A recent Harvard School of Public Health survey of more than 2500 adult in six different countries has found that Alzheimer’s disease is more dreaded than any other disease save cancer. The same survey also demonstrated that 85% of respondents would want to know their diagnosis as soon as possible if they began to show symptoms. The survey was reported recently at the Alzheimer’s Association International Conference (AAIC) meeting in Paris, France.
At this time the diagnosis of Alzheimer’s disease is a clinical one, as there is no reliable diagnostic test. Many researchers are hard at work developing tests that detect Alzheimer’s disease earlier in its course. Research presented at the AAIC aimed at earlier detection included studies of modalities such as MRI, PET scanning to detect the amyloid protein thought to mediate cognitive decline, and tests of spinal fluid for amyloid or other putative toxic protein products. Researchers hope that earlier detection will spur the development of new drugs to prevent or treat this truly horrifying disease.
All this emphasis on earlier detection places in sharp relief a dirty little secret about the diagnosis of Alzheimer’s – physicians frequently don’t diagnose Alzheimer’s, even in patients who have had the disease for years.
As a geriatrician, I’m frequently asked to evaluate patients with memory loss and other geriatric syndromes. Most of these patients see their primary physicians faithfully for treatment of hypertension, diabetes, hyperlipidemia and other chronic diseases common in older adults. By the time the family has brought the patient to me for an evaluation of memory loss, signs of cognitive decline usually have been present for many months or even years. These signs include poor compliance with prescriptions, inability to perform instrumental activities of daily living, or asking the same question repeatedly. Not only do these patients score poorly on standardized mental status instruments, but they often don’t remember their ages, birthdays, former jobs, or how many grandchildren they have. In other words, with few exceptions, the diagnosis of Alzheimer’s disease is not difficult to make, especially in patients whose disease has been present long enough to reach the moderate stage.
Why don’t primary care physicians diagnose Alzheimer’s more frequently? Some don’t feel that their training is sufficient, preferring to leave these patients to their psychiatric or neurological colleagues. Others don’t want to open a true Pandora’s Box and expose a patient and family to a disease whose impact is so devastating and for which there are few resources. I believe a major culprit is time. Primary care physicians must move quickly from one patient to another for myriad reasons, including high overhead, reduced reimbursement and the increasing burden of paperwork. Patients with Alzheimer’s disease do not complain to their doctors of memory problems. Instead, they may complain of difficulty sleeping, anxiety, or simply feeling poorly. Physical examination and laboratory testing are usually unrevealing. Eliciting the information from family necessary to make a diagnosis of Alzheimer’s disease takes time.
Even if people say they want to know as soon as possible if they have Alzheimer’s disease, why should physicians make this diagnosis early? After all, treatments are at best palliative. But determining that Dad’s surliness is due to a disease and not normal aging, recognizing the need to plan for future health care costs, and putting in place the necessary assistance to maintain a patient in his home are all valuable outcomes of early diagnosis. There is no reason to wait for research that will deliver better diagnostic tools – earlier diagnosis of Alzheimer’s disease is possible now.
While I am heartened by the attention that this disease is finally getting and hopeful about the research that may lead to treatment and a cure, I believe that more can and should be done now to diagnose Alzheimer’s with the tools we currently have at hand – observation, evaluation, and experience.
James P. Richardson is Chief, Geriatric Medicine, St. Agnes Hospital in Baltimore, MD.
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