Women Against Alzheimer’s Moves the Disease ‘Out of the Shadows’
Alzheimer’s is a transformative, thieving disease, robbing its targets of precious memories and much more and affecting women twice as often as men.
To focus more on the issues special to women when it comes to Alzheimer’s disease, US Against Alzheimer’s launched the Women Against Alzheimer’s Network in earnest about two years ago. (The organization also has networks focusing on other groups affected by the disease too, such as Latinas, researchers and clergy, for example.)
“Women fit into an interesting place when it comes to Alzheimer’s. Women make up the vast majority of Alzheimer’s patients and caregivers, but it’s not thought of as a women’s disease,” says Jill Lesser, a co-founder of Women Against Alzheimer’s, board member of the umbrella organization and whose mother has the disease. “Women are leaving jobs, taking on caring for Alzheimer’s while caring for children and it’s having a huge impact on family. It’s a broader impact that hasn’t been brought to light.”
The group coalesced by bringing together women leaders in lieu of a more grassroots effort with a goal of building the movement, thinking about advocacy around women’s issues and how to spur additional sex-based research. Of the 5 million Americans with Alzheimer’s, 3.4 million are women while 10.5 million women care for someone with Alzheimer’s – and 70 percent of those caregivers are unpaid.
A Subtle Shift in Awareness
Lesser says that in her personal view there has been some improvement over the last couple of years in Alzheimer’s awareness. “I think now that Alzheimer’s has now begun to affect every policymaker and leader around the world in some way, and it’s really having an impact on communities that there is a level of attention on Alzheimer’s globally that there has not been.” The national cost of Alzheimer’s has been pegged at $215 billion in 2014 with an expected rise to $1.2 trillion by 2050.
It’s helped that US Against Alzheimer’s founders George and Trish Vradenburg have rallied the cause across the nation and around the globe, as well as other well-known personalities such as legendary women’s basketball coach Pat Summitt, who is a founding member of Women Against Alzheimer’s and also suffers from the disease, and retired Supreme Court Justice Sandra Day O’Connor.
There is now a National Plan to Address Alzheimer’s Disease, which includes a goal to effectively treat and prevent the disease by 2025 and funding has increased, but “in general the pace of research and particular federal funding for Alzheimer’s is still woefully inadequate,” Lesser says, noting that cancer research is funded at about $5.5 billion and about $2 billion for heart disease but “we’re only seeing about ½ million for Alzheimer’s,” which is America’s 6th leading cause of death with heart disease and cancer taking the top two spots. “This is with no disrespect or lack of caring about these other diseases, but to those of use who have followed Alzheimer’s research and trials there are promising drugs but then they’re not successful when they get to human trials. The cure for every disease starts with basic research and we need that. Anyone can help by spreading the word.”
Spreading the Word
The group held its second annual “Out of the Shadows Summit” in September. The two-day conference included a Shadow Box Memory Project, inspired by the success and impact of the AIDS Memorial quilt and the shadow boxes outside of the rooms at the Sunrise Senior Living community where Lesser’s mother lives. Summit attendees created a shadow box in honor of a loved one for display at the summit dinner, each box capturing the story of an individual affected by Alzheimer’s. Women Against Alzheimer’s hopes to expand the project in 2015. The group is finalizing its goals for next year, but expect to see more network growth, a focus on clinical trials, caregivers and a global women’s summit in Europe.
Lesser says advocates for curing and preventing Alzheimer’s can sign up to be a member of US Against Alzheimer’s and Women Against Alzheimer’s and subscribe to the action alert. She added that more volunteers are need to participate in clinical trials, especially those who are not yet symptomatic but have Alzheimer’s in their family.
“A lot of time, you can get so far in the weeds of care giving that you feel like you don’t have time for advocacy or expression,” Lesser says. “We encourage people to advocate and participate whether it’s working on the shadowbox project or joining an advocacy mailing. We all want to find a cure.”