April 11, 2008
Many doctors and family members hesitate to tell a loved one that they likely have Alzheimer's disease, fearing that it may cause undue upset or distress. But a new study shows that there may be many benefits to telling patients that they have the disease, and that the diagnosis may actually bring relief, at least in the short term.
Overall, patients told of their diagnosis did not experience an uncontrollable surge in depression or anxiety. Rather, most were relieved to have an explanation for their symptoms. They were also glad to have the opportunity to participate in planning for their futures, and relieved that help was at hand.
"The major finding is that both patients and their families feel relief, not increased anxiety, upon learning the diagnosis," said study coauthor John C. Morris, M.D., professor of neurology and director of the Alzheimer's Disease Research Center at Washington University School of Medicine in St. Louis. "Nobody wants to hear the diagnosis of Alzheimer's disease, but even that is preferable to recognizing there's a problem and not knowing what it is. At least having the diagnosis allows people to make plans for the future, including treatment as appropriate."
Medical advances have made it possible to diagnose likely Alzheimer's at very early stages, but a 2004 review of research found about half of all physicians were still reluctant to inform patients of an Alzheimer's diagnosis. While many physicians fear a dementia diagnosis would only further upset an already troubled patient, this follow-up study found quite the opposite.
"We undertook this study because we wanted there to be some data out there that addressed this question and that we could show to physicians and say, 'Most of the people don't get depressed, upset and suicidal. So, this fear that you have about telling them and disturbing them is probably not legitimate for most people,'" said coauthor Brian Carpenter, Ph.D., associate professor of psychology at Washington University.
The study, published in the current Journal of the American Geriatrics Society, followed 90 individuals and their caregivers as they came to the university's Alzheimer's Disease Research Center for an evaluation. Sixty-nine percent eventually got a diagnosis of Alzheimer's disease. Patients were followed for two days before getting the diagnosis, and for two days after, with special attention paid to the emotional aspects of hearing the news. On average, among both caregivers and patients, no significant changes in depression were noted after the diagnosis, and anxiety decreased substantially. Of course, this study did not address the feelings of the patients at later times, weeks or months after being told.
One reason an Alzheimer's diagnosis can be comforting to both family members and patients, Dr. Carpenter suggests, is that it provides an explanation for what's been going on with the patient. Caregivers, he notes, are often quick to attribute symptoms of dementia to the person, rather than the disease, and patients wonder if they are going "crazy." This study confirms that most patients, regardless of their degree of impairment, tend to experience a sense of relief after getting their diagnosis.
This study is one of the first where caregivers have also been asked about mood and emotions. "In this current study, we were interested in gauging psychological reactions shortly after receiving the diagnosis," Dr. Carpenter said. "That's why we did a follow-up phone call within a couple of days of their evaluation." Most physician guidelines instruct doctors to tell patients when they suspect a diagnosis of Alzheimer's or dementia. "It's just taking awhile for the clinicians to catch up," Dr. Carpenter said.
Dr. Carpenter believes that the number of physicians not telling their patients has gone down in recent years due to a greater public awareness about Alzheimer's. But, he notes, we are "probably where we were at 10 or 15 years ago with cancer," when many doctors didn't tell their patients they had the disease. "We know now that that's improper, and that everybody needs to know if they have cancer," he said. "We're going to get there with Alzheimer's disease."
Earlier diagnoses may allow for earlier intervention to delay the effects of Alzheimer's and dementia, the authors note. Medications currently on the market can delay symptoms in a minor way, in some patients, and may delay the need to place someone in a nursing home.
"There are some real practical and financial advantages of even these small incremental gains that we're getting from the medications now," Dr. Carpenter said. "If you can get an extra three to six months in your own house before you have to go to a nursing home, that's a big deal."
Perhaps more importantly, providing a diagnosis as early as possible gives people a chance to prepare for what is coming. "They know that things are going to get worse rather than better, and they know that there's going to come a time when they're not going to be able to do the things they can do now," Dr. Carpenter said. "They can get ready for what's coming and we can connect them to support services. We can get their family ready...so they'll be better prepared."
To learn more about the diagnosis of Alzheimer's disease and information on optimal care, visit www.ALZinfo.org, The Alzheimer's Information Site.
Brian D. Carpenter, PhD, Chengjie Xiong, PhD, Emily K. Porensky, MA, et al: "Reaction to a Dementia Diagnosis in Individuals with Alzheimer's Disease and Mild Cognitive Impairment," Journal of the American Geriatrics Society, March 2008, pages 405--412