ANN ARBOR—Caring for older Americans with dementia costs more than $18 billion a year in additional time spent by family and friends, according to a University of Michigan study published in the November issue of the Journal of General Internal Medicine.

Based on data from the U-M Health and Retirement Study, funded by the National Institute on Aging, the study is one of the first to use a large, nationally representative sample of older Americans to estimate the additional time and associated costs of providing informal care to those with dementia.

The Health and Retirement Study is conducted by the U-M Institute for Social Research (ISR), the world’s largest academic survey and research organization.

The analysis of more than 7,000 Americans age 70 and over showed that those with cognitive impairments received substantially more informal help than those with normal cognitive function. This help includes assistance with basic daily activities such as bathing, dressing, eating, and fixing meals, and with less frequent activities including grocery shopping and managing money.

“We found that the care-giving burden on family members increased substantially as cognitive impairment worsened,” says Kenneth M. Langa, M.D., Ph.D., lead author of the study. “Those with mild dementia received 8.5 more hours of care per week than elders with normal cognitive function, who received only 4.6 hours of help per week. And those with severe dementia received 41.5 more hours of help per week than elders with normal cognition.”

Costs of informal caregiving to elders with dementia

With the prevalence of Alzheimer’s disease, the most common cause of dementia, projected to more than triple in the United States over the next 50 years, from about 2.3 million to 8.7 million cases, the study findings underscore the importance of including valid estimates of unpaid care-giver time when evaluating future clinical and policy interventions aimed at reducing the impact of dementia on individuals, families, and society.

“Helping those with dementia places a significant burden on both families and society, and this burden increases sharply as the level of cognitive impairment progresses from mild to severe,” says Langa, assistant professor of internal medicine at the U-M Medical School and faculty associate at the U-M Institute for Social Research.

Overall, the study showed that 10 percent of the respondents displayed evidence of cognitive impairments consistent with dementia. Of those, 43 percent were mildly impaired, 27 percent had moderate impairment, and 31 percent were severely impaired.

To estimate the yearly costs of caring for older family members with dementia, the researchers calculated the number of weekly hours of help respondents reported receiving, adjusted for age, income, chronic health conditions besides dementia, and other factors, multiplied by the 1998 national average wage for a home health aide of $8.20 per hour, and then multiplied by 52 (weeks per year).

“Both physicians and policy makers will be confronted with difficult choices regarding the allocation of health care resources as the U.S. population ages and the prevalence of dementia increases,” says A. Mark Fendrick, M.D., study co-author and U-M associate professor of internal medicine. “Since about 35 percent of the care-givers are spouses, elderly women may be especially vulnerable to the potential negative consequences of providing this level of care.”

According to Langa, the study used methods that led to conservative estimates of informal care-giving time and cost. It did not include, for example, the time spent monitoring and managing the behavioral problems associated with dementia, such as paranoia, hostility and wandering. Nor did the study include the costs associated with the support families and friends typically provide after individuals with dementia move to nursing homes.

Funding for the analysis was provided by grants from the Robert Wood Johnson Foundation, the National Institute on Aging, the Michigan Center on the Demography of Aging, the Michigan Alzheimer’s Disease Research Center, Aetna Quality Care Research Fund, and Merck and Company, Inc.

Established in 1948, the Institute for Social Research (ISR) is among the world’s oldest survey research organizations, and a world leader in the development and application of social science methodology. ISR conducts some of the most widely-cited studies in the nation, including the Survey of Consumer Attitudes, the National Election Studies, the Monitoring the Future Study, the Panel Study of Income Dynamics, the Health and Retirement Study, and the National Survey of Black Americans. ISR researchers also collaborate with social scientists in more than 60 nations on the World Values Surveys and other projects, and the Institute has established formal ties with universities in Poland, China, and South Africa. Visit the ISR Web site at www.isr.umich.edu for more information.