Family caregivers face many challenges in helping their loved ones who are living with dementia, not the least of which is navigating the insurance landscape for long-term care. That’s according to the results of a newly published study in the Journal of the American Geriatrics Society, which found that insurance-related challenges contribute to the caregiver burden.
“Family caregivers of people with dementia lack centralized or standard support to gather needed information about insurance options, which contribute to making do with existing insurance coverage rather than actively seeking out alternative options,” the authors wrote.
“While almost all people with dementia qualify for Medicare due to their age, Medicare does not cover long-term home care, which often is the most impoverishing aspect of care,” they added.
The researchers, from the Icahn School of Medicine at Mount Sinai in New York, conducted semi-structured interviews from June 2022 to January 2023 with 15 family caregivers of people living with dementia who were eligible for Medicaid and Medicare and were enrolled in home-based primary care in New York City.
Those living with dementia, according to the study, were 88 years old, on average, and all but one required assistance with all basic activities of daily living. Family caregivers, on
Average, were 60 years old and had been caring for the family member living with dementia for years.
From the interviews, three major themes emerged, the authors said: challenges of Medicaid enrollment, making do with existing insurance, and mistrust of the insurance system.
Navigating Medicaid enrollment was a major stressor for the caregivers. Of the 15 families interviewed, only two had loved ones that already were enrolled in Medicaid when they took over caregiving responsibilities.
“I’m going to say [the initial period] was probably the highest stress, because her care, it was just so overwhelming, everything were were dealing with and then [Medicaid enrollment] kind of added another layer that we thought would be just the easiest and it turned out to be the hardest,” one interviewee said.
Some caregivers opted to make due with existing insurance coverage and didn’t look into other plans, such as Medicaid managed plans, dual eligible special needs plans (D-SNPs) or Medicare Advantage, according to the interviews.
“I don’t have to be a rocket scientist. Just make sure that she has the basic coverage that she needs … so just leave her insurance,” one respondent said.
Lastly, family caregivers expressed mistrust of the insurance system. They said they view the insurance companies as looking only at the bottom line and not ensuring quality care for individuals. Also, they felt that they needed to be vigilant to ensure that their loved one was not being taken advantage of.
“The challenges family caregivers experience when navigating insurance for their family members with dementia contribute to caregiver burden. Robust and centralized professional support for family members both immediately after a family member’s dementia diagnosis and as the disease progresses could increase caregivers’ capacity to make insurance decisions that best support their family members with dementia,” the researchers concluded.
