November/December 2012

Dementia and DSM-5:
Changes, Cost, and Confusion

By James Siberski, MS, CMC
Aging Well
Vol. 5 No. 6 P. 12

DSM-5 changes will require providers to learn the differences between major and minor neurocognitive disorders and to explain the differences and their significance to patients and their families.

The Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association and used for diagnosis by mental health professionals in the United States, describes symptoms for all mental disorders. Its primary components are the diagnostic classifications, diagnostic criteria sets, and descriptive texts. DSM-I was initially approved in 1951 and published the following year. Since then it has been revised several times and resulted in DSM-II in 1968, DSM-III in 1980, DSM-III-R in 1987, DSM-IV in 1994, and the current version, DSM-IV-TR, in 2000. Historically, it has been both praised and criticized.

It is anticipated that the DSM-5 will be released in May 2013 during the American Psychiatric Association’s annual meeting in San Francisco. Initially, the changes will be not only confusing but also costly for healthcare providers. However, time will eventually mitigate that situation. In contrast, older patients and the up-and-coming baby boomers may find the confusion more enduring and problematic, especially related to neurocognitive disorders.

What’s New?
The first and most obvious change in the newest version is that the Roman numeral V has been replaced with the Arabic numeral 5. The second noticeable change is that the dementia chapter in DSM-5 is titled “Neurocognitive Disorders,” whereas in DSM-IV it was titled “Delirium, Dementia, Amnestic, and Other Cognitive Disorders.” According to DSM-5, changes for delirium include the following:

1. disturbance in attention (ie, reduced ability to direct, focus, sustain, and shift attention) and orientation to the environment;

2. disturbance develops over a short period of time (usually hours to a few days) and represents an acute change from baseline that is not solely attributable to another neurocognitive disorder and tends to fluctuate in severity during the course of a day;

3. a change in an additional cognitive domain, such as memory deficit, disorientation, or language disturbance, or perceptual disturbance that is not better accounted for by a preexisting, established, or evolving other neurocognitive disorder; and

4. disturbances in No. 1 and 3 must not occur in the context of a severely reduced level of arousal, such as coma.

Another significant change is that the term “dementia” has been eliminated and replaced with major or minor neurocognitive disorder. It was believed that the word dementia was stigmatizing toward older individuals and not well accepted by younger individuals with HIV dementia. The new term focuses on the decline from a previous level of functioning as opposed to a deficit.

The old dementia terminology required the presence of memory impairment for all of the dementias. It has been recognized that memory impairment is not the first domain to be affected in all of the other diseases that cause a neurocognitive disorder. For instance, in frontal temporal disorder, language could be affected first. This change in terminology will require that all diagnosing healthcare professionals first establish the presence of a neurocognitive disorder and then determine whether the neurocognitive disorder is minor or major.

In DSM-5, a minor neurocognitive disorder is defined by the following:

• There is evidence of modest cognitive decline from a previous level of performance in one or more of the domains outlined above based on the concerns of the individual, a knowledgeable informant, or the clinician; and a decline in neurocognitive performance, typically involving test performance in the range of one and two standard deviations below appropriate norms (ie, between the third and 16th percentiles) on formal testing or equivalent clinical evaluation.

• The cognitive deficits are insufficient to interfere with independence (eg, instrumental activities of daily living, like more complex tasks such as paying bills or managing medications, are preserved), but greater effort, compensatory strategies, or accommodation may be required to maintain independence.

• The cognitive deficits do not occur exclusively in the context of a delirium.

• The cognitive deficits are not primarily attributable to another mental disorder (eg, major depressive disorder, schizophrenia).

In DSM-5, a major neurocognitive disorder is defined by the following:

• There is evidence of substantial cognitive decline from a previous level of performance in one or more of the domains outlined above based on the concerns of the individual, a knowledgeable informant, or the clinician; and a decline in neurocognitive performance, typically involving test performance in the range of two or more standard deviations below appropriate norms (ie, below the third percentile) on formal testing or equivalent clinical evaluation.

• The cognitive deficits are sufficient to interfere with independence (ie, requiring minimal assistance with instrumental activities of daily living).

• The cognitive deficits do not occur exclusively in the context of a delirium.

• The cognitive deficits are not primarily attributable to another mental disorder (eg, major depressive disorder, schizophrenia).

Note that in diagnosing a minor neurocognitive disorder, one and two standard deviations below appropriate norms is required. In diagnosing a major neurocognitive disorder, two or more standard deviations below appropriate norms are required. This need for cognitive testing will add to patient cost since neither the Mini Mental State Examination nor the Montreal Cognitive Assessment, the common screening tools utilized by many clinicians, yields results in standard deviations. In addition, the requirement that the cognitive deficits are insufficient to interfere with independence is subjective and will cause additional confusion for both clinicians and patients.

Having determined whether a patient has a major or minor neurocognitive disorder, the healthcare professional making the diagnosis must then decide on the etiological subtype of the major or minor neurocognitive disorder. The subtypes that have been listed are neurocognitive disorder due to Alzheimer’s disease; vascular neurocognitive disorder; frontotemporal neurocognitive disorder; neurocognitive disorder due to traumatic brain injury, Lewy body dementia, Parkinson’s disease, or HIV infection; substance-induced neurocognitive disorder; neurocognitive disorder due to Huntington’s disease, Prion disease, or to another medical condition; and neurocognitive disorder not elsewhere classified.

Consequently, healthcare staff will require training (at an additional cost yet to be determined) to sufficiently understand these etiological subtypes. Consider Lewy body dementia, for example, and the following information regarding a patient:

• The individual meets criteria for major or minor neurocognitive disorder and meets a combination of core diagnostic features and suggested diagnostic features of Lewy body dementia.

• The individual experiences insidious onset and gradual progression.

• The symptoms are not better attributed to cerebrovascular disease, as evident on focal neurologic signs or on brain imaging.

• The symptoms are not better attributed to another physical illness or brain disorder.

Providers must specify whether major or minor neurocognitive disorder is due to probable Lewy body dementia (requiring two core features or one suggestive feature with one or more core features) or possible Lewy body dementia (requiring one core feature or one or more suggestive features).

Core diagnostic features of Lewy body dementia include the following:

• fluctuating cognition with pronounced variations in attention and alertness;

• recurrent visual hallucinations that are typically well formed and detailed; and

• spontaneous features of Parkinsonism with onset at least one year later than the cognitive impairment.

Suggestive diagnostic features of Lewy body dementia include the following:

• rapid eye movement sleep behavior disorder;

• severe neuroleptic sensitivity; and

• low dopamine transporter uptake in basal ganglia demonstrated by SPECT or PET imaging.

Potential Fallout
Having identified some basic changes, it is important to consider some possible effects of DSM-5. Although it’s likely that DSM-5 will offer improvements in diagnostic criteria such as those listed above, not all healthcare professionals will agree. Since the strengths and weaknesses of DSM-5 go beyond the scope of this article, the debate will continue. Nonetheless, all healthcare professionals will be obliged to spend considerable time and effort transitioning to the new system. Their primary task will be learning the differences between major and minor neurocognitive disorders and explaining the differences and their significance to patients and their families.

In my experience, many older individuals are currently confused about dementia. They do not understand dementia and are often surprised that diseases such as Alzheimer’s cause dementia. Older individuals recognize that Alzheimer’s disease and dementia are both detrimental to quality and length of life. However, they fail to comprehend the relationship between the two. The addition of major and minor neurocognitive disorder due to Alzheimer’s disease, Lewy body dementia, HIV, etc will only add to the confusion.

The other concern is that when a patient is diagnosed with minor neurocognitive disorder due to Alzheimer’s disease, he or she may assume it is a minor situation akin to minor surgery or something trivial and nothing to worry about. He or she may not fully recognize the seriousness of the diagnosis in terms of disease progression. Subsequently, this lack of recognition can contribute to negative effects, namely whether the patient complies with treatment; takes the prescribed medications to slow progression; meets with an elder care attorney to construct a will, power of attorney, and advance directive; and seriously addresses issues such as driving and long term care.

Failing to adequately comprehend them will lead to misdiagnosing elderly patients who may not have a neurocognitive disorder but simply normal memory loss associated with aging which, while a source of concern, would not be clinically significant at the moment. The concern of many geriatrics experts is that the new DSM-5 criteria will lead to many false-positives. With the current version of DSM, older patients are frequently misdiagnosed and treated for either the wrong dementia or for no dementia.

Inherent Challenges
Many consider mild cognitive impairment (MCI) to be a transition from normal aging to Alzheimer’s disease. As a geriatric care manager who accompanies many clients to a memory clinic for evaluation and diagnosis of memory complaints, it will be a challenge to me to explain why MCI is not included in DSM-5. For baby boomers, who are and will continue to be more medically sophisticated than the current generation, it will be perplexing. For the numerous individuals who are currently diagnosed with an MCI disorder, it will be puzzling. To eliminate the confusion, many patients will need to be reeducated as to how their diagnosis was made and what it means to them. Yet again, this will require time (which, of course, is money) and additional expense for instructive materials.

Adding to the turmoil among the current cohort of elderly and the better-educated and well-read baby boomers are the new guidelines developed by the Alzheimer’s Association and the National Institute on Aging. They consist of the preclinical stage (currently used only in research) that relies on biomarkers and MCI or dementia due to Alzheimer’s disease. While available space limits the discussion of specifics, suffice it to say that this will only add to the confusion of clinical staff and patients.

The new published stages utilize the term dementia that does not exist in DSM-5. If the clinician uses the criteria developed by the Alzheimer’s Association and the National Institute on Aging, he will diagnosis dementia due to Alzheimer’s disease. If the clinician uses DSM-5, he will diagnose major or minor neurocognitive disorder due to Alzheimer’s disease. Similarly, MCI will be diagnosed as MCI or mild neurocognitive disorder due to Alzheimer’s disease. The end result will be confusion for the clinician, the patient, and perhaps even administration/billing.

As our knowledge and understanding of neurocognitive disorders and dementia grows, change is inevitable. After DSM-5 is released, updates will eventually be published that ideally will eliminate the confusion.

As noted, the current cohort of elderly who are experiencing these diseases and the baby boomers who are aging and will struggle with these diseases will indeed experience confusion. The Alzheimer’s Association, the National Institute on Aging, and DSM-5 have all made necessary improvements in the diagnosis of these diseases. It is crucial that professionals in the field of aging are prepared to sufficiently explain the concepts to the population in general who, with the correct guidance, will continue to age well. 

— James Siberski, MS, CMC, is the coordinator of the Gerontology Education Center for Professional Development as well as an assistant professor of gerontology at Misericordia University in Dallas, Pennsylvania, and an adjunct professor of psychiatry at Penn State University.