What we know is not enough.

There's still plenty to learn about the cost of Alzheimer's care

ONE THING WE KNOW FOR SURE: THE cost of Alzheimer's disease to American society is large and growing as our society ages and prevalence of the disease rises. In fact, Alzheimer's has been estimated to be the third most expensive disease in the United States (behind heart disease and cancer).

The cost of Alzheimer's is more narrowly relevant to different players in the health care system. To the Medicare program, Alzheimer's represents not only a condition found to be predictive of higher overall costs, but one that also functions as an effect modifier of the relationship between common diseases such as heart disease and stroke and the cost of care. Thus, the Medicare program is interested in both the cost of Alzheimer's to the program in aggregate as well as what cost findings might suggest regarding treatment of demented persons for common acute illnesses.

For families caring for persons with Alzheimer's in a community setting, informal caregiving in the form of I/ADL support represents a massive cost burden (roughly two-thirds of the total) either in the form of out-of-pocket payments to caregivers or through the contribution of hours directly.

Cost to the Medicare program is actually reduced if that person lives in a nursing home according to recent studies, even after adjusting for co-morbidities, disability, and severity of cognitive impairment. This points out that caregivers in nursing homes must make decisions daily concerning whether to seek treatment for a demented patient in the acute health care sector. These decisions may often be difficult, especially if no explicit wishes were made clear prior to the elderly person's becoming demented.

For nursing home administrators, whether Medicaid reimbursement appropriately accounts for the dementia status of residents is key to providing the needed staffing and services for high-quality care, as well as to the bottom line.

What do we still need to know?

There are many perspectives from which the cost of Alzheimer's is relevant, and we have much information. But do we know all we need to know regarding the cost of Alzheimer's and what that means for decisions that must be made by administrators of long term care facilities and caregivers? The clear answer is no.

Varied analyses on the cost of Alzheimer's have been undertaken from different perspectives (e.g. societal, programmatic like Medicare, the family) and using different methodologies, but findings on cost have not been systematically tied to outcomes. We know much more about the cost of Alzheimer's than we do about what the money that we spend has bought.

My recent study of the cost to Medicare of treating persons with Alzheimer's went to great pains to account for differences that might explain cost differentials, such as incontinence, ADL limitations, and their recent illnesses. [1] But, I had no ability to measure whether those persons with Alzheimer's who had a lot of money spent on their behalf by Medicare were better off than were those who got less care. I couldn't measure any patient outcome other than mortality. Neither could I measure how the family caregivers caring for community-dwelling elders with Alzheimer's felt regarding their care. Or how their own health was affected.

What we need is to measure costs precisely, but then to inform these costs with meaningful information regarding outcomes for both the person with Alzheimer's as well as for the caregiver or family. What is needed is a clear assessment of how both cost and outcome change for persons with Alzheimer's who are treated in diverse types of settings.

There is a certain poverty in the state-of-the-art research on the cost of Alzheimer's because of our inability to inform our cost findings with measured benefits of different settings. Until we can measure both costs and benefits together and across disparate treatment settings, all the research on the cost of Alzheimer's can do is to point out that the disease is a large burden on society. What we really need now is some better evidence regarding what we get for what we pay in the different treatment settings for Alzheimer's. This is the kind of information that families, caregivers, and administrators of institutions caring for persons with Alzheimer's really need.

Donald H. Taylor Jr., PhD, is assistant research professor of public policy, Terry Sanford Institute of Public Policy, Duke University, Durham, N.C.

Reference

(1.) Taylor Jr. DH, Sloan FA. How much do persons with Alzheimer's disease cost medicare? J Am Geriatr Soc. 2000;48:639-646.