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Alzheimer's patients and their families struggle to navigate care in CT, report finds

File, 2023: Sindymarie Sanchez, a case manager with Hispanic Coalition of Waterbury, sits with Aurea Maldonado (left) and Hilda Batista (right) during an presentation in Spanish by Maria Canales on recognizing and managing Alzheimer’s symptoms.
Mark Mirko
/
Connecticut Public
File, 2023: Sindymarie Sanchez, a case manager with Hispanic Coalition of Waterbury, sits with Aurea Maldonado (left) and Hilda Batista (right) during an presentation in Spanish by Maria Canales on recognizing and managing Alzheimer’s symptoms.

Alzheimer's patients and their families struggle to navigate care nationally and in Connecticut, according to a new report from the Alzheimer’s Association.

Caregivers say they struggle with cost of care, multiple doctors and getting appointments. Payment models, a lack of community-based resources, and finding help so caregivers can take a break also present challenges, according to the report.

“The big takeaway from this year’s special report is that dementia caregivers want and need help navigating the complex health care system and accessing community-based services,” said Ginny Hanbridge, executive director, Alzheimer’s Association, Connecticut Chapter in a statement.

In Connecticut, roughly 80,000 people aged 65 and older live with Alzheimer’s dementia and are cared for by family members. Those caregivers provided roughly 200 million hours of unpaid care valued at $4.3 billion in 2023, according to the report.

More Black (43%) and Hispanic (45%) caregivers say they provide care on a daily basis compared to white (31%) caregivers.

Caregivers also struggle with their own health issues, according to the report.

Roughly 6 in 10 caregivers in the state reported having at least one chronic condition including stroke, heart disease, diabetes or cancer, compared to caregivers of people without dementia or non-caregivers.

The health of caregivers can be impacted by the stress of caring for an Alzheimer’s dementia patient, the report says. One in three caregivers also reported having depression.

As caregivers face the stress of nursing a loved one, they also face the complex – and stressful – task of navigating the health care system. For that, the majority of caregivers say it's helpful to have a patient navigator who could help locate specialists, schedule appointments and obtain test results.

“We hope our report will encourage health systems to think more intentionally about the challenges facing dementia caregivers and formalize dementia care navigation programs to help them,” Hanbridge said.

Across New England, the growing number of Alzheimer’s patients is causing another stress – a shortage of qualified doctors to treat them.

Vermont and Maine are named “dementia neurology deserts” in the report, meaning they are projected to have a shortfall in neurologists able to meet the demand for Alzheimer’s care in 2025.

Nationally, more than 1 million additional direct care workers are needed to meet care demands by 2031, according to the report.

Sujata Srinivasan is Connecticut Public Radio’s senior health reporter. Prior to that, she was a senior producer for Where We Live, a newsroom editor, and from 2010-2014, a business reporter for the station.