Rehoboth's Aimee Isaac attends D.C. forum

A Rehoboth Beach woman is lobbying for Alzheimer’s patients and families in both Dover and Washington, D.C.

Aimee Isaac’s father was 63 years old when he was diagnosed with cognitive impairment, which turned out to be Alzheimer’s disease and Lewy body dementia.

Her family found that the struggles of Alzheimer’s reach beyond the disease.

“This is a disease that has no cure, no prevention and no treatment,” the 40-year-old Isaac said. “It was just a really awful experience. It felt like we never had any answers, support or resources through the whole process. As he would go from one stage to the next, it was a constant chaotic state.”

According to the Alzheimer’s Association, Alzheimer’s is a type of dementia that interferes with memory, thinking and behavior. Symptoms worsen progressively over years, from mild memory loss to an inability to respond to one’s environment. Typically, a person with Alzheimer’s lives for four to eight years after diagnosis.

Isaac was disturbed by the lack of adequate resources for Alzheimer’s patients and caregivers and wanted to help others, so she started working with the Alzheimer’s Association. With about 1,200 advocates from across the country, she lobbied legislators in Washington, D.C. from March 31 through April 2 at the annual Alzheimer’s Impact Movement Advocacy Forum.

“The forum prepares attendees to meet with elected officials to share our stories, but it is also a place to connect with others who are living with Alzheimer’s or other dementias in some way,” Isaac said.

The advocates lobbied for several bills.

The Improving Health Outcomes, Planning and Education for Alzheimer’s Act is in committee in the Senate. If passed, the bill would provide funding for outreach to physicians to educate them on Alzheimer’s services covered by Medicare.

“We need care coordinators that work out of a doctor’s office, and doctors can actually code those services through Medicare, but very few do,” Isaac explained. “Only 1 percent of seniors on Medicare are receiving this service. It would make such a huge difference.”

Isaac and her fellow advocates also asked Congress to appropriate $20 million in funding to the Building Our Largest Dementia Infrastructure for Alzheimer’s Act, which would create public health infrastructure to implement effective Alzheimer’s interventions, such as increasing early detection and diagnosis. It became law last year, but the funds have yet to be appropriated.

“Just simple things like billboards and commercials, connecting people to the resources that are already available,” Isaac said.

Special to Isaac in particular is the Younger-Onset Alzheimer’s Disease Act, since her father was so young when he was diagnosed. People under the age of 60 can’t access some of the existing programs that those over 60 can, so this bill would provide assistance, support and respite for them and their families. It was recently introduced in the House and Senate.

But regardless of onset age, according to Isaac, the nation is sorely lacking in resources. Delaware is no different.

“We have some adult daycare facilities, and some of these places will bus people, but when you have dementia, riding on a bus for 45 minutes isn’t feasible,” Isaac said.

Sometimes, Alzheimer’s patients become extremely agitated and need immediate care and medication, During what Isaac calls “crisis mode,” MeadowWood, a behavioral health facility in New Castle County, is often the only option for them.

On top of inadequate resources, Alzheimer’s patients and caregivers – and local governments – struggle with cost.

According to the Alzheimer’s Association, in 2019 Delaware will spend $238 million through Medicaid caring for Alzheimer’s patients. That is expected to rise by about 30 percent by 2025.

Isaac’s family was fortunate because her father had good income and health care, and a financial advisor who advised him to buy long-term care insurance.

“My mom is involved in support groups for people who don’t have that,” she said. “It will bankrupt people. A lot of people end up having to go on Medicaid, or get an elder law attorney to protect their assets so that when they pass, their spouse isn’t bankrupt.”

Lt. Gov. Bethany Hall-Long’s Behavioral Health Consortium has been dealing mostly with the opioid addiction epidemic since its creation in 2017. However, Hall-Long invited Isaac to be a part of its Family and Community Readiness Committee as an advocate for Alzheimer’s patients and families.

“Alzheimer’s and addiction are kind of head to head for which is worse in terms of what it’s costing Delawareans and families,” Isaac said. “Both affect families so severely and both need the public health approach. There’s a lot that, strangely enough, go hand in hand with those two.”