Study shows caregiver and patient costs rise as symptom severity increases in Alzheimer's disease

February 04, 2002

In one of the largest national studies of its kind, UCLA researchers found that both caregiver and patient health-care costs dramatically rise as symptoms worsen in patients with Alzheimer's disease.

The study, published in the February issue of the Journal of the American Geriatrics Society, showed that for a six-month period costs could rise to more than $30,000 per patient, depending on severity of symptoms.

"As Alzheimer's disease progresses, the costs to society in terms of direct health-care costs and loss of productivity of caregivers are astronomical," said Dr. Gary Small, lead investigator and Parlow-Soloman Professor on Aging, professor of psychiatry and biobehavioral sciences at UCLA, and director of the UCLA Center on Aging.

The study found that as symptoms progressed, costs rose. For the six-month study period, costs approximated $20,000 for a typical high-functioning patient compared with $35,000 for a patient with severe dementia.

For example, caregivers missed 2.6 days of work to care for a patient with mild symptoms, compared with 8.7 days to care for a patient with severe symptoms. Hospitalizations increased from 1.8 to 3.4 days, depending on the severity of symptoms.

"The study provides an impetus for earlier treatment to help keep Alzheimer's disease at a less-severe stage for longer," Small said.

According to Small, most Alzheimer's disease patients live at home and are not institutionalized. Relatives, such as a spouse, son or daughter, usually provide care. The burden on caregivers is heavy -- and the bulk of costs (almost 90 percent according to the study) are from caregiver costs, including the lost productivity of missed days of work and hours per week spent caring for loved ones.

Researchers sent a survey to 1,700 non-institutionalized patients and their caregivers in households throughout the country. Patients represented all stages of the disease. Disease severity was measured using a scale of symptom frequency -- such as prevalence of memory loss and depression. Activity and physical functioning were also gauged -- such as the ability to dress, prepare food and shop.

Costs totaled an average of $29,209 per patient over a six-month period. Direct costs of care averaged $3,129 and included hospital stays, physician visits and emergency room visits. Caregiver costs averaged $26,080, calculated by missed days of work and hours spent per week caring for patients.

Small said that most Alzheimer's disease patients are not taking available medications that could help slow down the progression of the disease. Studies have shown that these medications may be cost-effective; however, more studies need to be completed.

Lack of recognition and education about Alzheimer's disease may be keeping patients from receiving optimum treatment. Patients and caregivers often mistake early symptoms of Alzheimer's disease for normal aging changes, believing that early signs of dementia may be "just senility." Physicians need more training in recognizing early signs, perhaps by incorporating more effective tests for cognitive functioning in routine medical exams. Small said that medications are often stopped too early as well.

More help for caregivers may also control costs, Small said. According to the study, caregivers spent an average of 85 hours per week providing care to patients.

"Over $100 billion is spent annually on Alzheimer's disease, making it the third most costly disease in the United States after heart disease and cancer. At least half of these costs are related to caregiving," said Dr. Howard Fillit, executive director of the Institute for the Study of Aging in New York City. "Dr. Small's study will help increase our understanding of the magnitude and sources of caregivers costs as Alzheimer's disease progresses."

Fillit said that the data might be especially critical to employers of caregivers and to health-insurance companies seeking better systems to improve quality and manage costs.
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For more information about Alzheimer's disease, please contact the Alzheimer's Association at (800) 272-3900 or www.alz.org.

The study was funded by Janssen Pharmaceutica Products LLP. The data was collected by the Alzheimer's Disease Caregiver Project, conducted by Consumer Health Sciences, Princeton, N.J.

University of California - Los Angeles

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