Dementia is associated with increased care hours provided by family or unpaid helpers, an uprise in medical service use and hospital and nursing facility stays, and financial burden, according to a new cohort study.1
With dementia projected to double in the next few decades, studying the costs effects of expensive health condition is crucial.2,3 Dementia expenses in the U.S. are estimated to rise from $321 billion to nearly $1 trillion in 2050.4 A new study led by HwaJung Choi, PhD, of the department of internal medicine at University of Michigan, wanted to compare the care use and financial status of people with and without dementia.
The study broke up participants into 2 groups at baseline: the group who developed dementia during the 2-year follow up, and the control group who had the same risk of dementia, but it was never developed over the same time frame.
To gather their participant sample, the investigators used the Health and Retirement Study (HRS), a survey of about 20,000 US adults >50 years old that collected data on sociographic characteristics, health, care use, care costs, and financial status.
The team first created a dementia sample. The requirements included that dementia had to be first observed during 1998 – 2018, they must live in a community dwelling setting, and they were >55 years old at baseline. Ultimately, the investigators identified 4378 people with full dementia for the study.
For the primary analyses, the team did propensity score matching to pick comparable cohorts.
At baseline—which was 2 years prior to the survey year when dementia was first observed—58.6% of participants were female; 37.7% were a part of a racial or ethnic minority group; 50.7% did not have a spouse; 10.8% did not have an adult child; 21.2% had at least 1 child coresident; 41.7% had less than a high school education; and 16.0% were employed. The median annual income was roughly $23,000, and the median wealth was $79,000.
The investigators examined measures of care (in a home, community-based care, or institutional care), financial status, and reliance on Medicaid. They also calculated care hours from helpers, which they calculated as monthly average hours. The “helpers” could either be family or other unpaid helpers who assisted with daily activities such as walking, dressing, bathing, eating, getting in or out of bed, or using the toilet. The team also measured how often a medically trained person came to the house to assist the older person since the last interview.
Out-of-pocket medical costs measured included expenditures related to hospital, nursing facility, physician, dentist costs, outpatient surgery costs, prescription drugs, home health care, and special facilities.
By the end, the dementia group included 2387 adults who did not have dementia at baseline but developed dementia during the 2-year follow-up. Of the 2387 participants, 8.6% had struggle with 3 activities of daily living (ADL) 5.2% had struggle with at least 3 instrumental ADL (IADL); 54.3% were cognitively impaired but did not have dementia; 18.1% had outpatient surgery; and 19.2% had at least 20 physician visits since the last interview.
At the 2-year follow-up, participants in the dementia group versus the control group had a significantly greater hypertension (6.2% vs. 4.4%; P = .005), new cancer (4.1% vs. 2.7%; P = .007), new heart problem (6.7% vs. 3.6%; P <.001), stroke (9% vs. 1.7%; P <.001), and psychiatric problems (7.5% vs. 2.1%; P <.001).
More participants had ≥3 limitations in ADL or IADL in the dementia group than the control group after 2 years. A quarter of the dementia group (25%) had ≥3 limitations in the ADL while only 10.9% had substantial limitations in the control group (P <.001). As for the IADLs, 33.6% of participants in the dementia group had ≥3 limitations while only 6% did in the control group (P <.001).
The dementia group had a significant increase in helpers, rising from 12 hours to 45.2 hours. An increase was barely observed with the control group. At baseline, 11.6% of participants in the dementia group received in-home care. After 2 years, the percentage doubled to 23.1%. Meanwhile, after the 2-year follow-up, the control group was lower by 8.8 percentage points (95% CI, 6.6 - 11.0).
“The stark difference in the level of care received from family and unpaid helpers between dementia and control groups persisted over the entire study period,” the investigators wrote.
As for hospital stays, the dementia group progressed from 35% at baseline to 46.6% in the 2-year follow up. Hospital stays did not change over time in the control group.
While roughly 3% of participants in both the dementia and control group used a nursing facility at baseline, 21% of participants in the dementia group reported staying at a nursing facility in the 2-year follow up. The control group had a moderate increase in using nursing facilities after 2 years.
Among those in the dementia group with no spouse and adult child, 5.2% used a nursing facility at baseline and 29.8% did in the 2-year follow up (P <.001).
“This study also highlights that without family members who are available and capable of providing care, older adults are much more likely to rely on long-term residential care with the onset of dementia,” the team wrote. “The effectiveness of care policies and programs may be considerably influenced by family availability, which, as has been documented, varies substantially by demographic, socioeconomic status, and birth cohorts.”
For both groups, out-of-pocket medical costs were $4000 at baseline, but for the dementia group, the costs doubled in the 2-year follow up and rose to $10,000 in the 4-year follow up. The median wealth in the wealth group started at $79,000 at baseline and reduced to $58,000 in the 2-year follow-up. Participants using Medicaid in the dementia group increased from 16.1% at baseline to 20.6% after 2 years.
“The financial burden of dementia is also substantial by imposing high out-of-pocket medical costs on patients and families, reducing their wealth and increasing the fiscal burden on society (eg, Medicare and Medicaid),” the team wrote.
- Choi, HwaJung, Langa, K, Norton, E, et al. Changes in Care Use and Financial Status Associated with Dementia in Older Adults. JAMA Internal Medicine.2023. doi:10.1001/jamainternmed.2023.5482
- Hebert LE,Weuve J, Scherr PA, Evans DA. Alzheimer disease in the United States (2010-2050) estimated using the 2010 census. Neurology. 2013;80(19):1778-1783. doi:10.1212/WNL. 0b013e31828726f5
- Rajan KB,Weuve J, Barnes LL, McAninch EA, Wilson RS, Evans DA. Population estimate of people with clinical Alzheimer’s disease and mild cognitive impairment in the United States (2020-2060). Alzheimers Dement. 2021;17(12):1966-1975. doi:10. 1002/alz.12362
- Alzheimer’s Association. 2022 Alzheimer’s disease facts and figures. Alzheimers Dement. 2022;18(4):700-789. doi:10.1002/alz.12638