Anthony Brookhart sat down in the Columbus office of Ohio Rep. Angela King on a breezy Tuesday afternoon in late April. Clad in a purple button-down shirt, a silver cross necklace, and a golden letter V – for vim, vigor, and vitality – pinned to his collar, the Wapakoneta native came prepared to sway Rep. King toward support of two house bills currently in committee.
The halls of the Ohio Statehouse are not typically a safe place for queer Ohioans like Brookhart, amidst a barrage of anti-LGBTQ bills in the state. Rep. King herself is the co-sponsor of one bill to ban drag in public and another to increase challenges to trans candidates. Last summer, she was seen publicly protesting against the 2023 Pride celebration in her town of Celina.
But on this day, Brookhart – a pastor at St. Paul United Church of Christ in Wapakoneta –had to set that aside. He and his family were visiting the Statehouse to plead a different case, one no less personal.
“We represent thousands of people who can’t be here today,” Brookhart said. “Because they’re busy taking care of family members with Alzheimer’s.”
The Brookharts’ Story
Brookhart was with his grandmother Helen Schramm in June 2013 when her doctor gave her a dual diagnosis of Alzheimer’s disease and Lewy body dementia – and then the doctor went on his way. No resources, no direction, no idea of what support was needed or even available. Just a diagnosis and “Good luck.”
Feeling lost, Brookhart stayed up through the night searching the Internet for answers – and discovered the Alzheimer’s Association. The next day, he reached out to his local chapter to find support for the family’s matriarch and discovered a wealth of compassion, knowledge and resources for caregivers. Since then, the Brookhart family has stepped up to advocate for patients and families battling dementia, including participating in walks, fundraisers, state and federal lobbying sessions, and the Music and Memory program.
“I want to see a world where other families didn’t have to go through what we did,” said Brookhart.
A Focus on Public Health
On April 23, Brookhart gathered in the Columbus Statehouse with over 200 advocates from across Ohio for the 25th annual Alzheimer’s Association State Advocacy Day.
The group met with representatives in the Ohio Statehouse about two bills currently in committee that represent strides in medical advancement, treatments and public health policy – as well as hope for millions of patients and families in Ohio:
- HB 397 would add specific Alzheimer’s and dementia awareness topics to the state’s public health campaigns – including early warning signs, information to reduce risk factors and cognitive decline, assessment tools and the importance of early detection and diagnosis.
- HB 24 would expand insurance coverage – without which, the Alzheimer’s Association states, “dementia diagnoses may take up to two years, increasing the long-term costs to the individual, family and the state.” This is especially important as early detection of Alzheimer’s is more possible than ever due to improvements in biomarker testing, but the advancements in testing and treatment have yet to be reflected in many patients’ insurance coverage.
This year was Anthony Brookhart’s ninth Advocacy Day in 10 years, and he attended with his whole family – husband Tyler Spears, parents Beth and Randy Brookhart, and exchange student Elia.
Their first visit was to the office of Rep. King, who represents the 84th House District in Ohio and is on the state’s Public Health Policy Committee. Brookhart and his family shared their experiences and history of advocacy work with Haley Fisher, King’s aide. Fisher felt a personal connection – she told the group that she lost her grandfather to Alzheimer’s and could relate to what the Brookharts had to say.
Their message was carried throughout the day: that Alzheimer’s Disease is not a mysterious, rare occurrence and is a public health crisis. And it affects people of all genders, races, and ability levels, with approximately one in three older adults receiving a dementia diagnosis. Treating dementia as a public health issue means that it becomes a routine part of the healthcare discussion for all patients and primary care providers, so that in the future, no one will have to receive the diagnosis as Anthony’s family did–with no resources or support on offer.
“If we had known earlier, we could have better prepared her, better prepared our family, and better prepared my grandfather for what was to come,” says Brookhart.
Special guest speakers over lunch included Ursel J. McElroy, director of the Ohio Department of Aging; Dr. Douglas Scharre, director of the Ohio State University Center for Cognitive and Memory Disorders; Trey Addison, regional public policy director of the Alzheimer’s Association in Ohio; State Representatives James Hoops (R-Napoleon) and Rachel Baker (D-Cincinnati), co-sponsors of HB 397; and a video from Gov. Mike DeWine, further underscoring how Alzheimer’s advocacy cuts across party lines.
The lunch also featured a recorded message from Brookhart himself. In the video, Brookhart shared his grandmother’s story and urged those in attendance to advocate for the passage of these two bills.
“We must do better, Ohio,” he said.
After lunch, the 220 advocates from across the state of Ohio met with more state representatives in support of the two bills for the rest of the day. For the Brookharts, that list included state Reps. Melanie Miller (District 67) and Darrell Kick (District 98), as well as state Sen. Matt Huffman (District 12).
A Family Legacy
Inspired by his work with Music and Memory, Brookhart had Grandma Helen’s uplifting motto – “Keep a Smile on Your Face and a Song in Your Heart” – set to music in her final days, in the hope it would help her remember and connect with family members.
“I watched her listen to it and then all of a sudden, it hit. That Irish glint in her eye came back and she said, ‘That’s my song!’ It was listening to that song that would bring her out of the fog and give me moments of wonderful clarity with my grandmother.”
By Brookhart’s estimate, Helen was showing early signs of Alzheimer’s at least 10 years before she received her diagnosis. Three and a half years after her diagnosis, in December 2016, Helen passed away surrounded by the family members who continue her legacy of smile and song.
It’s the Brookharts’ hope that when Alzheimer’s and other dementias are treated as the public health crisis they are, other families will be able to hold onto their loved ones longer, get a diagnosis sooner and receive cutting-edge treatments and – one day – a cure. 🔥
IGNITE ACTION
- Volunteer or donate to the Alzheimer’s Association.
- Donate your gently used music players to Music and Memory.
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