You don’t have to be a scientist, politician, or millionaire to make a big difference in the fight against Alzheimer’s. Talk to the women who are battling stigma, lobbying Congress to get more critical funding for research, and helping to make caregiving easier, and they all say the same thing: One person can make a difference. Discover how women are moving the needle, and how you can join in.
When someone is diagnosed with dementia, one of the main fears that come up is that others will treat that person—and his or her family—differently once they find out. So caregivers and affected people tend to clam up. “There’s a sense of family members protecting their own,” says Jill Lesser, president of the advocacy group Women Against Alzheimer’s. “It’s similar to what we used to see when people were diagnosed with cancer—there’s an enormous amount of fear or stigma.”
Changemaker: In 2013, when her husband was first diagnosed with dementia, Veronica Ives of Winona, MN, was very cautious about mentioning it to anyone. “I was afraid that other people were going to look down on him,” she says. “But being cautious about telling people is a burden in itself.”
Finally, she decided to just be open. Talking about it, she says, allows her to help people understand things like why her husband “eats funny; he doesn’t have traditional table manners” and why she takes him into the women’s restroom if there are no family facilities. People may give them strange looks, but she takes the time to educate them on what’s happening.
“It’s hard, but talking about it makes it more normal,” she says. “You can’t do anything about what you can’t talk about.”
Take Action: Talk. Use the words “Alzheimer’s” and “dementia.” The more people know about what it is and what it’s like to live with the disease, the more compassion they often have.
Dementia Friends, a program administered by Dementia Friendly America, has shown the big impact of a little conversation: After their short information sessions, people start seeing someone living with Alzheimer’s as brave, strong, and admirable rather than unapproachable and depressing, and some of the awkwardness, stigma, and isolation begins to dissolve.
If you’re not directly touched by Alzheimer’s and don’t have a story, you can still commit to doing one small thing to increase awareness. It can be as simple as telling another person what you’ve learned about Alzheimer’s or being more patient with someone who’s affected.
Currently there’s no cure for Alzheimer’s, and the only way to find one is to research what might prevent, slow, or treat it. Insufficient funding is one reason clinical trials aren’t discovering answers more quickly, but another missing piece is the lack of enough people to fill prevention and treatment studies, says Jessica Langbaum, Ph.D., principal investigator of the Alzheimer’s Prevention Registry. (It turns out that 80 percent of all research studies can’t find the participants they need.)
Changemaker: Sarah Boggan, 35, of Scottsdale, AZ, signed up for the Alzheimer’s Prevention Registry because her grandmother had the disease. She encouraged her mom to join too, and they were both selected for the same trial: “We went to the local Mayo Clinic for the day and had a blood draw and some cognitive testing.
Every two years we go back, and we actually look forward to going together. My son is 2, and I hope that future generations won’t need to worry about the disease.”
Take Action: Join the —they’ll send you an email with a list of prevention studies that might be right for you—or search the . Volunteering for a trial can involve anything from filling out an online survey to going to a study site. The key: You choose how involved you want to be.
It’s important to let lawmakers know you care, and you don’t need political experience to lobby successfully. In fact, they’re already listening: A bill called the CHANGE Act (Concentrating on High-Value Alzheimer’s Needs to Get to an End), introduced in both houses this past February, was designed to fight the disease on many fronts: removing barriers to certain potential treatments, supporting innovative approaches that assist with caregiving, and helping people access timely assessments and diagnoses.
Changemaker: mom and then for her dad, who had vascular dementia, as well as for her husband, who had early-onset dementia. “I didn’t want another family to go through what we did,” she says.
One day nearly a decade ago, while she was driving, it hit her—If we have a Breast Cancer Awareness fundraising stamp, why not an Alzheimer’s one? So she wrote to all the living presidents and first ladies “and every celebrity I could think of,” she says. “I wrote to every member of Congress three or four times,” plus every Alzheimer’s-related organization she could find.
Eventually she discovered Kathy Siggins, who was also advocating for the stamp. They joined forces and tirelessly kept at it, and the Alzheimer’s stamp, with proceeds going to research, was released last November. “We were regular people, but we had been affected and were passionate about lobbying to make something happen,” she says.
Take Action: Write to your senators and representatives and urge them to support the CHANGE Act. “When I speak to members of Congress and their staffs, you often hear them refer to a constituent who called or wrote,” says Lesser. “Lead with your story—you’re the best advocate if you bring personal experience to a situation.”
Also, check out the , which offers a guide to meeting with lawmakers, collecting support letters, and more.