Longtime civic leader Lee Pelton reveals Alzheimer's diagnosis in personal essay

In a personal essay for The Boston Globe, longtime civic leader Lee Pelton revealed that he has been diagnosed with Alzheimer’s disease.

On GBH’s Boston Public Radio Wednesday, Pelton said he was “motivated by several impulses” to write the essay.

“One is that I wanted to bring to the public a disease that is often talked about only in hushed terms and one that is not well known,” he said. “I thought that if I could explicate my own experience, that would create in this community, and maybe beyond, some really thoughtful discussions about this disease.”

Pelton’s essay about his diagnosis comes more than one month after he officially stepped down as president and CEO of The Boston Foundation. (Disclosure: Pelton serves on GBH’s Board of Trustees.)

As the leader of The Boston Foundation, Pelton prioritized tackling deep economic inequalities across Greater Boston while broadening its work to include affordable initiatives and emergency assistance for vulnerable communities.

In 2024, The NonProfit Times put Pelton on its list of America’s 50 most powerful and influential nonprofit leaders. The same year, he was awarded the Harvard Medal. He’s also been included in Boston Magazine’s 150 Most Influential Bostonians, among numerous other recognitions.

Pelton, also the former Emerson College president, said there was another motivation behind the essay: his mother, who died of Alzheimer’s.

“She and I were very close. She was a wonderful woman and a wonderful mother,” he said. “So in some respects, I wrote this for her, in her honor.”

In the essay, Pelton details the last time his mother spoke to him, writing that she was bedridden at the time.

“On one side of the bed, her head was propped up on a pillow. She saw me come in on the right side of the bed, and she followed me all the way around to the left side of the bed where I sat down,” he said on Boston Public Radio. “She said in a clear voice — she had not spoken for months — she said, you are a good man.”

When asked if he had any second thoughts about his decision to write the essay, Pelton called it the best decision he ever made in his life.

“I’m so grateful for the many people who have reached out to me either through text or through emails or telephone calls,” he said. “I’m grateful for this day. … It’s very personal, but I stuck with it.”

Pelton said he first realized something was wrong when he began losing his short-term memory.

“I couldn’t remember what I should have been able to,” he said. “‘What did I do yesterday? What did I have for dinner?’ Things like that. I lost that entirely.”

In the essay, Pelton writes that the decline in his short-term memory has become steep in recent weeks, which he said is “really very hard.”

But he emphasizes that despite his memory loss, he’s “still a sentient being.”

“I can write. I can analyze. I can have discourse over very interesting, difficult topics,” he said. “What’s reaffirming for me is that there’s some essential part of me that is still here, vulnerable, but still here and with me. That gives me great hope and courage.”

Pelton said that while he doesn’t feel sorry for himself, he does “inevitably feel sad” about his diagnosis.

“On the other hand … I’m just enormously grateful for my life,” he said. “I’m grateful for this day. I’m grateful that I’ve been able to express a particular perspective on a terrible, fatal disease.”

When asked if he has any advice for those with family members who have been diagnosed with Alzheimer’s, Pelton said to continue treating loved ones as human beings.

“I think the important thing is for people to understand that their loved ones, their friends are still people and they want to be treated in that way despite the impediments that are given to them when they have this disease,” he said.

Pelton also urged people to avoid infantilizing those with Alzheimer’s.

“At least early on, I would say you need to begin to treat them as your equal,” he said. “Be patient because this disease — it flourishes at different rates and different effects for different people. But remember … they’re human.”