Delaware Alzheimer’s deaths spike over last two decades amid gap in care

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The journey through Alzheimer’s begins with subtle shifts — a forgotten name here, a lapse in judgment there, and a diminishing motivation to tackle daily tasks. Simple chores become challenging, and recent memories blur. These early indicators, often dismissed as normal forgetfulness, could be early warning signs of Alzheimer’s disease.

A new report found Delaware’s Alzheimer’s rate is higher than the national average and has been growing.

The 2024 Alzheimer’s Disease Facts and Figures report offers an extensive overview of the latest data on Alzheimer’s mortality, caregiving, dementia care workforce, and care costs across the U.S. and Delaware.

Delaware’s higher rate may stem from the state’s appeal to retirees, said Sean Dwyer, the government affairs director for the Alzheimer’s Association’s Delaware Valley Chapter.

“Delaware is getting older,” he said. “We have a strong retirement community here, particularly in the south. And again, as these numbers grow or as our aging population grows, the prevalence is bound to grow with us … The number of people aged 65 and older with Alzheimer’s disease is up from 19,000 to 22,300 individuals from the last point of data.”

He says there is an increase in Alzheimer’s-related deaths. Statistics reveal a significant 246% increase in those deaths in Delaware from 2000 to 2021, surpassing the national mortality rate. This translates to 381 lives lost to the disease.

What might be responsible for that increase? Dwyer points to the stigma surrounding aging.

“We’re very much still dealing with the stigma that Alzheimer’s and dementia is a normal part of aging, and it’s not, it’s a chronic disease just like anything else,” he said.

“We have a gap in care navigation”

Another factor contributing to the high prevalence of the disease and its related fatalities in Delaware is the insufficient support and guidance available to caregivers. Dwyer said many caregivers are underpaid and face considerable pressure, leading to the development of their own health issues like depression, as well as emotional, physical, and other health-related challenges.

“There are currently 31,000 caregivers putting in roughly 46 million hours of unpaid care work, and about 61.8% of those caregivers have their own chronic health conditions,” he said.

“Right now, we have a gap in care navigation. And so if you have a loved one or someone who’s suffering from dementia, Alzheimer’s disease, there’s a lot of things you have to do in order to achieve diagnosis,” he said. “We have a gap in the workforce overall, with a medical workforce that’s trained and prepared to both recognize and interact with someone with dementia on caregivers specifically.”

According to Dwyer, as of 2021, only approximately 18 geriatricians are serving a population of 22,300 individuals diagnosed with Alzheimer’s in the state.

Wilmington resident Carol Amos, aged 67, is an author who has made it her mission to increase awareness of Alzheimer’s and offer support to caregivers. Having lost her mother to Alzheimer’s in 2014, Amos spent more than 11 years caring for her, and she continues to provide care for her husband. She recalls the hardship of helping her mother.

“Nobody told me I was going to a doctor’s appointment,” she recalled her mom would lament.

Managing numerous appointments became overwhelming for Amos, but having her brother’s support — despite him having to travel from Cincinnati to Delaware — eased the burden.

“I would make the appointments, she needs to see the eye doctor once a year, she needs to see the dentists twice a year,” she said. “He [her brother] would do probably 15 or 16 appointments a year. But, you know, I still had to do it if there were emergency appointments and things like that. But it made my life a lot easier.”

Despite the challenges, Amos remains committed to ensuring her mother’s quality of life.

“This is her last stop, and I’m gonna make her life as enjoyable as possible,” she said. “We went to some family gatherings, we went to a wedding. You make life as enjoyable for her knowing that this is the end of her life.”

Caring for her mother made Amos feel driven to advocate for others in similar situations. This commitment inspired her to write the book “Hope for the Alzheimer’s Journey,” sharing her mother’s narrative to offer guidance to those navigating the disease—a resource she longed for during her own caregiving experience.

She also dedicates her time to participating in a committee with Easterseals Delaware and Maryland’s Eastern Shore, which offers grants and resources for caregivers. Her main objective is to advocate for expanded access to respite care.

“We really need to improve that gap. We need to find some creative solutions to both incentivize people to work in this area, specifically in elder care,” said Dwyer. “We do need to find some creative solutions for funding Medicaid. The Medicaid cost of caring for people with Alzheimer’s here in Delaware is $253 million, which is a pretty significant burden on the state’s Medicaid coffers.”

In addressing some of those issues, the Delaware Valley Chapter of the Alzheimer’s Association is currently in the process of establishing a partnership with the Delaware Division of Public Health “to get them to implement our healthy brain initiative and get that messaging into the community,” Dwyer said. “Trying to spread the word and trying to overcome the stigma that there are ways you can mitigate dementia and there are services available.”

While services may be limited, advocates recommend calling the Alzheimer’s hotline at 1-800-272-3900 for any assistance caregivers may require.