When Memories Fade

Patients, families raise money and awareness for Emory’s Alzheimer’s Disease Research Center

By Maria Lameiras

Portrait

Emory patient Charlie Shaffer and his wife, Harriet, have responded to his diagnosis of MCI as they handle most challenges: with candor, courage, and action.

Kay Hinton

Take action: Upcoming events at Emory

“Frontiers of the Brain,” a new educational series presented by Emory’s Alzheimer’s Disease Research Center (ADRC), begins Tuesday, May 7, on the Emory campus. Both the program and parking are free. The event begins with a continental breakfast at 9:30 a.m. and ends at noon.

The “Hope on the Horizon” Atlanta luncheon and symposium will be held on Thursday, May 16, from 10:45 a.m. until 2 p.m. at the Piedmont Driving Club. A fund-raiser for the ADRC, the event is sponsored by the Alzheimer’s Drug Discovery Foundation and the Alzheimer’s Society of Atlanta.

The fourth-annual “A Family Affair” dinner and program will be November 20, 2013. Event chairs Sarah and Jim Kennedy will host an evening of dinner and dialogue with scientists and doctors from the ADRC.

For more information on any of these events, please contact Natalie DiSantis, project director for outreach with the Emory Cognitive and Movement Disorders Programs, at natalie.disantis@emory.edu or 404.712.2084.

Charlie Shaffer is an all-star.

As one of the Atlanta 9, a group of top civic leaders, he helped the city win its bid to host the 1996 Summer Olympic Games. He chaired the Atlanta Sports Council, which attracted the Super Bowl to the city in 2000.

A renowned trial lawyer for more than three decades, he is retired as a senior partner at Atlanta’s King & Spalding law firm. He is past president and CEO of the Marcus Autism Center, which he led at the request of founder Bernie Marcus. He is former vice president for institutional advancement at the Westminster Schools in Atlanta, and he helped his alma mater, the University of North Carolina—Chapel Hill (UNC-CH), raise $2 billion as chair of its capital campaign.

He also has mild cognitive impairment (MCI), one of the diagnostic precursors to Alzheimer’s disease and other forms of dementia.

When he flings open the front door of his Atlanta home and offers a hearty welcome, there is no indication of the “slight but noticeable and measurable decline in cognitive abilities, including memory and thinking skills,” as the Alzheimer’s Association describes the condition.

A Phi Beta Kappa graduate and a standout athlete on the basketball and tennis teams when he was at UNC-CH, Shaffer, seventy-one, is tall and fit, ebullient and quick to laugh. He is forthright about his diagnosis and wants nothing more than to raise awareness about early detection and money to fight a disease that, according to current estimates, will affect one out of four people by age eighty.

“Ever since Charlie came out publicly about this, people have been ringing the phone off the hook,” says Harriet Shaffer, his wife of nearly fifty years. “No one can comprehend that he has this.”

But the Shaffers can tell. Maybe it was because recent discussions weren’t anchoring in his sharp mind as readily as they once did. Maybe it was an inkling based on the fact that his mother died from Alzheimer’s at ninety-one.

“Everyone has normal memory issues as they age. Early on, when I was just about to turn seventy, I thought, ‘This is just what you expect,’ ” Shaffer says. “With normal conversations and activities during the course of any given day, I was fine. The first indication I had was related to my memory of immediate things.”

“It was just little things at first,” Harriet Shaffer says. “It was such a gradual thing. But then we both began to notice it, and we just had a sense about it.”

After taking memory tests with a psychologist, Shaffer asked his friend Tom Lawley, former dean of the Emory School of Medicine and a fellow board member at the Marcus Autism Center, for his advice. Lawley put the Shaffers in touch with Allan Levey, the Betty Gage Holland Chair in Neurology at Emory and director of the Alzheimer’s Disease Research Center (ADRC).

Levey gave the Shaffers the diagnosis of MCI in 2011. Since then, Shaffer has enrolled in clinical trials to contribute to new research focusing on identifying, treating, and learning more about MCI and how it relates to Alzheimer’s and other forms of dementia.

In addition to receiving study medication in a pharmaceutical trial, Shaffer is participating in a behavioral study that requires him to carry a “memory notebook,” a small pocket calendar where he jots down things to do each day, things to do the next day, and important things to remember from that day. By having participants incorporate a memory tracking and organization tool, the study is intended to help patients like Shaffer learn habits that can minimize symptoms of cognitive decline and help them retain independence and self-sufficiency.

In the yearlong drug study, participants are receiving atomoxetine, a drug approved by the FDA for the treatment of attention-deficit hyperactivity disorder. Researchers hope to determine whether the drug causes a change in the biologic markers—substances that may indicate the presence of a disease—in the cerebrospinal fluid of participants diagnosed with MCI.

During the study, the spinal fluid of subjects with MCI who take atomoxetine will be compared to spinal fluid of those who take capsules containing a placebo. After six months, subjects who took the placebo will be placed on atomoxetine, while those who received atomoxetine will be given the placebo.

Doctor in office with patient

Neurologist and Alzheimer’s expert Allan Levey works with a patient.

Jack Kearse

Levey hopes the study will determine how taking atomoxetine affects thinking and behavior, as well as imaging and blood biomarkers, and whether the drug alters signs of inflammation and other biomarkers associated with Alzheimer’s disease.

Shaffer does not know which capsules he is receiving.

On a recent morning as he sits in his living room discussing his MCI, his wife calls to him from the kitchen.

“Did you take the red pill today?”

Stopping mid-sentence, he makes a half-turn toward the kitchen and thinks for a moment.

“I’m not absolutely sure,” he calls back.

“No, you didn’t,” she says after a short pause.

He excuses himself and goes into the kitchen as she comes out and takes a place on the sofa.

“We are very fortunate to be in Atlanta and to have the opportunity to be a part of these clinical trials,” she says. “We are lucky to have discovered this early and to have the time we have, and that Charlie is doing as well as he is.”

The decision to speak publicly about the diagnosis comes from Shaffer’s natural drive to tackle any challenge head-on. He also hopes to help find treatments or a cure, so that his three children and nine grandchildren will not have to face a similar diagnosis.

“I’m so proud of him for coming forward and doing this,” Harriet Shaffer says. “Our friends have been so caring and supportive, and many of them have inquired about the research.”

Having watched his mother decline for years before anyone spoke about her condition, Shaffer stresses the need for early action.

“In your fifties, sixties, and seventies, you will naturally notice that your memory isn’t what it was twenty years earlier, but it is key to determine whether that is normal depending on your circumstances. Don’t ignore it,” he says. “Some memory loss is normal as you age, but a person who may have MCI needs to know as early as possible.”

Not only have the Shaffers taken steps to address Charlie’s needs as a patient, they have taken on the ADRC as a cause, organizing fund-raisers and bringing awareness to the need for private funding for research. Because they know families are intimately involved when patients are diagnosed with neurodegenerative diseases, they have become active with A Family Affair, an annual event whose proceeds benefit the ADRC.

Since it was established in 2010, A Family Affair has generated nearly $1 million in funding for the ADRC. The 2012 event, which featured Shaffer as a speaker, raised $630,000.

Harriet Shaffer is deeply touched by the love and support the couple’s children—son, Charles M. Shaffer III, and daughters Caroline Shaffer Vroon and Emi Shaffer Gragnani—have shown as their father has publicly shared his diagnosis. Their son traveled from New York for A Family Affair to give the introduction of his father.

A Family Affair was started by the family of Mack Taylor, founder of Atlanta real-estate company Taylor and Mathis, who passed away in January 2008 from complications of Alzheimer’s disease.

Taylor’s family—including his children, Andrew Taylor and Camille Taylor McDuffie, and his widow, Mary Rose Taylor—has contributed $1 million toward Alzheimer’s research at Emory, and Mary Rose Taylor remains an active volunteer for the ADRC.

Mary Rose Taylor remembers meeting her late husband on a blind date arranged by a mutual friend in February 1982. “We were at a table for two, and he slid into the booth across from me. As he looked up, I thought ‘Oh boy, I’m in trouble,’ ” Mary Rose Taylor says, laughing.

A news anchor for WXIA-TV and a twenty-three-year veteran of the broadcast news industry, she had been considering job offers in Washington, D.C., New York, and San Francisco. Instead, she and Mack Taylor were married just a year later in February 1983.

“He was kind and gentle, a man of integrity, but full of enormous energy. He was an avid outdoorsman and fisherman, an artist, a pianist, a pilot, a marvelous golfer, and the best wing-shot in the state,” she says of her late husband’s bird-hunting acumen. “He really had more innate talent than anyone I’ve ever known.”

The first indication that there was anything wrong was around 1985 when he began losing some of the hand-eye coordination necessary for his favorite sports. Gradually, over the next ten years, it became more and more difficult for Mack to remember conversations he’d had during the day or decisions he’d made. He began forgetting his way around while driving and exhibiting paranoia and agitation.

Family snapshot

Mack and Mary Taylor met on a blind date in 1982 and married a year later. Mack’s struggle with Alzheimer’s disease has led Mary to support Emory research.

Wendy Griffith

Mary Rose Taylor recalls a 1996 phone conversation with her sister-in-law, who still lived in her husband’s hometown of Opelika, Alabama. “She told me all his golfing buddies thought he had Alzheimer’s. I couldn’t believe no one had ever mentioned it to me,” she said.

Mack Taylor’s internist confirmed the diagnosis, and Taylor began seeing Levey at the ADRC in the summer of 1996. Mary Rose Taylor says her husband instantly trusted Levey, who helped guide the family throughout his treatment and care.

“To find a brilliant physician and scientist who can diagnose and guide you through treatment, as well as dealing with all of the ancillary family issues and providing moral support for the family and caregivers, is remarkable,” she says. “Knowing someone is there in your corner who truly gets what you are going through, who displays the empathy we all value in our friends and family members and doctors, is one of the things that marks the difference between the Alzheimer’s Disease Research Center at Emory and other centers. There is a passion there to care for the patients and the families, as well as a passion for research.”

Unless it can be treated effectively or prevented, the number of people with Alzheimer’s will increase significantly as the American population ages. Recently released statistics from the Alzheimer’s Association estimate that 5.2 million Americans have Alzheimer’s disease, including one in nine people age sixty-five and older. The first baby boomers began turning sixty-five in 2011, and the number of Americans age sixty-five and older is expected to grow from 39 million in 2008 to 72 million in 2030.

“If we are going to maximize the quality of life for people along the course of this disease, we need to invest ourselves in research of clinical care, and we as a society have to figure out how to support families and caregivers in this journey,” Taylor says. “This diagnosis can tear families apart and bankrupt savings. If you are a sole caregiver, and you are encumbered with the daily chores of looking after someone day in and day out, that is physically and emotionally debilitating. That is what most Americans in this situation will find themselves facing.”

By investing in clinical research and strategies to improve quality of life for patients and caregivers, Emory is addressing the full spectrum of Alzheimer’s and related diseases.

“What we have done as a society is isolate the face of Alzheimer’s disease to that of an older person. The face is the entire family,” Taylor says. “It is particularly the faces of the children and grandchildren whose futures depend on our actively investing in research now, and that is research in early diagnosis, treatment, interventions, caregiving, and genetics.”

Taylor has worked closely with Harriet and Charlie Shaffer since the couple became involved with the ADRC and A Family Affair.

“What is extraordinary about Charlie’s story is that he has MCI. I don’t know anyone who has come forward to say they have a diagnosis of MCI. For a person of his stature to come forward at this stage and be a spokesperson has generated tremendous support for the ADRC,” she says. “The greatest hope in fighting these diseases is in early clinical trials for treatment interventions at the earliest stages, and the Shaffers’ openness about this is making it OK for people to come forward.”

Charlie Shaffer says he is simply living his life as he always has—with the exception that he knows he is now a spokesperson for MCI.

“People know, and they see that I am able to continue to do all of the challenging things that are out there. Just because I have MCI, don’t write me off,” he says. “It doesn’t stop your life.”

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