When a deadly disease has no cure, no prevention, and no life-changing treatment, our natural response is fear and denial. Even physicians are prone to avoid discussing Alzheimer’s. But recently the disease has emerged from the shadows, thanks in part to the bestselling book and Oscar-winning movie “Still Alice” and a burst of activism led by journalist and former first lady of California Maria Shriver, whose father died of Alzheimer’s in 2011.
Still Alice portrays a fictional Ivy League professor, Alice Howland, who learns that she has a rare form of Alzheimer’s disease that strikes in middle age. We watch as she loses words, coherent thoughts, memories, independence—everything but her love of family and her essential humanity.
Currently 5.3 million Americans are living with this disease, but that number is expected to more than triple by 2050 as Baby Boomers age. In the next decade, Georgia is predicted to be among the 10 states experiencing the sharpest increases in cases, with a projected 46 percent rise in the number of elderly Alzheimer’s patients.
We gathered a roundtable of experts dedicated to raising awareness about the nation’s sixth-leading cause of death: Lisa Genova, a neuroscientist and author of “Still Alice”; Monica W. Parker, MD, an assistant professor of medicine in the department of neurology at Emory University and educator and clinician with the Emory Alzheimer’s Disease Research Center; Leslie Gregory, president and CEO of the Georgia Alzheimer’s Association chapter; Kim McRae, a former caregiver and cofounder of Culture Change Network of Georgia, which promotes better care for people with dementia; and Kris Bakowski, a Georgian who was diagnosed with the disease at age 46 when she began to struggle with math and occasional disorientation. Now nearly 60, Bakowski has served on the national Alzheimer’s Association’s Early-Stage Advisory Group and remains a vocal advocate. She avoids noisy environments but is still able to exercise, dine out, and write a blog (creatingmemories.blogspot.com).
The conversation was moderated by Atlanta Magazine contributing editor Michele Cohen Marill. This transcript has been edited for length and clarity.
The focus of medical research has been early intervention. Yet a recent study found that only 45 percent of people with Alzheimer’s had been told of their diagnosis. It seems that even doctors are reluctant to talk about Alzheimer’s. Why is the conversation so difficult?
Genova: It’s the misconception that there’s nothing you can do about it, so why put people through the stress? There’s so much stigma and shame and fear surrounding the words Alzheimer’s disease that even physicians are worried about how families will react. It’s a real disservice to people not to give them a name for what they have. We know that people on [Alzheimer’s drugs] Aricept and Namenda maintain a higher quality of life for significantly longer. Exercise, the Mediterranean diet, low stress, low cholesterol, keeping diabetes in check—all these things can stave off the progression of symptoms.
Parker: As a clinician, if there’s anything I would strongly advocate, it’s don’t run away from the diagnosis. If you are in an early stage, this gives you an opportunity to plan.
Bakowski: I was relieved when I got the diagnosis. It was like, okay, this is what I’ve got, now how are we going to deal with it? Having it in writing is important for Social Security benefits, health benefits, and that kind of thing. I actually lost my job after my diagnosis and had to sue my employer to get it back. I was able to work another two and a half years after that. It’s important to try to stay active and keep working as long as you can. A lot of younger people will lose their jobs and not know what they’re dealing with. Had they known while they were still working, they could have possibly made adjustments.
Kris, did you have difficulty getting doctors to diagnose you?
Bakowski: It took eight months to get a diagnosis, which isn’t really long. I know people who have waited a lot longer. I was fortunate in that regard. I was able to get on the medicine very early in the process.
In the book Still Alice, Howland’s colleagues don’t even want to sit next to her at a meeting, as if she’s contagious. Why is there so much stigma surrounding Alzheimer’s?
Parker: Having this diagnosis can be isolating. It can be isolating for the person who’s affected but also for the caregiver. People no longer want to socialize with you.
Was Still Alice a turning point? Is there new momentum to take on Alzheimer’s and other dementias, just as the pink ribbon campaigns transformed the fight against breast cancer?
Gregory: I think that’s happening. The more we hear about people whose names we recognize—singer Glen Campbell, Tennessee Lady Vols coach Pat Summitt—it puts a face on the disease.
Bakowski: Most people don’t associate Alzheimer’s with somebody younger. Because of the movie, people actually believe that it could happen to them now. But this can’t be a one-time shot. This is a good opportunity for us to bring younger persons with the disease to the forefront and let others see that they are real people that you can have a conversation with. After I was diagnosed, I joked that people just saw an “A” on my forehead. That’s all I was. I try to tell people I’m living with Alzheimer’s; I’m not dying from it.
McRae: Still Alice opened people’s eyes. We need to keep hearing the voices of people who are living with dementia. Just because somebody has the diagnosis doesn’t mean that their life is over and that they’re a 24/7 patient. They can still live an active life and contribute.
More women currently have Alzheimer’s disease than have a history of breast cancer. Maria Shriver and the Alzheimer’s Association are working together to rally women in a fight against Alzheimer’s. Is this a women’s disease, and do you wish that women were as angry about it as they have been about the high rates of breast cancer?
Gregory: I think women are absolutely at the epicenter of this disease—there’s no doubt about that. Two-thirds of the people who have it are women. Two-thirds of the caregivers are women. If they’re in their 60s, women are twice as likely to develop Alzheimer’s disease as they are to develop breast cancer. As women, we worry about breast cancer, but we need to worry about Alzheimer’s disease. And we just don’t.
Parker: More women need to be actively involved in clinical research and trials. We need to know more about the genetics. We need to understand the hormonal aspects.
Genova: The strategy of trying to get women fired up and take this as their cause is a great idea. Yet I would really resist the notion of calling this a women’s disease because I know so many men who have Alzheimer’s. And to exclude them from this conversation would be a real injustice. As much as I am excited about the idea of galvanizing women for all the reasons we just talked about, I really don’t like the language of calling this a women’s disease. I don’t think that’s fair to the millions of men who have this.
The African American and Hispanic communities also have higher rates of Alzheimer’s.
Parker: Alzheimer’s Association figures indicate that Alzheimer’s dementia rates are higher in African American and Hispanic persons with diabetes, hypertension, and low educational attainment. Some of the risk factors that affect cardiovascular disease are strong predictors of Alzheimer’s or dementia in these groups. The Alzheimer’s Disease Research Center’s Registry for Remembrance is our specialized outreach to African Americans and other people of color.
The word “still” has recently been associated with Alzheimer’s, as in the Twitter campaign that uses hashtags such as #stillgrandma or #stillmom. Shriver wrote a poem that she titled “Still Here.” And, of course, the book and movie are Still Alice. It’s a very simple but evocative word. What does it mean in this context?
Genova: When I was searching for a title for the book, I went through my hundreds of emails from people I had come to know with dementia. In almost every single email from someone with Alzheimer’s or someone related to them, the word “still” was in there. I can still run. I can still play the mandolin. I can still love my kids. I’m still worthy. Don’t you know that you are more than what this disease can rob from you? If I don’t remember this conversation 10 minutes from now, it doesn’t mean that this conversation didn’t matter. I’m still worthy of love. I’m still worthy of dignity. I’m still worthy of being here. That’s the idea behind it. People with Alzheimer’s get marginalized and alienated and isolated. What I think people with Alzheimer’s want everyone to know is, “I’m still here. I still matter. And I still deserve to be part of what’s going on.”
Georgia has created an Alzheimer’s Disease and Related Dementias State Plan, and one of the goals is to improve care for people with dementia. Will Georgia develop some innovative programs?
Parker: I recently went to Amsterdam looking at alternatives for dementia homes. Their concept, which I really loved, was that we’re not trying to help people die—we’re trying to help people live. And so they don’t shut their seniors away. They’re in group homes, six-person homes, where they’re living like a big family. You can walk; you can do whatever you want within this controlled environment. I’m on the board of [Atlanta-based] A.G. Rhodes nursing and rehab centers, and we’re looking at a model that’s similar to what we saw in the Netherlands.
McRae: The whole focus of the Culture Change Network of Georgia is to encourage person-centered care. If we as consumers don’t know that things can be better, then we’re just going to accept the status quo.
Recent data show Georgia will be among the states with the highest percentage increase in Alzheimer’s cases. What does this mean for us?
Gregory: We used to say that the tsunami was right around the corner. Now it’s upon us. It arrived when the first Baby Boomers started turning 65 [in 2011], and it’s only going to get worse. Anyone who’s in this field would tell you that we have to do things differently. For every $26,000 that’s spent on care, we’re only spending $100 on research. So think about the imbalance there.
Parker: Those states that have the highest number of persons over the age of 65 are going to have a higher incidence of diagnosed dementia and Alzheimer’s. And we’re Southerners. We eat lots of very rich foods that put us at risk for strokes, which are associated with vascular dementia, the second most commonly diagnosed form of dementia. Just about every major Georgia foundation has an initiative to help improve stroke numbers or obesity or diabetes. Those are the very same things that predispose you to brain dysfunction.
So it can be prevented?
Parker: There are some types of dementia that can be prevented. Lifestyle does have an effect. You can’t control your age. You can’t control your gender. You can’t control your race. You can control what you put in your mouth. You can control your physical activity. You can have some measure of control over how you choose to live your life.
Bakowski: There’s a huge growth in the number of people who are living with dementia who are becoming advocates. And so much of that is about having a sense of purpose. I can’t do research, so I do whatever I can to help. If it’s just talking to people and helping to educate, then that’s what I need to do for as long as I can talk.
Finding the right words
In the past, when older people became confused and forgetful, we called them “senile.” Today we use these terms to describe the disorders of cognitive decline:
The most common form of dementia involves protein plaques and tangles in the brain. Eventually nerve cells become damaged and die, leading to problems with memory, thinking, speaking, and even swallowing and walking.
Symptoms of mental decline, such as memory loss, that affect daily life. Some cases are reversible, such as those due to side effects of medication or vitamin deficiency.
A condition that damages the portion of the brain that lies behind the forehead and ears (frontal and temporal lobes), impairing judgment, emotions, speech, and some types of movement.
Lewy body dementia
A disorder in which clumps of protein accumulate in nerve cells.
Mild cognitive impairment
Problems with memory or judgment that don’t interfere with daily life. This may be an early stage of dementia, or it may never worsen.
Illness caused by more than one form of dementia, which occurs in about half of cases.
This form stems from strokes or bleeding in the brain due to blocked or damaged blood vessels. The primary symptom may be difficulty making decisions rather than memory loss.
About 5 percent of people with Alzheimer’s are under age 65. This variation is often inherited.
Source: Alzheimer’s Association, 2015 Alzheimer’s Disease Facts and Figures, alz.org
Atlanta’s search for a cure
Atlantans may hold clues to a cure for Alzheimer’s disease. This fall, researchers at Emory University will begin recruiting tens of thousands of adults for a long-term study to find the earliest markers of brain changes related to dementia. Other research institutions, such as Georgia Tech, are likely to collaborate.
The study will follow men and women between the ages of 45 and 75 with online assessments about physical activity, sleep, diet, and cognitive function. Some participants will have extensive medical exams, including brain scans, spinal taps, and blood tests. Researchers will analyze their genetics, metabolisms, immune systems, and brain functions.
Emory’s ambitious project stems from a $25 million “transformative” grant from the Goizueta Foundation, says Allan Levey, director of the Emory Alzheimer’s Disease Research Center and chair of the Department of Neurology at the Emory University School of Medicine.
Levey envisions the Atlanta study as the Alzheimer’s equivalent of the Framingham Heart Study, a pivotal research project that began with 5,209 men and women in the Massachusetts town in 1948. The study revealed major risks of heart disease, including high blood pressure, high cholesterol, diabetes, obesity, and smoking.
Similarly, researchers have much to learn about the causes of Alzheimer’s and other dementias. In 2012 the Obama administration released a National Alzheimer’s Plan that aimed to “prevent and effectively treat Alzheimer’s disease by 2025.” But so far that goal has proven to be elusive.
“We don’t have a single treatment right now that’s effective in slowing down the disease, so clearly that’s priority number one,” says Levey, who notes that Emory is already involved in ongoing prevention trials.
The numbers are daunting. Today 5.3 million Americans have Alzheimer’s. Care for it and other dementias is estimated to cost $226 billion this year. As the Baby Boom generation ages, the toll escalates. By one projection, care for Alzheimer’s patients will cost a trillion dollars in 2050. Yet Alzheimer’s research receives relatively little federal funding ($586 million this year) compared with cancer ($5.4 billion), HIV/AIDS ($3 billion), and heart disease and coronary artery disease ($1.6 billion).
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This article originally appeared in our July 2015 issue.