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Role of a Lifetime: Since her mother's diagnosis of Alzheimer's disease, actress Marcia Gay Harden has become passionate about raising awareness and advocating for research.

Childers, Linda

doi: 10.1097/01.NNN.0000515872.78320.37
Features: Marcia Gay Harden

Since her mother's diagnosis of Alzheimer's disease, actress Marcia Gay Harden has become passionate about raising awareness and advocating for research.

PHOTOGRAPH BY LARSEN & TALBERT

WEB EXTRA: For more about Alzheimer's disease research, go to http://bit.ly/NN-ADResearch. For clinical trials, go to http://bit.ly/NN-ADTrials.

In 1990, Marcia Gay Harden made her big screen debut as Verna Bernbaum in the Coen brothers' black comedy Miller's Crossing. In 2000, she won an Academy Award for Best Supporting Actress as Lee Krasner, in Pollock, a biopic about the painter Jackson Pollock. Nine years later she snagged a Tony for her role in the Broadway hit God of Carnage. Today, she plays the brilliant emergency room doctor Leanne Rorish on the CBS medical drama, Code Black. Throughout her career, Harden has proved her versatility. She can assume any role and deliver an award-worthy performance.

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Yet Harden admits she was unprepared for the role she assumed after her mother, Beverly, was diagnosed with Alzheimer's disease in 2009 at age 72. As the irreversible, progressive brain disorder slowly destroyed her mother's memory and thinking skills, Harden found herself becoming her mother's caregiver and parent. “It's very much a disease that impacts the entire family,” Harden says. “There are so many decisions to make on behalf of another person.” She and her siblings have had to determine where their mother should live, what sort of care she should have, and how much intervention she might want in her last days, says Harden.

For most of her life, Harden's mother was a spirited Navy wife who raised five children, often by herself, while her husband was at sea. Years later, as Harden raised her own three children, Beverly, whose husband died in 2002, became a doting grandmother.

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SUBTLE SIGNS

The signs of encroaching disease were subtle, Harden remembers. “One day my mom couldn't find her passport, even though she had put it in her pocket just a few minutes before.” Another time, her mother was accompanying Harden to an informal press event, and they had discussed what they were going to wear several times. “Right before we left, my mom came downstairs ready to go, but she was dressed in a long, formal, red evening gown that she had planned to wear to a gala another night. At that moment, I knew something was wrong, and so did the people on my hair and makeup team who have been with me and known my mom for years. We knew this wasn't normal aging or forgetfulness.”

Episodes like that—as well as forgetting recently learned information, numbers, and dates—became so frequent, Harden says, that she and her siblings insisted their mother see a physician. After undergoing a thorough medical history, mental status testing, and a physical and neurologic examination, Harden's mom was diagnosed with Alzheimer's disease, a condition that affects more than 5 million Americans, according to the Alzheimer's Association.

The diagnosis was a shock, says Harden. “You think, ‘That can't be happening to my mom. That only happens to other people,’” she says. “It's hard to look at the person she was and see how much the disease has robbed her of her memory and independence.”

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MOMENTS TO SAVOR

Now 80, Beverly lives in her own home with the assistance of paid caregivers. Although she now uses a wheelchair, her daughter says she is still able to enjoy the beauty of one of her favorite hobbies, ikebana, the art of Japanese flower arranging.

“My mom learned ikebana while we were living in Japan when I was a kid, and it really brought out the artist in her,” says Harden, who is writing a book, The Seasons of My Mother: A Memoir of Love, Family, and Flowers (April 2018, Atria Books). A portion of the book's proceeds will be donated to Alzheimer's disease research. “She still enjoys the light and beauty of flowers. Her mind has been affected by Alzheimer's, but her soul hasn't changed.”

Her mother's declining ability to do something she once knew so intimately was another clue, says Harden. “When my mother was having trouble remembering the rules of this disciplined art form, I knew it was time to figure out if something was wrong.” Harden hopes the book, which she calls “a lyrical, loving homage to my mom,” might guide others who are helping a relative or loved one navigate the disease.

“As adults, my mom and I used to travel together, and we became great friends,” Harden says. “Her diagnosis has taught me the importance of living in the moment and cherishing every second with your loved ones.”

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A WOMAN'S BURDEN

That Beverly was diagnosed with Alzheimer's disease and Harden has become deeply involved in her care is a common phenomenon, says Reisa A. Sperling, MD, MMSc, a neurologist, researcher, and director of the Center for Alzheimer's Research and Treatment at Brigham and Women's Hospital in Boston. “Women are nearly two times more likely to develop the disease than men, and women who are not diagnosed are very likely to become caregivers for someone with the disease at some point,” she says.

Evidence backs up these differences between men and women. In a study published in the Annals of Neurology in April 2014, researchers at Stanford University looked at medical records of 8,000 people and found that women who carried the apolipoprotein 4 (APOE4) gene, a gene known to increase the risk of Alzheimer's disease, were twice as likely to develop the disease as women without the gene. More surprising, though, was the finding that men with the gene were no more likely to develop the disease than men without the gene. It appears that having the gene confers a risk specifically to women.

Three studies presented in July 2015 at the Alzheimer's Association International Conference in Washington, DC, highlighted additional differences between how men and women develop the disease. In one, researchers at Duke University found that women with mild cognitive impairment (MCI) experience cognitive decline two times faster than men. Another study, from Oregon Health & Science University in Portland, found that among adults with post-operative cognitive dysfunction as a result of general anesthesia during surgery, women declined more rapidly than men. A third study by scientists at the University of California, San Francisco, found that women had more amyloid plaque in their brains than men of the same age and cognitive ability, regardless of whether they had the APOE4 gene.

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KNOWLEDGE IS HELPFUL

No family or patient wants to hear a diagnosis of Alzheimer's disease, but getting a diagnosis early is important, says Dr. Sperling. It can help families set expectations and accept changes they see in their loved ones. Information and support groups offered through patient organizations such as the Alzheimer's Association can teach families coping skills and provide support and assistance.

“As the disease progresses, both the patient and their family will need more help,” Dr. Sperling says. “Whether patients are cared for at home or in an assisted living or skilled nursing facility is a personal decision, but the important thing is for families to respect their loved ones' dignity and to ensure they are safe.”

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RECOGNIZE EARLY SIGNS

Symptoms of Alzheimer's disease can vary from person to person, but the classic sign is a gradual loss of short-term memory, says Gary Small, MD, director of the UCLA Longevity Center. Other signs may include confusion, anxiety or agitation, repetitive speaking or actions, forgetting how to use simple tools such as a pencil, difficulties with day-to-day activities such as dressing, bathing, and toileting, and trouble recognizing loved ones.

In an effort to raise awareness of those early signs and symptoms and encourage people to talk to their health care providers, Harden has teamed up with the pharmaceutical company Biogen on a campaign called Notes to Remember (http://notestoremember.com). She wants to help people get past the denial she felt when she first noticed her mom's memory problems and to stress that recognizing the earliest signs of the disease can help patients by giving them time to participate in their own legal, financial, and long-term care planning.

“I've already given directives to my children about the type of care I want in the event I can't make decisions for myself,” Harden says. “I've also become interested in learning more about how I can help keep my brain healthy by reading books such as Brain Rules by John Medina.” (John J. Medina, PhD, is a molecular biologist at the University of Washington in Seattle.) She's increased her commitment to physical exercise—she loves bike riding and swimming—and healthy eating. She also stays socially and mentally active, habits she knows are good for physical health as well as brain health.

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PROTECT YOUR BRAIN

In less than 1 percent of all cases of Alzheimer's disease, a genetic mutation in one of three genes is responsible, says John Morris, MD, FAAN, professor of neurology at Washington University in St. Louis and director of the Knight Alzheimer's Disease Research Center. Carriers of this mutation will inevitably develop the disease and generally at an atypically young age (in their 30s, 40s, or 50s). More often, families may share genetic factors that increase susceptibility for Alzheimer's disease, but by themselves these factors do not cause the illness. The most powerful genetic susceptibility factor is APOE4. However, by far the greatest risk factor for Alzheimer's disease is increasing age. Other proposed contributors include cardiovascular conditions such as high blood pressure, diabetes, and high cholesterol; inflammatory diseases; and physical inactivity and other lifestyle factors.

In a study published in 2014 in The Lancet Neurology, researchers assessed seven potentially modifiable risk factors—diabetes, midlife high blood pressure, midlife obesity, physical inactivity, depression, smoking, and low education—that have consistently shown an association with Alzheimer's disease. Their analysis revealed that the risk for the disease might be reduced through improved access to education and programs designed to help people quit smoking, start exercising, lose weight, control high blood pressure and diabetes, and treat depression, although the effectiveness of these strategies remains to be proven.

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NO CURE YET

But, as Harden knows from experience—her mother was “the poster child for healthy eating and exercise,” she says—taking care of yourself is no guarantee against the disease. And once it starts, it only gets worse. “My mom had signs of dementia several years before her diagnosis of Alzheimer's,” she says. “Her doctor started her on a medication to help manage her symptoms, but it didn't seem to work or halt the progression.”

Current medications for Alzheimer's disease may provide symptomatic relief for a short period of time, but none can slow disease progression, says Dr. Sperling. That's why researchers are focusing on ways to delay or prevent memory decline before symptoms are evident and brain damage has occurred, she says.

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HOPE FOR THE FUTURE

Like many people whose lives are affected by Alzheimer's disease, Harden wants to make a difference. “I hope that as an Alzheimer's advocate I can help increase knowledge of the disease and get people looking for early signs and symptoms and participating in clinical trials,” she says.

In the meantime, she continues to visit her mom and send her flowers on a regular basis. Beverly's memory is diminished, Harden says, but she still maintains her wit and tenacity and loves laughing at a good joke. “When I call or visit, the caregivers use cues such as, ‘Oh look, it's Marcia Gay,’ to help my mom remember,” Harden says. “She seems to recognize my face, and she hasn't lost the essence of who she is—a sweet Dallas lady.”

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Important Resources

* Alzheimer's Association: http://alz.org; 800-272-3900

* Alzheimer's Disease Education and Referral Center: https://www.nia.nih.gov/alzheimers; 800-438-4380

* Alzheimer's Foundation of America: https://alzfdn.org; 866-232-8484

* The Association for Frontotemporal Degeneration: http://theaftd.org; 866-507-7222

* Brain health: http://brainhealth.gov

* Lewy Body Dementia Association: http://lbda.org; 800-539-9767

* UsAgainstAlzheimer's: http://usagainstalzheimers.org; 202-349-3803

© 2017 American Academy of Neurology