Fighting Dementia In Butler County

By Laura Fitzgerald

Miami University journalism student

In January 2012, *Kate was home making dinner when she got a call. Her husband had a stroke at work. He was 59. When she got to University of Cincinnati’s hospital, she found him lying in a hospital bed, the left side of his face drooping.

"I just didn’t know how bad it was when I saw his face dropping down I was like what is all this going to lead to?" Kates says. "What does this mean?"

She says she thought he would bounce back from it, as he had other things in the past. Her husband had always been an intelligent man, but he couldn’t solve simple elementary school problems in therapy after the stroke.

He forgot things. He would get up in the middle of the night to shower and do other things that didn’t make sense.

The stroke affected the executive functions of his brain and his memory. Kate’s husband has amyloid angiopathy, a condition in which proteins, called amyloids, build up on the walls of blood vessels in the brain. While it can be harmless, it can also cause strokes.

Although Kate didn’t realize it at the time, he had vascular dementia from the moment of his stroke.

"You think they’re going to get better then they don’t get better and then somebody said to me, 'Well maybe you need to go to a dementia support group,'" Kate says. "And I thought, 'Well that makes sense.'"

The Science Of Dementia

Kate’s story is just one of thousands in Butler County. According to the Centers for Disease Control, 12.7 percent of Medicare beneficiaries in Butler County have Alzheimer’s and/or dementia. That is compared to 10.3 percent nationally.

Currently, about 5.5 million adults are diagnosed with Alzheimer's, and that number could rise to 16 billion by 2020, according to the Alzheimer's Association. However, dementia rates in adults over 65 fell by 24 percent from 2000 to 2012, according to a 2017 study from JAMA Internal Medicine.

Dementia is an umbrella term for diseases that cause mental impairment severe enough to interfere with everyday life. While symptoms of dementia vary greatly, they could include problems with memory, communication and language, the ability to concentrate, reasoning and judgement, and visual perception.

Alzheimer’s accounts for 60 to 80 percent of all cases, while vascular dementia is the second most common, according to the Alzheimer’s Association.

Dementia is caused by damage to brain cells, called neurons. The damaged cells can’t communicate as well, harming cognitive functions like memories, feelings, and reasoning. Alzheimer’s usually affects the cells in the hippocampus first, the center of memory and learning.

The brain literally shrivels up as brain cells die.

There is no cure.

A Community Responds

While nursing homes always remain an option for caring for dementia patients, adult day cares are one alternative. About 4,601 adult cay cares exist nationally today, a 35 percent increase from 2002, according to the National Adult Day Services Association.

Locally, the Oxford Senior’s Community Adult Day Service was created in 1997 under Mt Pleasant and Oxford Seniors took it over in 2000. It is housed in the basement of the Lutheran church on the edge of Miami's campus. Running 8 a.m. to 5 p.m. Monday through Friday, the day care gives caregivers a break and helps keep seniors home for as long as possible, Director Debbie Curry says.

Curry says day cares also allow for more personalized care than nursing homes because the ratio of staff to clients is lower in a day care than a nursing home.

If a client gets sick, for example, day care staff notice right away and can inform the senior’s family and doctor. Staff at a nursing home might not notice as quickly, Curry says. Day cares are also less expensive than nursing homes.

"I was a nurse for a long time in a nursing home and I’ll never go back," Curry says. "I mean they have their purpose, but this is so much better of an alternative if it’s feasible."

A typical day starts with picking seniors up in a big white van. Then there's coffee and conversation followed by physical and mental exercise in the morning. After lunch and a break, the clients do activities that range from graduate speech and hearing students hosting sing-alongs to walks around campus.

The goal is to exercise clients' minds and bodies daily, through activities that are entertaining and interactive.

"We try to have a lot of fun with them throughout the day," Curry says.

One activity that is both entertaining and interactive is art.

Dementia and Art

Miami University students gathered at the day care Curry runs on a Monday afternoon, all taking part in Opening Minds through Art (OMA).

In the program, a volunteers, often students, and senior citizens in nursing homes and day cares are paired up to complete an art project every week. This week's project: tie-dye rice paper.

After learning about the project, the volunteers approached their artists with smiles and questions, guiding them to a long plastic table. Each volunteer donned a paint-splattered apron and sat next to their artists’ dominant hand.

After a rendition of "You Are My Sunshine," the artists started dipping their paper in tie-dye and painting a canvas using paint sponges and bubble wrap. Volunteers gave their artists choices of paint, tie dye, and glitter color.

Volunteers and artists talked the whole time, asking about each other’s lives. One man told his volunteer about the places he’s lived. When the artists finished their work, the student leaders held it up for others to admire in a white frame.

"That’s cool, it looks like a galaxy," one of the volunteers said, admiring the artwork. Red, yellow, green, blue, and purple tie-dye bloomed across the page, covered with glitter and colorful paint.

The session ended with a rendition of "This Little Light of Mine," volunteers and artists clapping along.

Elizabeth Lokon, OMA Director, says the program has created over 100 projects. The projects must be failure free, meaning anyone can do the project, regardless of cognitive or physical ability.

Joan Fopma-Loy, OMA program manager, says students learn about their artist's needs and how to support them when they have the same artist every week.

Volunteers are never given their artist's diagnosis, Loy says. The program is open to everyone, not just dementia patients.

Opening Minds Through Art

Dr. Elizabeth "Like" Lokon created the program at Miami University’s Scripps Gerontology Center in 2007. Since then, Lokon says the program has been replicated in over 57 locations. Recently, OMA received funding from the Ohio Department of Medicaid to take the the program to 100 more nursing homes throughout Ohio.

Lokon says the arts improve physiological, mental and physical health, giving seniors a sense of accomplishment.

Rather than focusing on the skills that senior citizens, especially those with dementia, may have lost, art focuses on the skills they do have, such as creativity and the ability to form relationships.

"Art transcends language, memory and logical thinking. All of these things that are impaired by the disease are not needed when you do art," Lokon says.

Anne Marie Misey, outgoing president of Miami’s OMA club, says making choices in their art makes artists feel empowered when they may have lost the ability to make decisions in everyday life.

"Early on it’s really powerful when you see that the OMA artists feel empowered," Misey says. "When they make decisions and when they like how the art turns out."

OMA also gives students the opportunity to form intergenerational bonds, focus on something greater than themselves, and develop leadership and social skills, Lokon says.

"People with dementia, or older adults in general, can be great friends," Lokon says. "It teaches them [volunteers] how to pay attention deeply to another person who is not within their usual circle of friends."

The OMA program is open to anyone who wants to join, but most volunteers are students.

Brianne Safer, incoming OMA club president, is currently a student leader. She had *Mary as her artist last year as a volunteer.

Shafer says she enjoyed learning about Mary, even if Mary didn’t remember her.

"I learned all about her life and what she did growing up and her boyfriends and she was on the cheerleading team and what she likes to eat and stuff so that was really cool," Shafer says.

Safer struggled with depression that year, and Mary’s positivity lightened her day. One day, Safer says she was dealing with a lot in her personal life and was feeling especially down. Mary could sense something was wrong and couldn’t stop hugging her and cracking jokes.

"It’s one thing that I can count on every week, is leaving all of the drama and chaos and busyness of college life and go and devote an hour to someone who really needs that attention," Safer says. "It fills me up every week and honestly is the best part of my week."

Safer does not have Mary for an artist anymore, but she still sees her every week as a student leader.

While programs like OMA provide support for those living with dementia, caregivers need support as well.

A Changed Life

Since his stroke, Kate dresses her husband, bathes him, and cuts his food for him. He still eats and brushes his teeth on his own. The only place Kate's husband goes, besides the day care, is church every Sunday.

She copes by going to two support groups, one for dementia and one for general caregivers. The support groups allow her to bond with other people who are having similar experiences.

The adult day care also helps her take care of her husband.

"It’s like having a toddler is really kind of what it’s like," Kate says. "It just gives you a break where you’re not having to be with somebody and keep an eye on them all the time."

Her husband used to be good with his hands, working on home improvement projects with his wife. He built his own house in Indiana, with a little outside help. He is a father of two children, four grandchildren and one great-grandchild. He married Kate when they were 18 and went through college with her and two babies.

Kate says she plans to keep him home for as long as she can take care of him.

"It’s horrible. It’s not what you think your life’s going to be like." Kate says. "I mean I deal with it but it’s very depressing and sad. It’s very sad to see someone just lose their brain like that."

Photos: Photo 1 and 5: Volunteers and artists form a deep bond through OMA. Photo 2: Residing in the basement of the Lutheran Church, the day care saves money on rent to be able to run their program. Photo 2: The Oxford Senior's white van picks up seniors every morning for adult day care. Curry says that while the seniors may not specifically remember her, the van feels familiar to seniors. Photo 4: Each semester culminates in an art show at the community arts center so the artists can show their work to friends, family and the wider community. Photo 6 and 7: Seniors often unleash a sense of creativity they didn't know they had in their artwork. --Photos 1 and 5-7 used with the permission from Opening Minds through Art. Photos 2-4 by Laura Fitzgerald.

* Wishing to remain anonymous, Kate's name was changed.

* Mary's name was also changed to protect her privacy.