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Therapy? For now, we make the best of what we've got.
For a week, a frail woman in her 80s has waited just inside her room, ready to sock anyone coming through the door.
A 72-year-old man wakes up at night and, seeing a stranger in his bed (it’s his wife), he flees the house, clutching a blanket.
“We used to think some people with dementia might be spared psychotic or mood symptoms,” says psychiatrist Constantine Lyketsos, “but now we know that’s not the case.”
Lyketsos has made a career point of investigating the hallucinations, agitation, depression, apathy, sleeping and eating disorders—the especially difficult face of Alzheimer’s and other dementias—that arise in the course of disease. For some 14 years, he’s headed Hopkins’ arm of the seminal Cache County study that monitors an apparently healthy subgroup of Utah residents who slip into dementia and decline. And as director of the new Johns Hopkins’ Memory and Alzheimer’s Treatment Center (column, right), Lyketsos is quick to apply what’s found, as are his colleagues.
The last few years, however, have brought discouraging news for these patients. Recent Cache County work showed that most of the just-diagnosed get neuropsychiatric symptoms—delusions and depression, especially—in as little as 18 months and, worse, that all have them within five years. Added to that are recent FDA warnings for some antipsychotic drugs often used for the problems.
Given the aging population and the huge damage these symptoms wreak, “studies that better the ways we use existing therapies for neuropsychiatric symptoms or that search for new ones are crucial,” Lyketsos says.
If, for example, psychosis or agitation pulls at life’s seams, the Hopkins clinicians have had to weigh risk against benefit more rigorously for traditional antipsychotics. With them, the mortality risk is real. At the same time, national studies Lyketsos co-authored justify their use, especially for persistent agitation that plagues patients and tries caregivers. “So we use a much higher standard for the drugs,” says Lyketsos, “and pick our patients very carefully.”
Because earlier research alerted the clinicians to antipsychotics’ drawbacks for AD patients, they’re now testing alternatives. Hopkins trials proved antidepressants’ worth for Alzheimer’s patients with major depression. “We’re hoping they could also step in for antipsychotics to treat agitation,” Lyketsos adds. A new $7.8 million NIH grant to try the safer antidepressant citalopram could tell if that’s a solution.
At the same time, there’s renewed emphasis on good practice—routinely ruling out urinary tract infections, for example, that can spark swift changes in behavior, or considering environment. One such example: An observant nurse discovered that a patient who punched visitors had accidentally bumped her thermostat to an uncomfortable high.
Also, there’s no substitute for training caregivers or having a 24-hour help pipeline in place, Lyketsos says. He recalls phoning a woman whose now-agitated husband had loved Greek dancing. A little bouzouki music at sundown, Lyketsos suggested, might work wonders. The husband grew calmer at nighttime awakenings.
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Synergy At Last
Hopkins’ Memory and Alzheimer’s Treatment Center is new, just opened last fall, and it’s something of a phoenix—having risen, not out of ashes, but from a welter of clinics, patient units and research projects across three departments and as many campuses. “We kept bumping into each other while Alzheimer’s explodes as a public health problem,” says Constantine Lyketsos, director of the center. Yet with ample clinic space now available on Hopkins’ Bayview campus and funding freed up, the value of sharing what’s best became amazingly obvious.
While the center still spans Hopkins Hospital, Bayview Medical Center and The Copper Ridge Institute in Sykesville, it now pools expertise. Diagnosis, therapy, dementia care—as outpatient, intermediate or long-term—and experience in educating caregivers continue but without duplication.
Benefits to research are clear. “If you see enough patients under clinical care—our objective for next year is 1,000—a substantial number enter studies, raising our ability to find cures,” Lyketsos explains. But the new center isn’t research-driven, he points out. “We offer a continuum of care from diagnosis to death whether or not patients are in a research protocol. We’re likely unique in the extent of that. Our studies are grounded, however, in that top-shelf clinical care.”
What Lyketsos calls “little pieces of added value” are typical:
• When an Alzheimer’s diagnosis is especially difficult, center clinicians apply advanced imaging techniques originally developed for research. Working with radiologists, they’ve developed a dementia-specific protocol for the 3 Tesla MRI scanner. The scanner’s high magnetic field strong-arms needed resolution into images—enough, for example, to detect microbleeds that underlie some dementia. Combining this with more traditional PET scans brings a new capability to expose brain damage. Combined MRI and PET make diagnosis more trustworthy.
• With Alzheimer’s being a most demanding disease, ongoing care is hard to do well. Years of research and patient contact has let center staff develop the Johns Hopkins Dementia Care Needs Assessment, an 86-item checklist and explanatory manual: Is it time to stop driving? Are you on too many medications? Are guns in the house? The approach keeps patients and caregivers from falling through the cracks.