By Tim Mastro

DOVER — As a real estate agent, for every house Traci Brown sells, she donates a portion of her commission to the Delaware Valley chapter of the Alzheimer’s Association.

It’s in memory of her mother, Beatrice Evans, who passed away in May 2020 due to vascular dementia. Because it was early in the pandemic and family members were not allowed to visit nursing homes, Ms. Brown could not bring her mom the things she enjoyed, like leftovers, Chick-fil-A salads, vanilla milkshakes and Dunkin' coffee.

She also was not able to say goodbye.

And that is what turned Ms. Brown into an advocate. Last month, she traveled to Washington, D.C., for the Alzheimer’s Impact Movement Advocacy Forum — the nation’s premier Alzheimer’s disease advocacy event, held in person this year for the first time since 2019.

Ms. Brown had never been to the forum and joined two other Delaware supporters, Pat Risher and Anjanette Kichline, who also lost parents to the disease. The three were there to make a case to federal legislators to advance policies improving the lives of all Alzheimer’s patients, as well as those with other forms of dementia.

“There is an enormous burden Alzheimer’s has on individuals living with the disease and their families in this country,” Ms. Brown said. “This must be a public health priority for our nation.”

Ms. Brown met with Rep. Lisa Blunt Rochester, D-Del., who lost a grandmother, great-grandmother and close neighbor to dementia. The congresswoman is a lead sponsor of the bipartisan Equity in Neuroscience and Alzheimer’s Clinical Trials Act.

The ENACT Act would increase the involvement of underrepresented populations in clinical trials by expanding education and outreach, encouraging the diversity of clinical trial staff and reducing participation burden.

According to statistics from the Alzheimer’s Association, Black Americans are two times more likely to develop Alzheimer’s but account for only 5% of clinical study participants.

“I didn’t know this until I was at the forum,” Ms. Brown said. “Research hasn’t yet identified the cause. Higher rates of cardiovascular disease may play a role, but we’re not sure yet. That was something big for me, to know that. Since then, I’ve made it a point to make that part of a conversation with people in my circles, like church members or family members.”

Ms. Brown said her mother was diagnosed with mild cognitive impairment at age 65, which forced her to retire. Her daughter took on the role of caregiver for the next eight years.

“Dementia slowly stripped her from her memories, reasoning and day-to-day tasks,” Ms. Brown said. “She was shuffled between my house and her home that she shared with my brother and his young family. With my brother traveling due to his career, leaving Mom alone was not safe. As her hallucinations and disruptive behavior increased, I found myself being more of a referee and less of a daughter.”

They continued the routines that brought Ms. Evans the most joy, Ms. Brown said, such as shopping, going out to eat, manicures, getting her hair done, listening to music, attending church and watching her granddaughter ride horses.

“Our roles had changed,” Ms. Brown said. “Mom needed me as her advocate, someone who took the time to live in her new world. I protected her as much as I could, as much as she would do if it were me.”

For most individuals diagnosed with dementia, the burden of care falls on family members. Delaware only has about 18 geriatricians and will need to nearly triple its dementia workforce to care for the 10% of those 65 and older who are projected to have dementia in 2050, according to the association’s 2022 Alzheimer’s Disease Facts and Figures report.

The number of individuals affected by Alzheimer’s is expected to rise in the coming years. Without a cure, Delaware is expected to see a 21% increase in the number of residents living with the disease by 2025, more than double the anticipated 9% growth in the state’s population over that time, per the report.

The assessment also showed that about 19,000 Delawareans are currently living with the illness.

This is why funding is crucial, Ms. Brown said, so, during their visit to Washington, the advocates spoke in support of several other bipartisan proposals that would focus on the need to fund dementia research, build a better path to dementia care, fund the Alzheimer’s public health infrastructure and provide support to dementia caregivers.