The Shriver Report – Why We Did This Report

Special Edition

Why We Did This Report

My mother sat in her living room chair, in the same spot that had been hers for the nearly 50 years she had spent in her house. My brother sat in the companion chair to hers, the one my father had vacated almost 40 years earlier. I was on the couch, at the end closest to them. This was furniture that my brother and I were expected to respect in our younger years. On this day, my mother would consider neither of us respectful to her, even though that was far from true. Despite preparing with all of the best information on how to have the conversation, despite the fact that my brother and I were in agreement on the need for the discussion, and that we were following up on what my mother’s doctor had already told her, our talk did not go smoothly. She acknowledged that she should not be driving, but she did not want to give up her keys.

One of 13 children born into Wabash River-bottom poverty during the Depression, my mother had been toughened by a challenging life. Widowed by a young husband while still young herself, she was abandoned with two young children by another. If not highly, formally educated, she had always been one of the sharpest people I’ve known. On the day we sat with her to talk about her no longer getting behind the wheel, she was much smaller than the 5’0” height she had always claimed. Her cognitive exams had shown greater impairment, and it was often quite apparent without the tests. Even so, she was still a strong presence. She wanted to preserve the option to drive “if necessary” in an “emergency.” She also clearly sent the message that the two people she cared about most in the world had now abandoned her to side with her doctor. I don’t recall ever having a more painful conversation.

Just as I had to come to grips with the matriarch of our family having Alzheimer’s disease, so, too, have millions of other people. There are as many as 5.1 million Americans age 65 and older with Alzheimer’s disease 1 and among them 3.3 million women and 1.8 million men.2 Although this disease is devastating to all Americans, it is women—our mothers, grandmothers, sisters and aunts—who comprise almost 65 percent of those with the disease. Unless we discover effective treatments that prevent, delay the onset, the progression or cure Alzheimer’s, in the next 40 years it will be our daughters who will make up the 8 million women with the disease by midcentury.3

Given my mom’s Alzheimer’s (she died three years ago) and my role as president and CEO of the Alzheimer’s Association, I’m especially sensitive to the disproportionate effects of Alzheimer’s on women demonstrated by The Shriver Report: A Woman’s Nation Takes on Alzheimer’s. It’s not difficult for me to understand why so many families are in denial about Alzheimer’s. Facing it, like the disease itself, is terrible for everyone affected. Nonetheless, denial causes many with disease to go undiagnosed. It causes families to be completely unprepared for the realities that so many will face as it progresses, and we know anecdotally4 that many physicians avoid diagnosing Alzheimer’s because they don’t want to be the bearer of such bad news. Some will simply prescribe available medications without making a diagnosis.

This anachronistic approach must change. We need to talk about Alzheimer’s disease openly and widely until acceptance of its diagnosis and its discussion is commonplace. That’s why Maria Shriver and her entire family speaking out about their father’s condition is so vital. That’s why the Alzheimer’s Association is working with her on this very important report. That’s why the Reagan family’s discussion of President Reagan’s Alzheimer diagnosis was so crucial in 1994, and why their work with the Alzheimer’s Association has been so beneficial. It’s also why the Alzheimer’s Association has made it a high priority to raise the level of the discussion in America by annually releasing Alzheimer’s Disease Facts and Figures; sponsoring the HBO series “The Alzheimer’s Project”; working closely with the media to produce significantly increased coverage of Alzheimer’s; placing advertising to create awareness; and working with other Champions like David Hyde Pierce, Kate Mulgrew, Victor Garber, Natalie Morales, Bradley Cooper, Soleil Moon Frye, Seth Rogen, Terrell Owens, Peter Gallagher and many others to get America talking about Alzheimer’s.

We will know that we have reached yet another level of this vital public discussion when someone like a Hollywood celebrity or a sitting politician steps before the cameras early after diagnosis and unequivocally tells the world that he or she has Alzheimer’s. This will be another turning point in the national discussion of this burgeoning epidemic.

One of the things I’m most proud of is the Alzheimer’s Association’s important role in providing individuals who have Alzheimer’s disease with opportunities to speak out and tell the public directly what Alzheimer’s does to their lives. One of the ways we do this is through our Early Stage Advisory Group. Our advisors help to inform our messages and provide valuable insight into what we do as we work alongside them to raise awareness and elevate concern. In fact, current and alumni members of our Early Stage Advisors, Kris Bakowski, Mary Ann Becklenberg and Mimi Steffens, have written essays contained in this report.

Because of so many remaining myths and misconceptions, it’s important to say explicitly that Alzheimer’s is not just a little memory loss. It’s not normal aging. It’s a progressive, degenerative and ultimately fatal disease. The problem is already so big that it is difficult to grasp the scale of the staggering numbers. With the aging of baby boomers like me, the current size of the epidemic—with its devastating impact on individuals with the disease, their caregivers and families, the medical system, our state and federal budgets and our economy—could be dwarfed by the growth of the problem during our lifetimes.

Right now, 5.3 million people are estimated to have Alzheimer’s in the United States, including as many as 200,000 who are younger than 65.5 If we don’t successfully change the course of the disease by the middle of the century, as many as 16 million Americans could have Alzheimer’s.6 This overall incidence level doesn’t capture the disproportionate effect on the women of America. One in six American women will have Alzheimer’s during her lifetime. If she has a husband, one in 10 of those men will ultimately have Alzheimer’s,7 creating the very real possibility that a woman will be a caregiver for her husband and then develop the disease herself.

As a result of such a high level of incidence, Alzheimer’s is now the sixth-leading cause of death in the United States. The disease killed more than 74,000 individuals in 20078 (the last year with available statistics). For perspective, that’s more than breast cancer and prostate cancer combined. As reporting of diagnoses improves and the number of people with the disease is driven by the aging baby boomer population, deaths due to Alzheimer’s will continue to rise.9

The economic factors of Alzheimer’s rival the human devastation of the disease. According to the Alzheimer’s Association’s report Changing the Trajectory of Alzheimer’s Disease: A National Imperative, we’re spending $172 billion annually on Alzheimer’s and other dementia care in America. $88 billion of that is for Medicare alone, which is 17 percent of the total Medicare budget.10 Medicare beneficiaries with Alzheimer’s or another dementia cost the system three times more than someone else 65 or older in Medicare who does not have a dementia.11 For Medicaid, the cost multiplier for someone with dementia is nine times more than a comparable individual.12

The Trajectory Report also estimates that during the next 40 years, the cost of Alzheimer’s and other dementias will exceed $20 trillion. Millions will get Alzheimer’s and other dementias, and millions will suffer. Millions more will care for them and will suffer in different ways. So, it’s going to cost us $20 trillion13 and all we’ll have to show for it is a long list of the dead, personal heartbreak and the devastating effects on caregivers and families.

Caregiving for Alzheimer’s can literally take everything a caregiver has to give. The manifestation, the degeneration and the progression of the disease varies with the individual, but the broad outlines are the same. If diagnosed early, after symptoms have been recognized, the individual with the disease can enjoy a positive and functional (though impaired) life, sometimes even for a few years. However, the individual will eventually lose functions until caregivers must be available 24 hours a day, at home or in a residential care facility.

In one study of family caregivers, 59 percent of caregivers felt as though they were “on duty” 24 hours a day during the last year of life for the person with dementia.14 72 percent acknowledged that “they experienced relief when the person died.”15 A National Alliance for Caregiving and AARP study found that caregivers providing support for someone with Alzheimer’s or another dementia were 31 percent more likely to reduce hours or quit work altogether when caring for someone without behavioral symptoms when compared to caregivers of other older people.16 For the similar group of individuals caring for someone with behavioral symptoms of Alzheimer’s or another dementia, the comparative likelihood of needing to reduce hours or to quit a job was 68 percent.17

The Alzheimer’s Association is the leading, global voluntary health organization in Alzheimer care and support, and the largest nonprofit funder of Alzheimer research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.

Our vision is a world without Alzheimer’s, and since our founding in 1980, we have moved toward this goal by advancing research and providing support, information and education to those affected by Alzheimer’s and related dementias. We provide information, care consultation at all stages of the disease, support groups and other community interventions to make a difference in the lives of those who have the disease and those who are affected by it.

To find the ultimate answers to the disease, we fund cuttingedge research in top laboratories around the world. We support novel approaches that drive new thinking in the field. We fund science aimed at treatment and diagnosis as well as psychosocial interventions. And we annually convene the largest research meeting in the world, the Alzheimer’s Association International Conference on Alzheimer’s Disease (AAICAD), drawing together the global Alzheimer research community to advance the science.

The Alzheimer’s Association is also the leading voice for Alzheimer’s disease advocacy, fighting for critical Alzheimer research, prevention and care initiatives at the state and federal level. Among other important initiatives, we worked closely with the Social Security Administration on its inclusion of younger-onset Alzheimer’s in their Compassionate Allowances Initiative to streamline approval of benefits for those diagnosed before age 65. And, we worked with the U.S. Food and Drug Administration (FDA) to add people with dementia and their caregivers to FDA Advisory Panels as consultants.

In combination with our efforts, what’s most needed in Alzheimer’s is investment in more research to change the course of the disease as soon as possible. The science community is upbeat about the potential for Alzheimer advances, but as the boomer generation ages to the point of what is considered the earliest age of typical onset, 65, more dramatic increases in prevalence draw ever nearer. While one in eight of all of those over 65 have Alzheimer’s, almost one in two of those over 85 have it.18 We need to act. Now.

Based on the most recently available data, annual federal funding for cancer is about $6 billion, for cardiovascular disease about $4 billion and for HIV/AIDS about $3 billion. These are all important investments that should continue based on their high returns in lives saved.19 Not counting the one-time stimulus funds, total federal funding for Alzheimer research is just $469 million.

Alzheimer’s must be a national priority. I’m encouraged by the White House Briefing on the Challenge of Alzheimer’s Disease in the United States in which I participated on World Alzheimer’s Day, Sept. 21, 2010. I believe it was a good step by this administration toward what we need: a real and sustained effort to change the course of Alzheimer’s. But today, our federal government—in fact, our country as a whole—is not prepared for the worsening Alzheimer disaster.

We aren’t funding enough research to stop it. We don’t have a plan for handling the surging cost of care if it isn’t stopped. We don’t have enough residential care facilities for that inevitable point in the disease process when even the most dedicated caregivers can no longer handle the care at home. Do the math: Without even considering the human effects, Alzheimer’s disease will cost our nation $1 trillion a year when a baby born in 2010 turns 40.20 And, we’re spending less than $500 million a year to avoid those costs. Should we invest more now to stop it, or wait and let that little baby pay the costs 40 years later? The answer is clear.

I get the benefit of exposure to scientists working worldwide to end this disease. I have the opportunity to see so many others dedicated to providing care and support to those who will have the disease before we finally cure it, and I see all of the volunteers, staff and donors who advance the mission of the Alzheimer’s Association each and every day. Because of their collective energy, I remain optimistic about Alzheimer advances. I believe that we will succeed. We must. My mother lived a modest life, even after her sons could support her additional needs or wants, but she did always enjoy clothes. She was a seamstress for both vocation and avocation. She also always had shoes to go with those clothes. When my wife and brother and I were packing up and cleaning out the house she had lived in all those years, we discovered she owned a lot more shoes than we had previously realized! I have since joked that depending on your age group, you might compare her number of pairs to Imelda Marcos or Carrie Bradshaw.

As my brother and I worked in another room, my wife came in with one particular shoebox to show us. On the end of the box was a little note, in my mother’s hand: “My Best Shoes.” It hit me that at the moment of writing that note my mother must have realized her own future: she would soon be unable to recognize her own “best shoes.” I was shaken because it was simultaneously so small and so simple a moment, yet so representative of what people with Alzheimer’s face—and because no one should have to face it. No one—no mother, no sister, no father, no brother—should have to write such a note.

I’m confident that we will prevail against Alzheimer’s. It’s not a matter of “if,” it’s a matter of “when.” But “when” needs to be sooner rather than later. It’s too late for my mother and the millions more who have died or who have progressed too far in their disease. Until we realize our vision of a world without Alzheimer’s, the Alzheimer’s Association will keep pursuing every possible approach to support those facing the disease and to find the answers we need to end it.

Harry Johns is a contributor to The Shriver Report.
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