Dozens of Marylanders, including many from Carroll County, wore purple shirts and sashes in Annapolis last week and gathered to ask the Maryland General Assembly to join them in the fight against Alzheimer’s disease.
Eldersburg resident Brenda Fried served as her mother’s primary caregiver for five years following her mother’s Alzheimer’s diagnosis. Fried moved back to Maryland from Louisiana, gave up her corporate career and lived off of her individual retirement account as bills piled up.
“It changed my life,” Fried said. “That’s the kind of sacrifice that caregivers have to do.”
Westminster resident Julie Peatt Cassaday also left her full-time job to serve as caregiver to her father and mother and wants to ensure that individuals placed in similar situations have the financial resources to stay afloat.
“I really believe in the whole idea of the caregivers being able to take time for themselves,” she said. “Oftentimes they’re suffering. They’re losing both mental health and physical health while they serve as caregivers.”
Fried, Cassaday and other advocates met on Feb. 16 with their state representatives to garner support for three legislative priorities: passage of SB 228, which requires each of Maryland’s Area Agencies on Aging to establish outreach programs for dementia caregivers; $3.5 million in permanent funding to help implement Maryland’s Alzheimer’s State Plan; and $21 million for the expansion of the Department of Aging’s Senior Care program.
Alzheimer’s is a progressive disease that weakens neurons in the brain, resulting in initial memory and thinking loss and eventually leading to motor impairment and death. More than 110,000 Marylanders ages 65 and older were living with Alzheimer’s in 2020, according to the association, out of about 6 million cases nationwide.
While understanding the prevalence of the disease is important, the association wants to make sure Advocacy Day goes beyond statistics.
“We are trying to move legislation with our advocates’ stories,” said Lynn Phan, the association’s advocacy manager for Maryland and Washington, D.C. “There’s a lot of things that go untold with this disease so this is an opportunity to bring awareness.”
Raising visibility for caregivers is especially important, according to Phan, as family members often become nurses overnight when a loved one receives a diagnosis. The association found that of the 242,000 Alzheimer’s caregivers in Maryland in 2021, 27.7% suffered from depression and nearly 68.8% had their own chronic health conditions.
“It’s my favorite color,” said Dayton resident Richard LePore, 76, on Feb. 16 as he gazed at the sea of purple, the official color of the Alzheimer’s Association, a nonprofit advancing care and research for Alzheimer’s and dementia around the world.
LePore was diagnosed with the disease in 2021 and was joined by his daughter, Andi, at the association’s 2023 Maryland Advocacy Day. The annual event brings together volunteers from across the state to urge lawmakers to increase awareness and funding for Alzeimer’s patients, their families and caregivers.
“I’m just trying to get the word out,” Andi said. “I found out that there’s not a lot of information out there other than the Alzheimer’s Association, so I’m trying to get Maryland to get [Alzheimer’s] in the forefront.”
One of the day’s youngest advocates was Glenelg High School senior Anshuta Beeram, 17, who spoke with Sen. Katie Fry Hester and Del. Chao Wu, Democrats representing Howard and Montgomery counties.
Beeram began volunteering for the association after studying Alzheimer’s as part of an independent research project her junior year. Beeram, who wants to pursue a career in medicine, was initially interested in the scientific aspects of the disease but soon found herself drawn to the personal stories of patients and their families.
At Glenelg, Beeram helped put together 100 care packages for local seniors last year and led a fundraiser for the association.
“I was just exploring different ways that I could share what I had learned interacting with patients,” she said. “It taught me so much about compassion, bravery, resilience that people faced, not only suffering with the disease but also taking care of those who had it.”
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Hoping to take her activism a step further, she traveled to Annapolis for the first time last week to participate in Advocacy Day. Despite not having any family members afflicted with Alzheimer’s, Beeram believes it’s important for younger generations to learn more and support community members living with the disease.
“I think raising awareness about the disease might compel people to get involved with research, which is something that you can do at any age,” she explained. “Maybe some brilliant person gets involved with research and comes up with a cure or treatment.”
Early-onset Alzheimer’s rates are climbing, with a 200% increase in diagnosis rates for ages 30 to 64 between 2013 and 2017, according to a Blue Cross Blue Shield study.
“It’s killing younger and younger,” Phan said. “The more we spread awareness, the more we get more funding for research and resources.”
While she never imagined herself presenting to state senators when she started high school, Beeram said she enjoyed the experience and wants to continue advocating for change.
“If we invest in it now and fight for it now we might be able to come up with better interventions in the future, so that my generation, my classmates and my peers have the ability to look forward to a future that’s not impacted by Alzheimer’s,” she said.
More information can be found at: https://www.alz.org/ and the Alzheimer’s Association’s 24/7 help line can be reached at 800-272-3900