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- A recent report highlights the financial burden of dementia on families and the high demand the disease places on them.
- How is medical debt becoming a public health problem?
- Learn more about what donors can do about healthcare access and affordability.
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A new study shows just how much damage dementia does to a person’s bank account—as well as the higher demands it places on their family members.
In all, people diagnosed with dementia saw their out-of-pocket spending for health care more than double, and their net worth decline by more than 60%, within the first eight years of being diagnosed, the study finds.
Meanwhile, other people of similar ages and in similar health, but without dementia, didn’t see much change in either financial measure in that time, according to the findings in JAMA Internal Medicine.
The study also reveals major differences in demand on family members. By the end of their second year after the onset of symptoms, people with dementia needed three times more hours of care from family and friends than their peers without dementia did.
People with dementia also entered nursing homes at nearly five times the rate of their peers in those first two years. Those who had less family support available were much more likely to enter a nursing home.
People with dementia were also much more likely than their peers to use paid in-home care, which is often not fully covered by Medicare.
Another sign of financial distress: enrollment in Medicaid, the safety-net health care program for people living in poverty, nearly doubled for people with dementia in the first eight years after diagnosis. The rate of enrollment stayed flat for their peers.
For the new analysis, researchers used data from the Health and Retirement Study, a long-term in-depth study based on interviews and health exams—to reveal trends that previous studies using Medicare data alone could not.
The researchers analyzed data from nearly 2,400 adults who had the onset of dementia, and an equal number of older adults who were carefully matched based on extensive socioeconomic characteristics, health, and health care status. They looked at data for both groups from before the dementia onset, all the way to eight years after the diagnosis. HRS is based at the University of Michigan’s Institute for Social Research.
“What we found regarding unpaid caregiving from family and others is the most striking and persistent care use difference, with 45 hours per month on average for people with dementia, compared with 13 hours for those without, by the end of two years,” says Choi, who is also a faculty associate at ISR. “The difference remains sustained at that level across eight years.”
Providing much needed support for family caregivers is being addressed by two programs taking effect in 2024 from the Centers for Medicare and Medicaid Services: one that will allow clinics to get paid to provide caregiver education, and a pilot program specifically focused on improving support and care coordination for caregivers of people with dementia.
Read the full article about dementia finances by Kara Gavin at Futurity.