The Diagnostic and Statistical Manual of Mental Disorders, published and periodically updated by the American Psychiatric Association, is one of those documents few laypeople ever read, but many of us are affected by.
It can make it easier or harder to get an insurance company or Medicare to cover treatments, for example. It factors into a variety of legal and governmental decisions.
And on a personal basis, a psychiatric diagnosis may be welcome (having a name and a treatment plan for what’s bothering us can be comforting) or not (are we really suffering from a mental disorder if we seem depressed after a family member dies?).
That last question refers to a change in the new DSM5, to be published in May, that has generated considerable controversy and that I discussed in an earlier post: the removal of the “bereavement exclusion,” once part of the diagnosis of major depressive disorder.
Another element of the revised D.S.M. could also affect readers: It will include something called mild neurocognitive disorder. The task force revising the manual wanted to align psychiatry with the rest of medicine, which has already begun to distinguish between levels of impairment, said its chairman, Dr. David J. Kupfer, a University of Pittsburgh psychiatrist.
True enough, as we have reported before. Neurologists call it mild cognitive impairment, a stage where cognitive decline becomes noticeable enough to affect daily functioning, yet people can still live independently and have not progressed to dementia.
In fact, a large proportion of people with mild cognitive problems never will develop dementia — but doctors and researchers cannot yet determine who will and who won’t. Biomarkers that could identify the biological brain changes that presage dementia are still years away.
Will it be helpful, then, for health professionals using the DSM5 — most of them not psychiatrists, but primary care doctors — to begin diagnosing mild neurocognitive disorder? Particularly as there is no treatment that can reverse it or reliably slow its progression, if it would progress?
Dr. Ronald Petersen, director of the Mayo Clinic’s Alzheimer’s Disease Research Center and a member of the working group that developed the new DSM5 criteria, said he thought the newly recognized disorder would be useful. “The predementia phase is becoming increasingly important,” he told me in an interview.
Counseling could help people compensate for the memory loss and other deficits they are experiencing, for example. With a D.S.M.-recognized diagnosis, those approaches are more likely to be covered by insurers.
Besides, “one argument against Alzheimer’s therapies is that we wait too late, when there’s too much damage to the central nervous system to repair,” Dr. Petersen said, referring to several recent disappointing drug trials. In the future, with earlier diagnoses, “you may be able to intervene, stop the process and forestall the dementia.”
But as we have seen with screening tests for other diseases, early detection does not always lead to better health or longer lives. It can, however, lead to unnecessary treatments and procedures involving risks of their own. Could that happen with mild neurocognitive disorder?
“It will lead to wild overdiagnosis,” predicted Allen Frances, an emeritus professor of psychiatry at Duke and the chairman of the task force that developed the previous D.S.M. edition. Indeed, about a quarter of people initially diagnosed with mild cognitive impairment are later determined to be normal, a prominent researcher told my colleague Judith Graham last year.
“People will get unnecessary tests and start getting weird treatments that have no proven efficacy,” said Dr. Frances, who has criticized a number of DSM5 changes. “They’re going to worry like crazy about being demented.”
Dr. Petersen agreed that it was a legitimate concern, but “by and large, we’re becoming better at distinguishing between the normal cognitive effects of aging and disease.” (The American Psychiatric Association will publish a specialized D.S.M. for primary care physicians, Dr. Kupfer pointed out, to help guide them through diagnoses.)
It is hard for patients and families to know how to react when experts disagree. But keep in mind that contemporary health care aims for what is called shared decision-making. That means patients and professionals discuss options and weigh the risks and benefits of treatments and procedures, their likely outcomes, patients’ preferences, and come to agreement on how to proceed. This essay in the New England Journal of Medicine calls shared decision-making “the pinnacle of patient-centered care.”
So when Dr. Frances refers to the DSM5 as “a guide, not a bible,” and urges skepticism about some of its diagnoses, he is advocating an approach that patients and families should probably bring to any medical decision.
Seeking further information, asking questions, assessing options — those are reasonable responses if, a few weeks after a loved one’s death, a doctor says you may have major depression. Or if she thinks your memory loss could mean mild neurocognitive disorder.
“The shorter the evaluation, the less the person knows you, the less he or she can explain and justify the diagnosis, the more tests and treatments that will result, the more a person should be cautious and get a second opinion,” Dr. Frances said.
Whatever the DSM5 says, it’s hard to argue with that.
Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”
