Maria Shriver on Alzheimer’s and Women: Hope Over Fear
Try to remember what you were doing a minute ago. Got it? Now wrap your brains around this: In the past minute, another American developed a fatal disease that will slowly erase the personality and a lifetime of memories. That person will either die with that disease or from it, because there is no cure. That disease is Alzheimer’s, and it’s a growing national epidemic.
Right now, Alzheimer’s disease is like an earthquake rumbling deep in the core of our society, and women are at its epicenter. Women are fully two-thirds of the people with Alzheimer’s. They are also 60 percent of the unpaid caregivers of loved ones who have it. In every way, Alzheimer’s is a mind-blowing disease -- not just for the people who get it, but for everyone around them.
Believe me, I know. When my father, Sargent Shriver, was diagnosed back in 2003, my mother, four brothers and I all felt we were entering a world that was confusing, dark and depressing. People just didn’t talk about Alzheimer’s when it hit their families. It was a diagnosis shrouded in shame, and there was little information and even less hope. That’s why today, I’m passionate about defeating it.
So on October 15th, I released The Shriver Report: A Woman’s Nation Takes Alzheimer’s, a groundbreaking effort produced in collaboration with the Alzheimer’s Association. It’s a comprehensive, multi-disciplinary snapshot of women as caregivers, breadwinners and people living with this disease. This is a follow-up to last year’s Shriver Report: A Woman’s Nation Changes Everything, which looked at the transformational change that has overtaken our country as women have become about half of all US workers, while still being our primary caregivers. We found that the way we are in America has changed, now that two-thirds of mothers are primary or co-breadwinners. Husbands and wives reported that they now regularly negotiate their schedules and their joint responsibilities. We saw that attitudes and behaviors are evolving, but our institutions have not kept up.
This year we’ve focused our Shriver Report on the Alzheimer’s epidemic as another tipping-point issue for American society, one that has the potential to shift the way we live yet again.
When we call it an epidemic, we’re not exaggerating. Next year the first of 78 million baby boomers turn 65, at the same time life expectancies are greater than they’ve ever been. That means the proportion of our population living long enough to need care is growing like crazy. As a result, more and more of us will have to care for more and more loved ones with Alzheimer’s. As a daughter of Alzheimer’s myself, I know firsthand that having a person with it in your family isn’t like dealing with any other kind of illness. The duration of the care required -- the financial cost and the emotional and physical stress and strain on the family -- are all much greater.
Our Report includes a landmark nationwide poll, which found that 27 percent of Americans have someone in their family with Alzheimer’s. We found that the profile of an average Alzheimer’s caregiver is a married woman about 50 years old, working full- or part-time, most likely looking after her mother. Most of these women provide a whopping 40-plus hours of Alzheimer’s care a week. Many of them are also looking after their children.
We also found that 56 percent of Americans overall know someone with the disease -- and 90 percent of people who know someone with Alzheimer’s said they were concerned that they or someone they know will develop the disease.
There’s plenty of reason for that concern. Today, half of women aged 85 have Alzheimer’s, but the number of people with Alzheimer’s is expected to triple over the next 40 years. At the same time, we don’t have a corresponding boom in caregivers. We don’t have an infrastructure of professional caregivers trained for Alzheimer’s. Neither do we have a business community ready to provide the workplace flexibility needed by our unpaid family caregivers who also hold down jobs.
We certainly don’t have the financial resources to cover Medicare, Medicaid or the financial hit to families unprepared for long-term care expenses. The new economic analysis in our report concludes that Alzheimer’s is costing our society $300 billion a year. That’s $56,800 per patient -- the lion’s share of it, 60 percent, borne by families. That’s why a significant majority of caregiving families -- 56 percent -- report a real financial strain as a result of this disease.
Those are the numbers. The real story of Alzheimer’s can be found in the faces and stories of the women who have Alzheimer’s or are caring for loved ones with the disease. Our Report includes many unflinchingly honest personal essays -- by women with early-onset Alzheimer’s, by teenagers taking care of parents and grandparents with the disease, by women watching loved ones disappear slowly before their eyes, by men whose inner core is shaken when the women in their lives are taken from them by this disease. Contributors include everyday Americans, but also cultural leaders and celebrities struggling with the disease in their own families.
We hear from Mary Ann Becklenberg, diagnosed with Alzheimer’s three years ago at age 62. She says her husband knew something was seriously wrong when they got home from vacation and she said, "I really had a great time in California. I'm so sorry you couldn't make it."
We hear Rosalie Ingrande Asaro, whose husband Ben was diagnosed at the age of 84. She describes the pain and the tears, the cold rejection you feel caring for a loved one who doesn’t know who you are. She describes the harrowing times when Ben was “resistant and belligerent . . . agitated and disoriented.” She recounts the gut-wrenching day she accused him of “slowly killing me with his Alzheimer’s” -- and then her guilt and helplessness when she felt forced to admit Ben to a paid board-and-care facility.
We hear from Randy Sibbett, who moved into his mother’s house to take care of her, and asks, “Who on earth could ever have imagined the day would come when I would be changing the diapers of the woman who changed mine?”
Our Report is saying it’s finally time to shine a light on these families struggling with Alzheimer’s, time for a national conversation about Alzheimer’s, time for a full-court-press to fight Alzheimer’s. And it’s time for hope.
I get hope from new research we describe going on in our nation’s laboratories, where brilliant scientists are now looking for ways to diagnose, slow down, and even prevent the disease.
I get hope from the heroic efforts of activists like Princess Yasmin Aga Kahn, whose mother, movie icon Rita Hayworth, was diagnosed with Alzheimer’s way back in 1981. Princess Kahn writes in our Report about being gripped by the fear of the unknown that surrounded the disease back then. But then she sprang into action. She joined the brand-new Alzheimer’s Association, finding comfort and support there among the “husbands, wives, sons and daughters who had family members with the disease.” Today she’s tirelessly “pressing for heightened public awareness, increased government engagement, more research dollars, programs providing respite for caregivers and financial relief for those who cannot afford home care attendants and costly nursing homes.”
I’m hopeful because people like football star Terrell Owens -- whose beloved grandmother is living with Alzheimer’s -- are using their celebrity to testify on Capitol Hill and advocate for increased Alzheimer’s research funding.
I’m hopeful because we’ve already seen a call to action from former Speaker of the House Newt Gingrich and former Senator Bob Kerrey, co-chairs of the bipartisan Alzheimer’s Study Group, who tell us about their National Alzheimer’s Strategic Plan. I’m hopeful because their urgency has been picked up by leaders like Senator Susan Collins (R-ME), who pledges in our to “implement a national strategy that will move us forward in our battle against Alzheimer’s,” and Senator Barbara Mikulski (D-MD), who writes that we must “keep fighting until we find a cure for Alzheimer’s.”
It’s true we’re only at the beginning of the fight. For today, there are no answers. But I do know that if we don’t start talking about Alzheimer’s, if we don’t make it a true national priority, if we don’t do a much better job of supporting millions of American women who are raising our next generation while caring for our last, then Alzheimer’s won’t just devour our memories. It will also wear down our mothers, our sisters and our daughters -- and cripple our healthcare system and our businesses in the process.
But if we continue to roll up our sleeves, if we get busy and focus on defeating this fatal disease, then we have a chance. Then I’m convinced this Woman’s Nation will be able to say one day that, believe it or not, there once was a time when there was no cure for Alzheimer’s. That’s my goal.