A Turning Point: Maria Shriver and a Woman’s Nation take on Alzheimer’s

(photo credit)
This weekend, as we do around this time every year, my family and I walked for the Alzheimer’s Association in our local Memory Walk. I’ve shared my mom’s Alzheimer’s story and the reasons why I do this, and I want to thank everyone who donated in support of our team’s fundraising efforts. But there’s so much more to be done to fight this disease.

Last week, I was invited to participate in a blogger/media conference call with Maria Shriver, California’s First Lady, and Angela Geiger, Chief Strategy Officer for the Alzheimer’s Association. We were there to discuss the just-released Shriver Report: A Woman’s Nation Takes on Alzheimer’s, based on a study conducted jointly by the Shriver Report team and the Alzheimer’s Association.

While her tenure in Sacramento is ending in just a few weeks, Ms. Shriver is also a journalist and author, and as founder of the California Women’s Conference, her focus is on women’s issues. She considers Alzheimer’s a women’s issue because women comprise 2/3 of Alzheimer’s patients and nearly 60% of the caregivers to those patients; 1/3 of those caregivers are providing 24/7 care to a family member with the disease. But it’s also a personal issue for her – her father was diagnosed with Alzheimer’s in 2003.

You can read excerpts and order a copy of the full report on the Shriver Report website. Here’s something that jumped out at me:

“Then almost out of nowhere came what I call The Alzheimer’s Turning Point. That was March 21, 2007, when The New York Times reported new Alzheimer’s Association statistics showing the number of people with Alzheimer’s was ballooning—rising by 10 percent in just the previous five years.2 They reported that fully 13 percent of Americans had Alzheimer’s—which meant one in eight people over the age of 65—and unless a cure was found, there would be more than 13 million people with Alzheimer’s by 2050, the best guess back then.

“That was the wakeup call the baby boomers heard. After all, we were the generation that believed ourselves to be so smart and savvy, that we were very sure our brainspan would match our lifespan. But now, just as the oldest boomers were entering their 60s, these new numbers meant we were at the leading edge of a tsunami—and it was happening not to some nameless old ‘them’ out there. The surge was headed for us, too. And that, I believe, scared a lot of people right out of denial.”
 – Maria Shriver on her realization that baby boomers – particularly baby-boomer women – would propel the Alzheimer’s agenda

(The emphasis on “one in eight people” is mine – that’s also the often-cited statistic on the likelihood of women developing breast cancer.)

Ms. Shriver hopes that this report will trigger another Alzheimer’s Turning Point, as it publicizes statistics and personal stories about the effects that this disease is having on patients and families right now – and projects the spread of these effects over the next decades if there aren’t institutional changes to address them. As people live longer and the incidence of Alzheimer’s becomes more widespread, we’re on the verge of a true crisis with a disease that currently has no effective treatment or cure.

Another quote:

“This Woman’s Nation has truly become a Caregiver Nation as well, and Alzheimer’s is putting the pedal to the metal. To be specific:

  • This year it’s estimated there are 11.2 million Alzheimer and other dementia caregivers, and 6.7 million of them are—you guessed it—women.
“So with women shouldering the biggest brunt of the burden of all this caregiving, I find it ironic that we’re still seeing articles like, ‘Why Aren’t Women Happy?’ They wonder why women aren’t satisfied with their advanced degrees and new corner offices. They ask..’What’s Wrong With American Women?’ Excuse me?
“What’s right with American women is that they’re rearing and providing for the next generation of Americans, while at the same time caring and providing for the last generation of Americans. What’s right with American women is that they’re doing it, even though studies show that caregivers pay a steep price in terms of their own health—increased stress, depression, lost sleep, chronic anxiety, immunesystem deficiency. They’re paying a financial price as well, because full-time workers who are also caregiving at home have lower earning power.
“American women are stressed out and maxed out. There’s nothing wrong with them! They just need support. What has to get right is our institutions. They need to respond to the changing dynamic in the American home. People with Alzheimer’s cannot live alone, and the family members who live with them and take care of them need help. Health and Human Services Secretary Kathleen Sebelius lays out for us in this report many provisions in the 2010 healthcare reform legislation, The Affordable Care Act, that provide relief for Alzheimer’s caregivers. It’s a start.”

The report’s suggestion about what needs to come next: an expansion of “family-friendly” benefits and community resources beyond those related to child care – which has been a tough enough battle on its own – to include elder care as well.

But in addition to talking about policies and practices to address the needs of patients and caregivers, the report also recognizes that the real hope for progress is in medical research. Research has discovered that Alzheimer’s may start much earlier and take longer to develop than previously believed; it may take up to twenty years for Alzheimer’s symptoms to develop, and at present, the disease cannot be diagnosed before symptoms are present. The federal government currently spends $500 million per year on Alzheimer’s research; compare that to $6 billion for cancer research and $4 billion for cardiovascular diseases. We’ve got a lot of catching up to do.

(Wondering about those symptoms? The Alzheimer’s Association wants you to know the 10 Warning Signs, and tells you how they differ from normal age-related changes.)

In response to a question during the call about what actions people can take right now to fight Alzheimer’s, Ms. Shriver advised “Exercise, mind-challenging games, a heart-healthy diet – anything that’s healthy for the heart will be healthy for the brain.” She and Ms. Geiger also emphasized family discussions about long-term-care plans.

Ms. Shriver told us that fear of Alzheimer’s is what’s driven her to become an activist and advocate. As a fellow “child of Alzheimer’s,” I understand that. That’s one of the main reasons I participate in Memory Walk. But as I said earlier, and as this report will convey, there’s so much more that needs to be done – and because of that, I’ve signed on as an Alzheimer’s Advocate to help change the conversation and push for the policies we need to fight this disease head on.

More reading: Maria Shriver on Alzheimer’s and Women at BlogHer.com

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