Each month, we’re featuring an advocate who engages with policymakers to ensure priorities that improve the lives of people impacted by Alzheimer’s and all other dementia remain top-of-mind in Congress.
Pamela Talley of Laurel, Maryland has been married to her husband Kenneth for 28 years. During the COVID-19 pandemic, Pamela started to notice something was different with her husband. He was diagnosed with vascular dementia in 2021 and then Alzheimer’s in 2022. But it wasn’t the first time their family had faced challenges together.
“Our family was no stranger to tough times and buckling down. Our youngest adult son, who’s still in school, has a diagnosis of autism. So we know about adaptability, flexibility, learning new things, and making adjustments to meet everyone’s needs,” said Pamela. “But when Alzheimer’s hit, that was pretty hard."
“Things were fine until they weren’t fine. We found out [his dementia diagnosis] just a couple of days before Christmas 2021,” said Pamela.
During the time after Kenneth’s diagnosis, Pamela struggled to find information and resources. “I knew that there were things I needed to do really quickly. But I didn't know what to do first, and I was hoping that I could get some quick information from someone who would understand our profile as a family,” said Pamela.
At the time of her husband’s dementia diagnosis, their oldest daughter was going to college. Pamela was also trying to navigate a plan for her son and juggle everything. While going through this frustrating and stressful time, Pamela found the Alzheimer’s Association while browsing on Facebook.
Seeing information about Maryland’s State Advocacy Day, Pamela decided to go. “I didn't know anyone, but I registered, and I signed up for transportation. I got on a bus, sitting in a seat by myself,” said Pamela. “But then I walked into a room, and there was what felt like 500 people all in purple, and I was so surprised, and I was so thankful. I couldn't believe there were so many people there, some who have been there for 5 years, 10 years, 20 years.”
“All I kept thinking about is that they had been walking this journey, fighting this fight and making movement before I ever got there,” said Pamela. “And I was so thankful for what they had already done.”
“I had to join in. I jumped in with both feet,” said Pamela.
After the State Advocacy Day concluded, Pamela spoke to an Alzheimer’s Association staff member. “I said, ‘If you ever need me for anything else, just give me a call.’ I thought I'd see her next year, but the next week she gave me a call.” Pamela’s member of Congress, Rep. Glenn Ivey (MD-04), was soon having a town hall meeting. Pamela attended, and now serves as the Alzheimer’s Ambassador for his office.
When describing her new volunteer role, Pamela says she’s been trying to send a message to his office that she’s here for the long term. “We will have a relationship. We will do what we can to keep these federal priorities elevated. Because our collective community, not only here in Maryland, but across the country, really needs his support,” said Pamela.
“I do have family and friends that say, ‘Oh, you know, maybe you shouldn’t be doing that. You need to really be practicing self care.’ But honestly, this feels like self care to me, when I feel like I am doing something that can make a difference,” said Pamela. “I’m in a situation where there is hope. I participated in the Walk to End Alzheimer’s for the first time last year. And for the first time in history we raised over $100 million. I was a part of that.”
“This is a great thing to do. This makes me feel good. This is self care,” said Pamela.
At events like Walk and State Advocacy Day, Pamela sees a common thread: community. “I think that in this journey [with dementia], families and individuals can become isolated. And I think it’s really, really beneficial and helpful to stay connected to community.”
Along her advocacy journey, Pamela has made friends. “I was partnered with this wonderful person [during last year’s State Advocacy Day] that I felt an automatic kinship with, and we made all these wonderful plans to fight together. We were going to be Bonnie and Clyde within this district. But unfortunately her mother passed away,” said Pamela. “She's not able to participate in the same way as she was. But I know her heart is here. But the thing that I feel so proud of is that while she’s not able to be here, there’s always someone standing there that can carry your torch. I’m happy to stand in that place. And one day someone may be standing in that place for me.”
Unsurprisingly, one of Pamela’s favorite quotes comes from Margaret Mead: “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”
“The quote always reminds me that during the greatest challenges in life, how important community is,” said Pamela. “When I feel like I'm alone in any particular journey, I think about that quote instinctively.”
“Sometimes you don't have to know everything. It's about your intent. Do you have a real intent and a desire to make change, to add your voice?” said Pamela. “And I think that from the heart it's really the thing that's most needed, to really make that connection and to keep the priorities up front and to keep the movement going.”