Dementia Diagnosis in Individuals With Alzheimer's Disease
Objectives: To examine short-term changes in depression and anxiety after receiving a dementia diagnosis.
Design: Pre/post survey design.
Setting: Alzheimer's Disease Research Center.
Participants: Ninety individuals and their companions.
Measurements: Fifteen-item Geriatric Depression Scale and 20-item "state" version of the State-Trait Anxiety Inventory.
Results: Sixty-nine percent of the individuals were diagnosed with dementia; two-thirds of those were in the earliest symptomatic stages of dementia that, in other settings, is considered to represent mild cognitive impairment. No significant changes in depression were noted in individuals or their companions, regardless of diagnostic outcome or dementia severity. Anxiety decreased substantially after diagnostic feedback in most groups.
Conclusion: Disclosure of a dementia diagnosis does not prompt a catastrophic emotional reaction in most people, even those who are only mildly impaired, and may provide some relief once an explanation for symptoms is known and a treatment plan is developed.

Recent advances in clinical evaluation, imaging technology, and neuropsychological testing have made it possible to diagnose dementia early in its natural history. For instance, conditions such as mild cognitive impairment (MCI) that were proposed as prodromal states for Alzheimer's disease (AD) are increasingly recognized as the earliest symptomatic stages of AD for most individuals. Early diagnosis is advantageous for a number of reasons. First, it enables people to plan for their future before cognitive impairment interferes with judgment and reasoning. Second, having a formal diagnosis may help explain symptoms, clarifying cognitive problems that were distressing, in part, because their cause was unknown. Finally, early pharmacological intervention may slow the rate of disease progression for a brief period in some people.

Despite these benefits, two recent literature reviews suggest that, even when physicians suspect that a person may have dementia, disclosure of a dementia diagnosis is not standard clinical practice. One study found that, although 80% of geriatric psychiatrists and geriatricians saw benefits to disclosing a dementia diagnosis, only 40% consistently did so. Similar statistics are seen in other studies that chronicle physician practices and patient and caregiver
experiences. These figures are noteworthy, considering that people say they would prefer to know about a suspected dementia diagnosis and that clinical practice guidelines are nearly universal in their advocacy for diagnostic disclosure.

Because diagnostic testing cannot presently confirm the diagnosis of dementia, many clinicians may be uncomfortable making a diagnosis of dementia in its earliest stages, preferring instead to wait for the development of full-blown dementia. Additional factors cited by clinicians that contribute to reticence to disclose a dementia diagnosis include the lack of comprehension of people with significant cognitive impairment, as well as the modest and narrow benefits of treatments. Another reported concern is that receiving a dementia diagnosis may overwhelm people. Some clinicians worry that receiving a dementia diagnosis might trigger depression or even suicide, but only limited empirical data exist regarding the latter concerns.

One study of 24 individuals with dementia26 found that some people could remember few concrete details about receiving their diagnosis but recalled initially feeling shocked, angry, and depressed. At the same time, many individuals felt that the diagnosis had validated their experience of cognitive difficulties and had provided positive opportunities for personal growth. In another study surveying patients with dementia who received a diagnosis through mail, 25% said that they found something upsetting in the letter, but another 25% said they felt optimistic after reading it. Another study provided case reports on three people who entered psychotherapy after diagnostic disclosure, one of whom reacted with fear and another with anger but a third who felt relief at knowing what was causing her problems. Finally, a survey of caregivers in an AD support group revealed that 29% thought that giving the diagnosis to their family member had not been helpful, and 51% said their relative with dementia had "reacted poorly," although no specifics were provided about the reactions.

Although previous studies provide limited evidence that some people may react negatively to a dementia diagnosis, those studies have weaknesses such as small sample sizes, lack of a control group without dementia, retrospective designs, follow-up periods that are not clearly characterized, and descriptions of emotional reactions that are broad and anecdotal. To the authors' knowledge, no studies have examined psychological reactions to a dementia diagnosis prospectively, documenting specific changes using standardized assessments. In addition, previous studies have not examined the effect of diagnostic disclosure on individuals at the earliest symptomatic stages of dementia. Individuals with early-stage dementia might react differently than individuals with more-severe impairments. Finally, previous research has not examined the reactions of caregivers, who a diagnosis also affects, and its implications for their own future.

The purpose of the current study was to examine the psychological reaction to receiving a dementia diagnosis in individuals attending an Alzheimer's Disease Research Center (ADRC). How symptoms of depression and anxiety changed after receiving diagnostic results was examined in individuals seeking evaluation and in their companions. In addition, whether pre-evaluation level of distress, dementia severity, and pre-evaluation suggestion of dementia by another healthcare professional were related to level of distress was examined after formal evaluation and diagnostic feedback.