Why Alzheimer’s disease is driving some Vermonters into debt

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BURLINGTON, Vt. (WCAX) - Alzheimer’s disease drives families into debt. That’s a big reason why lawmakers and advocates say they’re working to prioritize care for Vermonters with dementia.

The local chapter of the Alzheimer’s Association estimates that 26,000 caregivers, like friends and family, worked 37 million hours in 2021 without pay. That’s nearly $760 million worth of work. The association says that’s because many people struggle to afford the cost of professional care.

Advocates explain it’s a potentially decades-long, debilitating disease that can drain your bank account for the rest of your life.

“Whether it’s your spouse, your children, your grandchildren, you shouldn’t be required to use all of your savings, all of your retirement for this and have nothing left behind for the people that you work for -- your family,” said Meg Polyte, the policy director for the Alzheimer’s Association of Vermont.

Advocates say within the state systems it’s unclear how to best use long-term care and medical insurance, respite grants and other financial resources to make them last. A vast majority of Vermonters with Alzheimer’s are over the age of 60. It’s especially difficult if the patient is diagnosed with younger-onset Alzheimer’s in their 40s or 50s, which limits their access to many supports. However, Vermonters can also utilize the Area Agencies on Aging, which provides case management, caregiver support, health and wellness resources, and respite grants.

Advocates estimate Medicaid costs of caring for people with Alzheimer’s were $116 million in 2020, and that’s projected to increase more than 25% by 2025. But the Vermont Disabilities, Aging, and Independent Living Department (DAIL) says some people are not financially or clinically eligible for Medicaid.

“That’s where there’s a primary gap, is that Medicaid is only able to support a certain percentage of the population with Alzheimer’s and dementia, but not everyone with Alzheimer’s and dementia. And so, how do we put in place other supportive services for those who might be a little over income?” said Angela Smith-Dieng, the director of the department’s Adult Services Division.

Smith-Dieng says the small cohort of individuals with younger-onset Alzheimer’s usually relies on their primary care provider for support. She says the state’s goal is to better educate physicians so they can connect patients to the right resources. Right now, many don’t have the expertise to properly advise people diagnosed under the age of 60. She says providers must be knowledgeable enough about the disease to connect families with social workers, mental health counseling, and case management, for example.

A Vermont Senate bill moving through the Statehouse, S.206, plans to make that improvement, but advocates say much more work needs to be done even if it passes into law. The bill was sent to the House Committee on Appropriations Thursday.

Smith-Dieng attributes higher Alzheimer’s and dementia rates to an aging population and better detection and diagnosis.

Polyte says she hopes S.206, which is purely a planning bill, will pave the way for future funding and infrastructure opportunities.

Upward of 1,700 Vermonters 65 years and older will be diagnosed with Alzheimer’s disease by 2025, a more than 30% increase from 2020, according to the Alzheimer’s Association. Advocates say the numbers are likely far higher due to underreporting and misdiagnoses, and the totals do not include those under 65 years old living with the disease.

You can call the 24/7 Alzheimer’s Association hotline at (800) 272-3900 to speak to a live person about resources for those impacted by Alzheimer’s or other dementias.

Vt. bill aims to improve state Alzheimer’s coordination