Patients Accept Dementia Diagnosis with Composure

By Todd Neale
ST. LOUIS, March 5 -- A medical diagnosis of dementia is not necessarily the emotional roller-coaster it's cracked up to be, researchers here found. Indeed, many patients getting the news of dementia had less anxiety following the diagnosis and did not have major swings in depression, regardless of the level of impairment, Brian Carpenter, Ph.D., of Washington University, and colleagues reported in the March issue of the Journal of the American Geriatrics Society. Likewise, the patients' companions -- spouses, adult children, other family members, and friends -- kept their emotions under control after hearing a diagnosis, the investigators found.
Action Points --->
Explain to interested patients that this study found that learning whether a patient had dementia was not met with increases in depression or anxiety, regardless of diagnosis or dementia severity.
"Disclosure of a dementia diagnosis does not prompt a catastrophic emotional reaction in most people, even those who are only mildly impaired," the researchers said, "and may provide some relief once an explanation for symptoms is known and a treatment plan is developed."
Two recent literature reviews found that physicians are hesitant to disclose a suspected diagnosis of dementia to patients. Possible reasons include being uncomfortable making a diagnosis of dementia in its earliest stages, the thought that patients with cognitive impairment will fail to comprehend the diagnosis, and the lack of effective treatments.
Another reported concern is that the diagnosis will result in excessive emotional reactions, including depression or suicide.
To examine the validity of this last possibility, Dr. Carpenter and colleagues recruited 90 patients who were already involved with the Memory and Aging Project at Washington University's Alzheimer's Disease Research Center. A companion for each patient was enrolled to evaluate the effects of a diagnosis on caregivers.
Each participant completed a questionnaire that was used to rate levels of depression and anxiety prior to the patients receiving a physical and neurological examination.
Anxiety was assessed with the State-Trait Anxiety Inventory and depression was measured using the Geriatric Depression Scale.
Following the examination, patients and companions were brought in for the formal diagnosis.
Anxiety and depression were then reassessed by telephone interviews an average of 2.7 ± 2.0 days after diagnosis.
More than two-thirds (69%) of the patients were told they had dementia, with the rest receiving a diagnosis of no dementia.
More than a quarter (28%) of patients said they previously had been told by a physician that they might have dementia; 48% of companions said the patients had dementia, revealing a significant discrepancy in recollection (P<0.05), according to the researchers.
Compared with baseline, patients had a nonsignificant mean increase of 0.29 points on a depression scale of 15 after learning their dementia status (P=0.18), regardless of diagnosis or dementia severity.
Companions had a significant mean decrease of 0.43 points on the depression scale (P=0.03); however, "despite the statistical significance, this represents a clinically minor shift in depressive symptoms," the researchers said.
Patients with high levels of anxiety before diagnosis had a significant mean decrease of 12.60 points on an anxiety scale of 80 (P<0.001) after finding out whether they had dementia.
Companions with high levels of anxiety were also less anxious following diagnosis (mean decrease of 6.44 points, P<0.001).
Patients and companions with low levels of anxiety at baseline had no significant changes.
Scores on the anxiety scale decreased significantly in patients and companions who had previously been told the patient might have dementia (mean decrease 7.13 points, P<0.001) and in those who never received that information (mean decrease 3.83 points, P<0.001).
To explain the lower levels of anxiety, Dr. Carpenter and colleagues suggested that "individuals who were given a clean bill of health were reassured, because they learned that nothing was wrong or that there might have been an explanation for their symptoms (e.g., other psychiatric or medical condition) that, although deserving attention, did not have the same gravity as dementia."
"In contrast," they continued, "individuals who were told that they had dementia may have taken some comfort in having an official diagnosis and explanation for symptoms." These patients "have an opportunity to plan and prepare for the future while they are still capable, to learn about community resources and supports, and begin pharmacological interventions that may slow disease progression."
According to the researchers, the study was limited by the assessments of depression and anxiety, which may not have detected subtle changes. Evaluating these factors at only two time points may have restricted the researchers' ability to measure the "ebb and flow" of emotional reactions.
Also, participants who are cognitively impaired may have difficulty describing their mood, they said.
Generalizability of the results may be limited by the fact that the study was conducted in a dedicated Alzheimer's disease research center. "That name alone is likely to influence expectations," the researchers said.
The Alzheimer's Disease Research Center and one of Dr. Carpenter's co-authors are supported by grants from the National Institute on Aging. Support for this study was provided by a grant to another co-author from the University of Missouri Alzheimer's Disease and Related Disorders Program.
The authors reported no conflicts of interest.
Primary source: Journal of the American Geriatrics SocietySource reference:Carpenter B, et al "Reaction to a dementia diagnosis in individuals with Alzheimer's disease and mild cognitive impairment" J Am Geriatrics Soc 2008; DOI: 10.1111/j.1532-5415.2007.01600.x.