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Lori La Bey Breaks the Silence Around Alzheimer’s and Dementia

On her radio show, Alzheimer’s Speaks, Lori La Bey talks with caregivers and those suffering from dementia in the hope of connecting the community.

Lori La Bey founded Alzheimer’s Speaks Radio, a talk-radio show raising awareness about dementia, in 2011. Over the past eight years, La Bey has discussed caregiving, advocacy for better research, and her own personal experiences with her mother’s dementia on the show, which she says she started out of frustration. “I didn’t feel needs were being met at all,” she said. “As family members, we didn’t have any resources, we didn’t know where to go, we didn’t know what questions to ask.”

The torment of not knowing

La Bey’s first encounter with dementia came at age 13 when one of her favorite great aunts ended up in a nursing home. “She didn’t know who I was,” La Bey said. “The only thing people could tell me was that this is what happens when people get old. It’s part of the senility, and it wasn’t anything personal. But it was very personal to me.”

She has since made it her mission to engage people all over the world in open conversations about Alzheimer’s and dementia. “I don’t want anybody to feel the pain that our family felt,” she said.

Ticking all the boxes

Being a caregiver can be consuming and emotionally exhausting, and La Bey said that many people will lean into their caregiving roles by being extremely detail-oriented. “Most of us are empowered by a checklist. It feels good to check things off,” she said. “But when we get so focused on how we’re giving care, we end up focusing on the task and not on the emotional state of our relationship.”

When La Bey began working on Alzheimer’s Speaks, she traveled around the world to speak to both professionals and family members of people suffering from dementia. “I asked them three questions,” she said. First, “What do they want their person to know? And for most families it was typically, I love you. For professionals it was, we’re here to support you.” Second, La Bey asked them what they are focusing on in their caregiving. “Everybody gave a checklist,” she said. Finally, she asked what they wanted to remember, “because so many of us are worried that we’re going to forget who the person was.”

Cracks in the system

Hearing all of their answers, La Bey realized there were gaps in how people were thinking about care. “What I’d missed was in everybody’s tone of voice — not their words — was this subtle twang that said, ‘This isn’t how I pictured my life.’” Asking these questions to people suffering with dementia was hugely impactful, La Bey said. “They still read all of our nonverbals. Many will say that those are more important to them than our words. So when we’re off, when we’re having a bad day and we’re pretending, they feel that agitation.”

As La Bey embraced her role as an advocate, she saw how many hurdles there were for advancing the research. “When I started this, I made a commitment to myself that I would not work in a broken system,” she said. “That’s how bad I thought it was. And I still think, even though we’ve made a lot of progress, we’re still way behind the eight ball.”

Collaborating for the community

The biggest hurdle she sees is that government organizations and funding groups are not collaborating for the benefit of the community, so the community feels abandoned. “We’re not going to get people coming forward for trials, and we’re not going to engage communities if they don’t feel cared for,” she said. “I really hope there is more money, focus, and time on how we care.”

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