Fans ‘didn’t care if he messed up’: Glen Campbell’s doctor discusses his struggle with Alzheimer’s

Glen Campbell’s decades-long musical career came to an end Tuesday, when the 81-year-old country music superstar died after a six-year struggle with Alzheimer’s disease.

He leaves behind a sprawling songbook and one candid documentary, 2014’s “Glen Campbell … I’ll Be Me,” which follows the singer as he deals with his diagnosis and embarks upon a farewell tour, performing the final renditions of “Rhinestone Cowboy” and “By the Time I Get to Phoenix” in the presence of his family, his band, and his thousands of fans, crisscrossing the country before his disease forces him off the stage and into an around-the-clock treatment facility.

Campbell’s choice — to go public with his diagnosis and then invite a camera crew to track its every effect — made waves in the Alzheimer’s field, said Dr. Ronald Petersen, the Mayo Clinic neurologist who treated the singer. Patients and their families can feel alienated, ashamed, and alone after such a diagnosis, making Campbell’s willingness to be candid a potential light in the dark, said Petersen, who leads the Mayo Clinic Alzheimer’s Disease Research Center.

STAT talked to Peterson about how “I’ll Be Me” came to be and the legacy it left for his famous patient. The interview has been condensed.

How did Glen come to the decision to be so public about both his diagnosis and its effects on his life?

The story of how that came to be is kind of interesting. Glen cut that album, “Ghost on the Canvas,” in about 2010, and when an album is finished, entertainers typically go on the road and do a tour. But it was about that time that he was diagnosed with Alzheimer’s disease, so he, the band, the family, the whole group was faced with a decision: What do we do now? So they sat down and had a very intimate discussion, and he, his family, the group said, “Let’s do it.”

Of course, what was unusual was that they did a documentary about it. It’s one thing to announce, “I have the disease,” and then go away for months or years; it’s another thing to say, “Yes, I have Alzheimer’s disease, and not only that, I’m going to display how it’s playing out with me, my family, etc.,” and that’s how the documentary was made.

How big of a departure is that from what patients usually do?

Well, for one, he was willing to come out and to disclose his diagnosis, and then to let somebody chronicle it over time, because that’s the scary part.

And I must say that some of the people in his band really had some concerns that he was going to embarrass himself on the stage. One of his stage managers, Bill Maclay, said at the outset, “I thought this tour was going to be people coming to watch a NASCAR race looking for the crashes.” And in fact, he said, “I couldn’t have been farther from reality.” The fans came: They loved him. They knew this was going to be the last time they’d see Glen Campbell, and they didn’t care if he messed up. If he sang the same song twice or had to stop in the middle of the song — didn’t matter. They were there to hear and support Glen Campbell.

That’s very encouraging, I think, as to how society is dealing with this disease. And hopefully we can translate that into improved funding and participation in clinical trials.

In your practice treating patients with Alzheimer’s, do they often bring up Glen and his movie?

Absolutely. I think it makes people feel a bit more comfortable. You know, “Glen Campbell had this. He experienced this. His family, Kim, his wife, went through this and, gee, we’ve had a similar set of circumstances.”

I think one of the most impactful features of the film was the fact that he did develop some behavioral difficulties toward the end of the tour and the end of the documentary. Kim and the family and the band had to deal with this on a day-to-day basis, and I think that was somewhat comforting to the average person out there who may be experiencing similar difficulties in the behaviors of their loved ones and are saying, “Gee, I’m no different from Kim Campbell; she went through the same thing.”

There hasn’t been a new treatment for Alzheimer’s in more than 15 years. What is the conversation like with patients who have just been diagnosed, considering treatment options are still so limited?

It can be challenging, but … we do have some drugs on the market that treat the symptoms of the disease and improve quality of life. We don’t have any disease-modifying therapies, but clinical trials are underway and it might be important for you to consider these yourself. It may or may not help you, but it’s likely to help the person coming after you. And also we don’t have to focus totally on pharmaceutical treatments for the disease, because there are certain behavioral and lifestyle factors, things you can do to try to preserve your function as the disease progresses.

Glen and the movie may give some credence to that insofar as his wife, Kim, said that at least through the first year or so, she thought Glen remained relatively stable. And she thinks it was the social and intellectual stimulation, allowing him to do what he had done throughout his entire life — that is, perform — that kept him going at a higher level for a longer period of time than if they would have pulled back at the time of diagnosis.

What’s do you think will be the legacy of ‘I’ll Be Me’ in the Alzheimer’s field?

I think it brings the conversation up to the surface and people feel more comfortable talking about it. “Yeah, I’ve got it, just like Glen Campbell had.” And it’s not so much of a stigma anymore. It can happen to anybody.

We went through this with President Reagan and his announcement. I think all of these kinds of admissions will, in fact, enhance enrollment in clinical trials. Look, if we’re going to conquer this disease, we really need to do the appropriate research, and that research requires participation by you and your family. And I think certainly that’s a message that Glen would endorse.