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Patient starts conversation on Alzheimer’s

“I am trying to get people to talk and ask me hard questions,” said Charlie Collier, who is diagnosed with early onset Alzheimer’s disease.

Suzanne Kreiter/Globe Staff

“I am trying to get people to talk and ask me hard questions,” said Charlie Collier, who is diagnosed with early onset Alzheimer’s disease.

For 25 years, Charlie Collier traveled the country, seeking donations for Harvard University, where he gained a national reputation in the field of family philanthropy. Now, he is speaking out, as much as he is able, on a topic even closer to his heart: Alzheimer’s disease.

Five years ago, at age 60, Collier was diagnosed with early onset Alzheimer’s. Though his speech and handwriting are somewhat impaired these days, Collier’s intellect remains nearly as sharp as it was in 2001, when he published the groundbreaking book “Wealth in Families,” now in its 11th printing.

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Collier turns 65 this year and like many older baby boomers, he knows that the word “Alzheimer’s” sends chills down spines. Just as some families he counseled as Harvard’s senior philanthropic adviser hated discussing money, many people do not want to talk about Alzheimer’s.

“I am trying to get people to talk and ask me hard questions,” he said, haltingly.

One American develops the disease every 68 seconds, according to the nonprofit Alzheimer’s Association, and more than 200,000 Americans have early onset Alzheimer’s. A total of 5.2 million people in the United States have the disease, a number that is expected to increase to more than 7 million by 2025.

It was six years ago that Collier began to worry. A veteran traveler, he missed a flight out of Logan Airport by an hour. After a lifetime of safe driving, he had two accidents on the Massachusetts Turnpike when he failed to slow in time. At work, he would lock his car and then immediately forget that he had done so.

But the incident that made him call his doctor happened during a tennis match, when his normally powerful forehand, second nature to him, refused to cooperate.

‘I am trying to get people to talk and ask me hard questions.’

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“Then I said to myself, this is something really bad,” Collier said, pointing to his head.

Doctors at first thought he had had a ministroke. But after several months of tests, he was diagnosed with early onset Alzheimer’s, which affects those younger than 65, some even in their 40s or 50s.

Of the more than 5 million Americans with Alzheimer’s disease, about 4 percent have early onset, according to the Alzheimer’s Association, which raises money for research and provides care for those with the disease.

Dr. Gad Marshall, associate medical director of clinical trials at the Brigham and Women’s Center for Alzheimer Research and Treatment, where Collier recently completed an experimental drug trial, said that in the United States, the average age for dementia related to Alzheimer’s is 73.

“Unfortunately, Alzheimer’s really is an epidemic,” said Marshall, a neurologist.

And as people live longer due to medical interventions, the numbers will only increase. There is no treatment to prevent it, and no cure for it, though there are some drugs that temporarily slow symptoms, he said.

Though Collier is the one with the disease, it seems his goal is to put others more at ease with the subject. He will speak Sept. 30 at the Boston Public Library about his journey through academia into Alzheimer’s.

“I think my illness is a gift,” he said in a video made shortly before he retired from Harvard in 2011. “I don’t have much unfinished business, and I don’t have a long bucket list either.”

But he also acknowledged that the disease frightens and frustrates him.

“It’s hard, sure,” he said. “It’s really hard because my sons see me in a diminished state.”

In 2012, Collier was awarded the prestigious Harvard Medal, which recognizes extraordinary service to the university. A graduate of Phillips Academy in Andover, he earned a bachelor’s degree in religion from Dartmouth and a master’s from Harvard Divinity School. Before working at Harvard, he also raised money for Andover, Brown, and Princeton.

With his khakis, a blue pin-striped shirt, and tassled loafers, Collier looks like an aging preppy. After spending the morning at Brigham and Women’s Hospital, in a clinical drug trial, he still wore the hospital’s blue wristband.

Early retirement has allowed him to see more of family and friends, and his condition has allowed him to spread the word that those with Alzheimer’s need not hide in shame. He is a volunteer with the Cure Alzheimer’s Fund, a nonprofit that raises money for research, and participates in programs, including a support group, run by the Alzheimer’s Association.

Collier’s main symptom so far is aphasia, a problem retrieving and enunciating words. In an interview in his Wellesley town house, he was aided by his partner, Susan Stover, who offered prompts. Stover, a consultant on nonprofit fund-raising, also “interviews” him at his speeches, asking the questions for him to answer. He has given two talks so far, at the Wellesley Free Library and at the Hillsboro Club in Florida, where his sister lives.

At one point, he shuffled through papers to recall a date, and gestured to make a point that his mouth could not quite form.

“Is this what you’re looking for, love?” asked Stover, as she held up a sheet of paper.

Tears came, from both Collier and Stover, as they watched the video made when his speech was still clear. Stover took his hand. On screen, Collier talked about his life, and what he wants his two sons and two grandsons to know: “Find your passion and turn it into work. Lead your own life while staying connected to family. Find out for yourself what is meaningful in life. Our time here is short; the only response is gratitude.”

He named his speech “Alzheimer’s: the Good and the Bad.” The bad, people already know. Alzheimer’s is a progressive, terminal brain disease that slowly destroys memory and thinking skills. It is the most common cause of dementia among older people, caused by an abnormal protein that makes nerve cells in the brain shrivel and die.

But the good? Collier said he is eating and exercising better, and now that he knows “my life is finite,” he thinks more about what he values.

As a child in the 1950s, he had dyslexia before the word was known. Teachers would say, “He’s a nice boy. He can’t read, but we’ll promote him anyway.” His competitive squash and tennis games helped him get into Dartmouth, where he took a required religion class. He loved it, decided to major in religion, and later studied it at Harvard.

Collier also studied at the Bowen Center for the Study of the Family in Washington, D.C., which focuses on problem-solving in one’s life based on the emotional dynamic within one’s family. He applied this method to philanthropy, encouraging potential donors to tell their family stories, and asking questions such as, “What is your future vision for your family? What’s your family’s definition of success? What is an appropriate inheritance for your children?”

Often, he would not even mention donating to Harvard, but the gifts still came.

“Charlie’s a pioneer, he’s a guy driven by a desire to go places that people haven’t been,” said former Harvard colleague Al Halliday. “He created this field of philanthropic advising out of whole cloth, as it applies to families.”

Halliday, who took over for Collier when he left Harvard, said his friend’s conversation on Alzheimer’s is just the next chapter in what Charlie has always done.

“Most of us look the other way when the door opens to sensitive conversation,” Halliday said. “Charlie walks right through that door and engages the issue head on. He’s encouraging public discussion around this terrible disease.”

Collier’s son Whit said he is not surprised at his father’s new cause.

“He’s basically looking at his illness as a new challenge,” said Whit, 37, a financial fund manager who lives in Wellesley.

In his video, Charlie Collier speaks about “doing soul work” now that he has Alzheimer’s.

“I think about my life often because I am trying to get it right,” he says. “I have changed because of my illness, hopefully for the good.”

Bella English can be reached at english@globe.com.
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