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The false promise of dementia drugs

Federal officials are working to place compassion at the center of how our nation aims to treat elderly patients suffering from dementia.

The Centers for Medicare and Medicaid Services (CMS) has announced that they'll coordinate an effort to dramatically reduce the use of antipsychotic drugs among dementia patients in nursing homes. The agency's plan acknowledges that these powerful pharmaceuticals are often overused — and represents a valuable first step toward improving the way we treat people with this condition.

But government alone shouldn't dictate how we deal with dementia. Families and caregivers must also recognize when medication is appropriate — and when it's not.

More than 5 million Americans are afflicted with Alzheimer's and related dementias. Coping with a loved one suffering from the disease is an immensely trying experience — one that can leave even the most stoic among us desperate to try anything to alleviate a family member's suffering.

It's no surprise, then, that nearly 40 percent of dementia patients living in nursing homes receive antipsychotic drugs. Overall, some 14 percent of nursing home patients are on antipsychotics. These are alarmingly high numbers, given how ineffective — or even dangerous — the drugs can be.

For starters, antipsychotics have not been approved by the federal Food and Drug Administration to treat dementia. No drugs have. Only about 20 to 30 percent of elderly dementia patients who take an antipsychotic drug show even marginal improvement.

For such unimpressive results, the potential harms are significant. For every 53 patients treated with such a pharmaceutical, one will die. And for every nine to 25 patients that benefit from an antipsychotic, one will die.

As a result, the FDA has issued a rare "Black Box Warning" stating that patients administered the drugs face a risk of death 1.6 to 1.7 times greater than those who take a placebo.

And yet, a blind faith in the effectiveness of antipsychotics that's not borne out by the science remains. Abandoning this belief is a necessary first step toward improving the way we treat dementia — and saving lives.

To do so, we must first change the way we think about the illness.

Many view dementia as the cause of a number of behaviors that need to be corrected or controlled. This misconception fits our cultural penchant for pills quite nicely. For instance, Grandpa George's loud incoherence or Aunt Esther's refusal to calm down are symptoms that need to be alleviated through medicine — or so the thinking goes.

But folks displaying the disruptive behaviors associated with dementia are more often trying to communicate with those around them. Their "acting out" signifies their frustration at their inability to do so.

Consequently, people interacting with them — whether family members or professional caretakers — ought to try first to understand what the patient is trying to convey. Then, they can take appropriate action.

For instance, yelling, wandering or resisting care are not symptoms of psychosis and will not be resolved through the use of antipsychotics or other medications.

But if a drug is judged necessary, keeping close tabs on it is imperative. A checklist can be helpful. Is the person showing signs of improvement? Are they better able to engage with others and with their surroundings? Can that individual get by on a lower dose? Is the medication even working at all?

All too often, families and caregivers fail to ask these questions. That's a mistake. Given the risks associated with antipsychotics, determining how to address dementia-fueled behaviors without drugs is vital.

Fortunately, there's a growing body of evidence that supports the effectiveness of behavioral modifications and non-pharmacological interventions to treat dementia.

This new approach isn't just something for nursing home staffers or professional caregivers to consider — it's important for us all. Odds are that we all know someone who suffers from the condition — or someday will. Decisions about their potential paths of treatment may fall to us.

CMS is right to try to reduce the use of dangerous antipsychotics in dementia patients. But it will not succeed without a shift in the way we all think about this debilitating condition.

Dr. Cheryl Phillips is a geriatrician and senior vice president of LeadingAge (www.leadingage.org), a national advocacy group focused on aging policy.

Copyright © 2015, The Baltimore Sun
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