lori la bey

Photo: Chad Holder

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SLIDESHOW

Lori La Bey

The Alzheimer's Empath

"How did you feel when you learned you had Alzheimer's?" That's one of Lori La Bey's favorite questions to ask on her biweekly podcast, Alzheimer's Speaks Radio. One response, from an 85-year-old fellow named Bob, was something anyone dealing with Alzheimer's could relate to: "Terrible!" But La Bey wasn't done. In her Minnesota-nice accent, she got Bob to talk about how he came out of his dark period and became a late-blooming painter and poet. "If the Alzheimer's train is coming," he said, "you have to start to live your life now."

La Bey, 58, loves showcasing the surprisingly not-awful aspects of Alzheimer's. Her mother lived with the disease for 30 years—plenty of time for La Bey to come up with strategies to help them feel connected and close, like saying "After a while, crocodile," an old in-joke that still made them laugh. It turned out that having a positive, proactive attitude helped everyone involved. Working in real estate, La Bey helped seniors transition into assisted living; whenever she talked with staff there about her mom, they encouraged her to share her perspective with other Alzheimer's families, telling her, "All they hear is gloom and doom. They need some inspiration and hope."

That urging eventually led La Bey to launch Alzheimer's Speaks, with experts sharing coping strategies and research and, groundbreakingly, people with Alzheimer's talking about what the disease has taught them. More than 400 episodes later, it reaches 2,000 to 4,000 listeners every week.

In 2012, La Bey launched the "Dementia Chats" video webinar series, in which small groups of people with the condition, plus dementia behavior specialist Eilon Caspi, talk via videoconference about, say, caring for pets or how to make good use of smartphones and apps. La Bey toggles among the screens, encouraging the quieter guests to open up and skillfully redirecting the conversation away from those who hold the mic a little too long. But it's a stereotype that people with dementia go off track and ramble all the time, she's quick to note. "Sometimes they're the one bringing me back to the topic." The technology chat is now used by a UK hospital in educational materials. "They—like most people who watch the videos—have been shocked at how well people can communicate about their own disease symptoms and progression," says La Bey. "There are just so many voices to raise, and I want to get everybody talking."

—Adrienne Day