them, “No, It’s a medical condition.”
There are no dietary supplements that stave off Alzheimer’s, he says, but there is a “mind diet” that helps some with dementia. One researcher who spoke at a conference he attended told him that with proper lifestyle changes, 25% of Alzheimer’s cases are preventable.
Though that holds some promise for the future, those with loved ones now dealing with Alzheimer’s can get help from the Alzheimer’s Association at 715-803-6779 or the ADRC at 715-261-6062 where Fandrey offers the Alzheimer’s Family Caregiver Support Program.
A way in through art
Since 2010, specially trained volunteers at the Leigh Yawkey Woodson Art Museum have offered SPARK! events on the second Thursday of each month. People with early to mid-stage memory loss, with a friend or care partner gather at the museum for an experience that has a planned beginning, but nobody really knows how it’s going to wrap up.
The museum’s curator of education, Lisa Hoffman, says when she describes the program for volunteers who are primarily responsible for its success, “I always say it’s very improvisational. You have to follow the path the conversation takes.”
SPARK! runs from 10:30 am to noon to be consistent with the Memory Café. The first hour is where the improvisation begins. They focus on three or four works in the current exhibition. That leads to 15 minutes of storytelling involving the participants and the finish is a half-hour on a hands-on art project. They’ve done three-dimensional tin-foil birds, watercolor pencils, still lifes and yarn painting using various colors of yarn stuck to the back side of self-adhesive vinyl flooring.
As important as the art itself, Hoffman says, is the opportunity to be in a cultural setting and engage in a social event. The conversation and enriching experience are important for the care partners as well as for the person with the memory loss.
Hoffman says she was recently in a phone conversation with one of those care partners, a family member, who said, “Dad isn’t sure why he’s going to the museum, but he wants to make sure he is going every month.”
Those interested in participating are asked to register at 715-845-7010. If staff at a nursing home or care facility want to schedule their own visit with a similar experience, they are asked to set it up three weeks in advance.
Other facts about Alzheimer’s and dementia
Ethnicity is factor — Compared to Caucasians, Hispanics are 1.5 more likely to develop the disease and African-Americans are twice as likely, according to the Alzheimer’s Association.
June is Alzheimer’s & Brain Awareness Month, an opportunity to hold a conversation about the brain, and share the fact that Alzheimer’s disease and other dementias are a major public health issue. Everyone is at risk to develop Alzheimer’s, the only leading cause of death that cannot be prevented, cured or even slowed, according to Aspirus Memory Clinic Dr. Rick Reding.
An estimated 44 million people are living with Alzheimer’s and dementia.
Most people display the first signs when they’re in their mid-60s, Reding says. Those symptoms can include getting lost in familiar places or losing track of the day or year.
Take care of your body. Most anything a middle-aged or older adult would do for better health also takes better care of the brain. Growing research suggest the certain habits can help your brain stay young:
• Exercise your body, and your brain by taking a class of some kind, and challenge yourself with a jigsaw puzzle or games that involve strategy
• Socialize, and get enough quality sleep
• Eat a diet that’s good for the heart – less fat and more fruit and vegetables.
• Do not smoke.
• Reduce your risk of brain injury that can lead to cognitive decline. Always wear seat belts and wear a helmet during vigorous activities.