Photo: George Anderson's self-portrait before Parkinson's-related dementia struck. (Provided courtesy of LaVerne Anderson)
Living halfway around the world, LaVerne Anderson has spent hundreds of hours on the phone and Internet during the past decade, carefully monitoring the care of her parents and a stepfather as old age slowly stole their health. Frequent, costly trips between England and her childhood home in rural California burned through her modest savings, but gave her a chance to confer with doctors and check in on the aging family members for herself.
Along the way, the growing list of physical ills were all-too obvious to Anderson, her brother, friends and professionals. But after years of consultations with doctors and other health care workers, one nagging question was much harder to answer: Were they mentally ill?
Psychiatrists Debating New Diagnoses
Even among psychiatrists that question often triggers debate when the patient is a senior. Everyone agrees that age affects the brain, raising the risk of dementia and other mental disorders. But at what point does normal aging end and mental illness begin? For that, professionals consult the Bible of psychiatry, the Diagnostic and Statistical Manual of Mental Disorders, which defines nearly 300 mental conditions.
Now, the Bible is about to change. For the first time in two decades, the DSM, as the manual is known for short, is being revised to include new definitions of mental disorders. As a result, millions of elders who've been considered "normal" until now could be classified as mentally ill, resulting in new therapies, treatments with psychotropic drugs and substantial new financial costs to society.
The next edition of the psychiatric manual, now in scientific review will be only the fifth -- DSM-5. The number of disorders already listed has tripled since the original version was published in 1952. A few have been dropped over that time, sometimes amid controversy. Homosexuality, for example, wasn't removed as a mental disorder until the 1987 revision.
DSM-5, due out in March 2013, will affect people at all age levels, but it will have an especially profound effect on the 40 million Americans over 65 and on the 77 million boomers, who are just now edging into retirement. The impact will also put more pressure on younger members of society, who will foot the quickly rising bill for their care.
The costs of treatment for patients diagnosed with current mental disorders is already staggering. One in five people over 55 suffer from a mental disorder, and two-thirds of nursing home residents exhibit mental and behavioral problems, according to the American Psychological Association.
The Cost of Grief
Just to treat the 5.4 million Americans with Alzheimer's -- a fatal disease that is the leading form of dementia -- cost $183 billion in 2011, and that figure excludes $202 billion in unpaid care by family and friends, according to Alzheimer's Association. The association estimates treatment costs will soar to $1.1 trillion by 2050, when 16 million Americans may be dying from the disease. To put that cost in perspective, the entire 2012 United States budget is about $3.8 trillion, including a $1.3 trillion deficit.
New definitions of mental illness contained in DSM-5 could add significantly to the costs of caring for elders. For example, most seniors grieve as they lose parents, spouses, siblings and life-long friends. That has always been considered a normal life stage. For the first time, though, DSM may categorize grief as a new psychological syndrome under a proposal to include severe bereavement.
While that may seem like a technical change, it can have deep and unintended effects as grief-stricken elders are suddenly reclassified as mentally ill. They may be treated with psychiatric drugs. They may have trouble getting insurance. They may be forced into different housing options, at higher costs.
And then there is the persistent social stigma of being diagnosed as mentally ill. The change could also lower the threshold for the mental illness to the point where it creates false-positives in diagnosis, exposing elders to mind-altering treatments they don't need.
The DSM-5 task force also wanted to eliminate the term "dementia" as too pejorative while leaving the definition intact. They proposed calling it "major neurocognitive disorder." That brought criticism from both sides, according to Dilip Jeste, president-elect of the American Psychiatric Association and chief of geriatric psychiatry at the University of California, San Diego. The task force compromised and amended the name to "major neurocognitive disorder (dementia)."
A New Disorder
A separate change that may affect millions of seniors would be to add "mild neurocognitive disorder," as a potential precursor to dementia. This would be a brand new classification, potentially affecting millions of older Americans.
"There is often a stage before the onset of dementia when people have some cognitive impairment that is more than you would expect for their age, but does not meet the definition of dementia," said Jeste. "It is typically called mild-cognitive impairment. We thought it was important to have that separate category included. That is new."
However, some doctors worried that people diagnosed with mild-cognitive disorder would be burdened with a psychiatric label and find it hard to get a job or life insurance.
But Jeste said some Alzheimer's researchers wanted to call it early Alzheimer's because they'd like to detect that disorder as early as possible. "We didn't agree with that," he noted. "We're not sure such a person would develop Alzheimer's. The term mild neurocognitive disorder will get people the services they need but not give them the label of Alzheimer's."
All together, the proposed DSM-5 changes have spawned a variety of criticisms among professionals in the field during the last three years of the review process, eventually forcing a one-year delay in adopting any changes.
Among the critics was David Elkins, president of the Society for Humanistic Psychology, a division of the American Psychological Association. He formed a committee that presented a petition in October that expressed "substantial reservations about a number of the proposed changes."
The grassroots movement immediately drew support from a number of professional psychology organizations. "We are concerned about the lowering of diagnostic thresholds for multiple disorder categories, about the introduction of disorders that may lead to inappropriate medical treatment of vulnerable populations, and about specific proposals that appear to lack empirical grounding," the petition reads.
Among the changes the petition singles out is the plan to allow bereavement to be considered a major depressive disorder. In DSM-4, grief is currently excluded as a criteria for major depression. That exclusion "prevents the pathologization of grief, a normal life process," the petition states.
Some experts worry that the addition of a bereavement disorder will open the doors to drug makers for a whole new market in prescription drugs.
Jeste responds that "DSM is only a diagnostic manual, it is not a treatment manual. It is important to keep in mind that just because someone is diagnosed with depression doesn't mean they need antidepressants." He points out the current DSM was developed largely based on the science in 1980 and needs updating.
For him a big downside of getting old is the poor care of those with mental disorders. "One of the most disenfranchised groups in society are older people with mental illness," he said. There is a major problem in health care access and delivery programs.
Jeste finds a more critical challenge facing society is to train more geriatric health care workers. There are only about 2,000 board-certified geriatric psychiatrists in the United States, he said. "Most physicians don't get adequate training in aging."
That, along with the shifting definitions of mental illness in elders, may help explain why LaVerne Anderson has never gotten a clear answer to her question of whether or nother parents mentally ill.
Pamela A. MacLean, editor of RedwoodAge.com, wrote this article for as part of the MetLife Foundation Journalists in Aging Fellowship, a project of New America Media and the Gerontological Society of America. It is Part 1 of a series on mental health challenges for older Americans.
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