Chances are, you probably know someone with Alzheimer’s disease, the most common cause of dementia for older adults, even if you’re not aware of it. It is estimated that 5.7 million Americans have been diagnosed with Alzheimer’s disease, making it one of the top 10 causes of death in the United States. In Illinois, the situation is even starker — as of 2016, an estimated 220,000 people were living with Alzheimer’s in Illinois, making it the sixth leading cause of death in the state. To make matters worse, it is the only disease in the top 10 causes of death that has no cure or preventative measures.
That’s why the Illinois chapter of Women United Against Alzheimer’s of the Alzheimer’s Association is hard at work — the dedicated members of the organization are trying to shine a light on how dire the situation is when someone is diagnosed with Alzheimer’s.
Board member Aimee Nolan got involved with the Alzheimer’s Association after her mother was diagnosed with the disease at just 55 years old. As Nolan watched her mother deteriorate and her father struggle to care for her, she realized how much she didn’t know about the disease. After her mother died in 2013, Nolan took some time to gather her thoughts and heal before she decided to officially become involved with the Alzheimer’s Association.
“I knew at some point I wanted to get more involved in whatever capacity I could to find a cure,” Nolan says.
Nolan had her chance early last year when the Illinois chapter of the Alzheimer’s Association convened a task force of women with the goal to evaluate and recommend a course of action for what a female-led initiative might look like. Nolan applied to be one of the members and was later asked to chair the entire initiative and join the board as well. The group, Illinois Women United Against Alzheimer’s, officially kicked off the first week of November 2017.
“The whole goal of the initiative is to bring like-minded women together for networking, educational purposes, to raise awareness and work together to find a cure to end Alzheimer’s,” Nolan says.
In addition to newsletter campaigns that offer updates on policy and research as well as fun philanthropic activities, the Illinois Women’s coalition will be holding their first celebration gala on June 10.
“It’s called The Power of Purple and that will be our first signature, celebration event,” Nolan says. “It’s a fundraiser but it’s also an opportunity for our guests to hear some fantastic speakers, and the theme is ‘garden party.’”
One of the speakers will be Elizabeth Gelfand Stearns, chair of The Judy Fund and co-producer of the movie “Still Alice.” Heather Snyder, senior director of medical and scientific relations for the Alzheimer’s Association, will also be speaking. Judy Hsu of Channel 7 News will help emcee.
Sheri Supena, one of the co-chairs of the event, says she’s incredibly excited about what the women hope will ultimately be their annual signature event.
“I’m just excited to get together with other women to hear their stories, to hear the speakers, and we’re doing an auction so that will be fun,” Supena says. “It’s the first time I’ve planned an event like this so I think the whole thing’s going to be exciting.”
Supena was thrust into the sad and scary world of Alzheimer’s disease when her mother was diagnosed a few years ago. After taking her father to a single support group for caregivers, Supena realized that the community provided by the organization was exactly what she needed to negotiate the scary — and oftentimes infuriating — waters of Alzheimer’s.
“I was getting really frustrated with navigating the healthcare industry, and I figured I had a lot of business skills that I could use that I could give back,” Supena says. “I didn’t want other families to have to go through the troubles and hassles that we were going through.”
She has been on the board of directors for the Illinois chapter since 2011, driven by her desire to make the process even just a little easier for someone else.
“This journey is so, so hard,” Supena says. “As a business person, I assumed people in the healthcare and medical industry knew how to deal with Alzheimer’s, and while they understood what was going on in the brain, they didn’t understand the behaviors.”
One of the hardest parts about Alzheimer’s is that its victims revert to a childlike state — they lose the ability to speak and walk, they have reduced inhibitions and little to no patience. After seeing the nursing home try and keep her still-active mother in a wheelchair, Supena knew she needed an outlet.
“I got so frustrated, but the Alzheimer’s Association has these support groups, they have a help line, they have programs to help people with early diagnosis,” Supena says. “It all mirrors my goal to make it a little easier for somebody else … people think it’s just a memory problem and it’s so much more.”
Supena encouraged her now co-chair, Debra Zabloudil, to get involved with the organization after both of their mothers were diagnosed with the disease. Once best friends and part of a singing group, Sheri and Debra reconnected as they watched their mothers, formerly vibrant women, waste away from a disease that has no cure.
Zabloudil also found herself at wit’s end trying to navigate the healthcare system as she tried to get care for her mother, an experience that further pushed her to get involved with the Alzheimer’s Association.
“There’s not a safety net within the healthcare system for [Alzheimer’s],” Zabloudil says. “If you have heart disease, you get everything you need [like] hospitalization, surgery, but with Alzheimer’s … if you need to go to a facility, it’s not covered by Medicare or insurance and you have to be destitute financially before you can be qualified for Medicaid and that is a long, arduous process.”
Zabloudil says she finds herself worrying about other families who are facing down an early-onset diagnosis, knowing what a financial strain it will be.
“It’s a very scary reality when someone is diagnosed, especially young and they have a lot of years of their life left,” Zabloudil says. “It really wipes a family out financially, and there’s no fix.”
In addition to the financial strain on a family, Zabloudil says that caregiving can be equally stressful, and that’s something she loves about the organization — it works to help the caregivers, who are often women.
“In many cases, the disease falls on women’s shoulders, both as caregivers and as the primary victims of Alzheimer’s,” she says. “It spoke to me because I was going through a really difficult time when my mom had the disease, helping not only the patient but also the family because it’s such a tough journey and a lonely one.”
Recent statistics show that nearly two-thirds of Americans with Alzheimer’s are women, and 65 percent of caregivers of people with Alzheimer’s are women. On the whole, almost 13 million women are either living with or caring for someone with the disease.
Nolan, Supena, and Zabloudil are hopeful that the Power of Purple event will help shine a light on the unique plight of women within the world of Alzheimer’s. One of the reasons they all became involved with the Illinois Women’s chapter was because they felt such a strong connection to other women who were going through the same experiences.
“There are just amazing stories of women caring for other women,” Nolan says. “My mother’s caregiver was her mother, and to see the toll it took on my grandmother caring for her own daughter … 10 days after my mother passed my grandmother passed, because her job was done. She made sure she was a fighter until the end and then she moved on.
“The stories of people going through this makes you realize if you we could do something to change the trajectory for this disease it could really do something for society.”
For more information or to buy tickets to the Power of Purple Garden Party luncheon on Sunday, June 10 at Galleria Marchetti in Chicago, please contact Katie Lane at [email protected] or at 847-324-0359, or visit ILALZWomen.org.
Want to read more?
If you or a loved one has been affected by Alzheimer’s, or if you’d like to learn more about how to prevent or deal with the disease, check out these expert tips.
To boost your memory and brain power and help protect your brain from Alzheimer’s, start eating these nine powerhouse foods proven to support brain health.
Jessica Suss is a native Chicagoan residing in Washington, D.C. She is currently getting her master’s degree in secondary English education at the University of Maryland. She enjoys petting other people’s dogs and is faithful to Lou Malnati’s alone. Jessica is also a supporter of MAZON and No Kid Hungry.