Ali Brems’ Grandma Rose was the artistic one, the one who loved to paint and play chicken foot dominoes. She had so many antiques in her always neat house that her grandkids were afraid to sit down. Grandma Decca (who her sons nicknamed after a French prison warden) was the fun one, who promised to take her grandkids gambling on a Mississippi River boat and who’d dust flour on the floors at Easter, so the kids could see the Easter bunny’s footprints.
Rose Lee, 83, and Jeanette “Decca” Brems, 73, don’t recognize Ali anymore. Both have Alzheimer’s disease and live in assisted-living facilities in Illinois.
While she cannot restore her grandmother’s memories, Ali Brems, a Kenosha, Wisconsin, 18-year-old, wants to help ensure other granddaughters won’t face the same loss. Inspired by an intensive high school course on Alzheimer’s disease that included pairing high school seniors with nursing home seniors, Brems decided to host a Bingo fundraiser for Alzheimer’s disease research as her senior project.
The evening raised $1,000 for the Wisconsin Alzheimer’s Disease Research Center (ADRC) at the University of Wisconsin School of Medicine and Public Health. The center focuses on identifying early biological markers in adult children of Alzheimer’s disease patients, clarifying risk factors and investigating new preventions and treatments for the disease, which affects 5.4 million Americans, a number that is expected to increase dramatically as Baby Boomers age. She also gave $1,800 to a local non-profit Alzheimer’s facility.
Brems’ gift will be used to screen older adults in senior centers who might not have family members who notice when memories are slipping, ADRC Administrator Carey Gleason said. Private support is especially welcome as National Institutes of Health (NIH) grants become more competitive, she said. In 2002, the NIH funded 30 percent of grant requests in aging; in 2010, it funded about 8 percent.
“How do we start new projects and chase innovative ideas?” Gleason asked. “That’s when we go to outside sources.”
Brems made her gift to the UW-Madison ADRC because she wanted to see where the money would go instead of sending it out of state. She and her mother, Lori, had a chance to do just that during a center tour that took them from the brain imaging lab to the brain bank. “It was awesome to see where the money is going,” Ali Brems said. “I learned my teachers really taught us a lot of important stuff.”
“Most people your age are doing other things,” Asthana told her. “Efforts like yours are absolutely exceptional. Every cent of every dollar counts; we use it for the good of patients and of research. We are so grateful.”
Brems is a member of the first graduating class from Harborside Academy, a charter school that includes a strong community service component. She discovered the idea for a fundraising Bingo game online, only advertised it by word of mouth and Facebook and expected about 20 people.
When 200 children, parents, teens and grandparents showed up, she worried she wouldn’t have enough tables. She’s hosting a second fundraiser May 24, a Go Purple softball game to Strike Out Alzheimer’s. She hopes for a crowd for the rivalry game between Kenosha Bradford (the team Brems pitches for) and Kenosha Tremper.
“I know I look like one person, but a lot of people helped me (organize the fundraisers),” Brems said.
“She’s an old soul,” Lori Brems said of her daughter. Competitive on the softball field, Ali Brems’ caring side comes out in her volunteer work, which has included collecting soup for the homeless and selling T-shirts for Darfur.
Lori Brems watched her grandfather, aunt and now mother and mother-in-law struggle with Alzheimer’s disease. She remembers the pain of hearing her grandfather cry when he knew he was losing his mind. “In our family’s case, the grandmas were the healthy ones, but now they have no mind,” she said.
Grandma Rose has moments of lucidity but mostly has retreated into an often wary silence. Grandma Decca has no memory but greets visitors with a cheery, “Hey, Baby.”
“Once they don’t know what’s going on, you have to change your expectations of your mom or your dad,” Lori Brems said, adding she’s happy now if her mom looks at her. She encourages families to talk about what will happen if Alzheimer’s disease strikes. She has told her children they don’t need to visit her from any sense of obligation. Her husband jokes that he wants to be dressed up in funny clothes and taken to the mall.
“It’s sad that so much money for Alzheimer’s (research) isn’t there anymore,” Lori Brems said. “It’s an up and coming disease, but unless you’re affected, you don’t know how much it affects your family. I think it’s something people need to be aware of. It can affect everyone.”
For her part, Ali Brems tries to explain to others that there are no survivors of Alzheimer’s disease, and there is no cure. She’s planning to host another Go Purple softball game this summer before she starts at Lewis University in Romeoville, Illinois. She expects to host another Bingo fundraiser next year and will look for community service projects once she’s settled into college. “I’ve always been a believer that the way to truly live is to help others,” she said.
The 2-year-old UW-Madison ADRC, also called the Wisconsin Comprehensive Memory Program, is one of 17 centers across the county. It is the first geriatrics-based center and is unique in its knowledge about adult children of Alzheimer’s disease patients, outreach specialist Kari Paterson said. Open studies that track healthy at-risk adults, Alzheimer’s disease patients and healthy adults are the core of the center’s effort to prevent or delay the onset of the disease.
“The center is committed to detecting the disease when a person has no symptoms with the hope that one day we’ll find an effective treatment that will stop the disease right there,” said Dr. Sanjay Asthana, ADRC director.
The center also is known for its work in looking at how the risks for cardiovascular disease, including high blood pressure and high cholesterol, contribute to Alzheimer’s disease, Gleason said. Researchers are especially looking at whether cholesterol-lowering medications will reduce the risk of developing the disease in humans.