Real social costs of caring for cognitively impaired elders

March 23, 2011, University of Michigan

The real social costs of cognitive impairments among the elderly are being greatly underestimated without counting care given to older Americans who have not yet reached the diagnostic threshold for dementia.

That is the central finding of a University of Michigan study published in the current issue of the . The study is based on data from 169 primary of individuals with dementia or cognitive impairment. The sample is part of the Aging, Demographics and Memory study, which examined a nationally representative sample of men and women age 70 and older as a supplement to the U-M Health and Retirement Study, funded primarily by the National Institute on Aging.

"We were surprised to learn how much time family members spend caring for loved ones who have some cognitive impairment, but whose impairments are not severe enough to be classified as dementia," said Gwenith Fisher, a psychologist at the U-M Institute for Social Research (ISR). "These caregivers are dealing with many of the burdens of caring for an older, cognitively impaired family member, but they may not be eligible for much of the help available unless the diagnosis is dementia."

Most of the caregivers in the study were female family members, most often daughters, of the care recipient. Just over 70 percent were caring for a family member diagnosed with dementia, while just under 30 percent were caring for a family member diagnosed as having ", not dementia" (CIND). The researchers found that dementia caregivers spent approximately nine hours a day providing care, compared to about four hours a day provided by CIND caregivers. Between one-quarter and one-third of those with CIND were receiving some kind of family care.

Dementia is characterized by significant losses in as well as difficulty with everyday functioning or activities. Individuals with CIND do not typically need care-giving due to cognitive reasons alone. Care recipients with CIND in this sample primarily needed help due to other health problems, physical or sensory impairment, such as blindness. However, milder cognitive weaknesses associated with CIND can exacerbate difficulties with daily functioning, thereby adding to caregiver burden beyond those caused by a health or sensory problem alone.

Individuals with CIND may forget details of a recent conversation, but they would remember having the conversation. They may repeat the same story more than once over a period of a couple of days.

They may have more trouble balancing the checkbook, and planning and cooking more than just a simple meal, but may still be able to do these tasks. They might get somewhat disoriented in less familiar places, but they would be able to figure out how to find their way.

In contrast, individuals with dementia may forget most of a recent conversation and may not remember having the discussion at all. They may ask the same question multiple times within a very short period of time. They are not able to plan or prepare more complicated meals or balance the checkbook. They become disoriented in familiar places and they are not able to problem solve to find their way.

About 44 percent of dementia caregivers, compared to about 27 percent of CIND caregivers, reported experiencing symptoms of depression in the last week, including feeling lonely and sad. Both groups of caregivers reported equivalent amounts of physical and emotional strain, but nearly all also reported some benefits of caregiving. These benefits included feeling useful, feeling closer to the care recipient, and feeling able to handle most problems and prevent the care recipient from getting worse.

According to Fisher, the study shows that CIND caregivers provide a great deal of informal assistance to older family members and should be eligible to obtain services available to caregivers of those with dementia. "A more comprehensive service system would benefit both and CIND patients and their caregivers," she said. "Supporting CIND caregivers may help reduce the burdens of caregiving, help people to continue providing care, and prevent or postpone the need to place impaired family members in institutions."

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