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Patti Davis Founds New Support Group To Help Alzheimer’s Caregivers

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Patti Davis is working to give family members, friends and caregivers of Alzheimer’s patients something she didn’t have—a place where people could share their emotions and struggles, and be supported.

Davis, daughter of former President Ronald and Nancy Reagan, has founded the support group Beyond Alzheimer’s at UCLA’s Ronald Reagan Hospital, “to help people with a loved one going through it now, or those who’ve been through it.”

When her father was diagnosed in 1994, there was “nobody to talk to.”

This turned out to be a good thing, Davis says, because it forced her to chart “her own way through a long 10-year journey” with her father.

“I didn’t have friends going through similar situations to tell me how bad it would be,” Davis said. “I know the isolation.”

At the time of Reagan’s diagnosis, and after he wrote his moving letter to America, the Reagans became the most public family dealing with the disease.

“We were the poster family for Alzheimer’s when the disease wasn’t discussed,” says Davis.

She often found herself stopped by total strangers telling her intimate details of what they were going through with a parent or spouse.

“People felt comfortable telling me things they would never share with friends,” Davis said.

So she started thinking about how she could help. “After my father died, myself and other friends didn’t know where to go for professional help. We needed something like this.”

After waking at 3 a.m. one morning the idea for Beyond Alzheimer’s was born.

Davis approached Dr. David Feinberg, president of the UCLA Health System, who was not only enthusiastic about the group, but insisted it not be limited to just loved ones of those being treated at UCLA.

“It was just a no-brainer,” Davis said. “The whole goal of a hospital is to provide compassionate care for people so they don’t think of it as big and scary, where they might be treated like a number. We recognized family members are also in need of care.”

Part of the reason the group is called Beyond Alzheimer’s, is that it’s also about family and caregivers who often find themselves in the middle—between the patient, doctors and hospitals. “It becomes your story and you have to remember you’re in the picture too—you need time for yourself and time away,” Davis advises.

The free Beyond Alz-heimer’s meetings are facilitated by Davis and Dr. Linda Ercoli, UCLA’s director of geriatric psychology. She provides the clinical aspect, while Davis, who lectured extensively on the subject while her father was ill, brings personal experience.

Attendees can talk if they want to, but usually participants simply want to be someplace where everybody else understands and identifies with what they are experiencing, Davis explained.

“This disease creates a whole cauldron of emotions,” Davis admits. “There is death before dying. You see the person passing while they’re still here. Watching the end you feel guilty; and you can’t tell others or expect them to understand unless they’ve had the same experience. Friends may be sympathetic, but maybe not identify, so you keep it to yourself.”

What helped Davis, she recounts, is realizing that her father’s soul couldn’t have Alzheimer’s. “His language, mental acuity and memory were falling away, but his soul was in there. I kept remembering that. I found there could be communication—emotional communication—in total silence.”

Beyond Alzheimer’s meets from 6:30-7:30 p.m. Mondays (the next meeting is Jan. 9) in UCLA’s Ronald Reagan Hospital at 757 Westwood Plaza, Room 3-3102.

For more information, call 310-825-8253.
—Steve Simmons

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