Research shows the high toll of dementia on family and financial caregivers

Most people think of dementia as a disease that affects a person’s brain. But a new study shows the toll it takes on a person’s wallet and bank account – as well as the higher demands it places on their family members.

In total, people diagnosed with dementia saw their out-of-pocket spending on health care more than double and their net worth drop more than 60% within 8 years, the study found. first year since diagnosis.

Meanwhile, others of similar age and similar health, but without dementia, did not notice many changes in financial measures during that time, according to findings published in magazine JAMA Internal Medicine by a team from the University of Michigan.

The study also revealed large differences in the needs of family members. By the end of the second year after the onset of symptoms, people with dementia needed three times more care from family and friends than their peers without dementia.

People with dementia also enter nursing homes at nearly five times the rate of their peers in the first two years. People with less family support are more likely to enter a nursing home.

People with dementia are also more likely than their peers to use paid 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, has nearly doubled for people with the condition. memory loss in the first 8 years after diagnosis. Enrollment rates remained unchanged for their peers.

How the research was done

New analysis uses data from the Health and Retirement Study, an in-depth long-term study based on interviews and health checks – to reveal trends that previous studies have only used Medicare data cannot.

Researchers analyzed data from nearly 2,400 adults with dementia and an equal number of older adults who were carefully matched based on socioeconomic, health and condition characteristics. health care.

They looked at data from both groups from before the onset of dementia until eight years after diagnosis. HRS is based at UM’s Institute for Social Research.

Outstanding difference

The differences between these two groups, both in terms of care utilization and financial impact, were even larger than we expected.”

HwaJung Choi, PhD, lead author of the study, health economist and research associate professor in the UM School of Medicine’s Department of Internal Medicine

“What we found about unpaid care from family and others was the clearest and most persistent gap in care use, with an average of 45 hours per month for people with dementia, compared with 13 hours for people without dementia at the end of two years,” added. Choi, who is also a lecturer at ISR. “The difference remained at that level for eight years.”

Providing much-needed support to family caregivers is being addressed by two programs taking effect in 2024 from the Centers for Medicare and Medicaid Services: one will allow clinics to be paid money to provide caregiver education and a pilot program specifically focused on improving support and care coordination for caregivers of people with dementia.

Choi and her colleagues, including Dr. Cathleen Connell, a UM School of Public Health researcher, used a method called propensity score matching to carefully match each person with dementia. remember with someone whose health and other factors are very similar to theirs. Dementia onset was based on a validated measure using a series of data from the Health and Retirement Study.

This matching process allows researchers to see how significant the additional health care and financial burden of dementia really is for an individual.

With 6.7 million Americans currently diagnosed with dementia and the number expected to grow in the coming years, Choi says it’s important to get a realistic picture of the effects. This action informs policy decisions at the state and national level, as well as for individuals and organizations. family planning.

She noted that high rates of care hours provided by family members to people with dementia persisted over the eight years, even when home care and Paid hospitalization has decreased as more people are placed in nursing homes. Choi noted that staff shortages at nursing homes further exacerbate the need for family caregivers.

Finances vary

At baseline, before their dementia diagnosis, study participants’ assets averaged $79,000 when all assets and debts were accounted for. Overall, the wealth levels of the non-demented peer group were similar.

Both groups had annual out-of-pocket costs for medical expenses such as copays, deductibles, over-the-counter purchases, and home care of about $4,000 initially.

By the end of two years, people with dementia saw their average assets drop to $58,000 and their out-of-pocket expenses double to about $8,000. Their peers did not notice these effects.

By the end of eight years, people with dementia had spent twice as much out of pocket as their peers and saw their assets drop to an average of $30,500 while those with Their peers saw no significant reduction.

“What we really see here are two very different situations in a relatively short period of time for very similar families, defined by just a single diagnosis,” Connell said. “It is a truly striking comparison and likely driven in large part by the fact that many families ‘spend’ assets to qualify for Medicaid coverage for long-term nursing home care. “

Keeping people with dementia alive in their homes or non-nursing home settings such as assisted living is a key goal of major policy proposals — but that means Medicare, rather than Medicaid , will pay more costs.

Differences in family support

The availability of family support is an important factor in the move to a nursing home, both at baseline and at the end of eight years after dementia onset.

Nearly one-third of people with dementia who did not have a spouse or children at baseline were living in a nursing home by the eighth year after dementia onset.

The rate was nearly as high – about 1 in 4 – among people with a disabled spouse and children living nearby, and people without a spouse but with children living nearby.

By comparison, nursing home residence is half as common among people who lived with a nondisabled spouse when they were first diagnosed or who had both a spouse and a child living with them , whether or not their spouse has a disability.

Choi plans to continue her work on family dynamics related to dementia, including examining the impact of Covid-era changes in health care and nursing home visits, as well as the roles of family members other than spouses and adult children, such as grandchildren, siblings, and children. stepchild.

Choi, Connell and study co-authors Kenneth Langa, MD, Ph.D., Edward Norton, Ph.D., are members of the UM Institute for Health Policy and Innovation. UM SPH doctoral student Tsai-Chin Cho, MS, BS is also a co-author.

The study was funded by the National Institute on Aging (AG057820, AG01284626, AG009740).


Michigan Medicine – University of Michigan

Reference magazines:

Choi, H., et al. (2023). Changes in care utilization and financial status associated with dementia in older adults. JAMA Internal Medicine.

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