A slower road through dementia

Date: January 2, 2012

“Alzheimer’s studies in the 1980s suggested a much faster disease for everybody,” says Kostas Lyketsos. “Now we know that’s not true.”

Paging through test results of people with Alzheimer’s disease—those in long-running studies out West that he’s helped direct for years—often puzzled Kostas Lyketsos.

 What his discerning eyes and ears told him—he heads Hopkins’ Memory and Alzheimer’s Treatment Center—was that, yes, the men and women were growing worse, but not at the pace that earlier studies worldwide predicted. 

So Lyketsos was eager for the bottom line on a recent study-within-a-study that he and colleagues ran to quantify the disease’s progress in 328 elders in Cache County, Utah, with possible/probable Alzheimer’s. For roughly four years, beginning with dementia’s onset, participants were rated on cognition and ability to function. Researchers also checked common neuropsychiatric symptoms like depression, apathy and agitation using a classic inventory.

Results showed that dementia progresses slowly in a surprisingly significant number of patients—more than a quarter of them. “In that group,” Lyketsos says, “thinking ability and life skills change very little for some three or four years after dementia begins.”

And the faster course others describe? That reflects a skewed sample, he explains, “a classic selection bias” in measuring patients who refer themselves to clinics, rather than those in the general population. Clinic patients tend to be younger and more likely to have a spouse who encourages them to seek help earlier for their more aggressive disease.

“There haven’t been many population-based studies,” says Lyketsos, “and they’re important for us to get the complete picture.” 

 When it began more than a decade ago, the “granddaddy” project—the Cache County Study on Memory in Aging that’s long involved Hopkins researchers—enrolled some 5,000 county residents, most of them seniors. The Utah site was singled out nationally because of uniformity: Folks there have fewer chronic illnesses and most of the population lives at home. Also, life expectancy is longer.

This newest study could yield solid benefits in expanding the drug pipeline. Previous trials of potential Alzheimer’s medicines, for example, measured benefits using a clinic-based yardstick. Yet, Lyketsos says, “it’s possible some drugs given a thumbs-down in clinic-based studies would actually help many patients with less aggressive disease.

“Also, we need to ask what’s special about these slow progressors. Could they tell us how to slow the disease significantly for everybody?”

Another find surfaced from the new study—this one from focusing on the neuropsychiatric symptoms. “Over time, every patient gets them,” Lyketsos says, “but looking at any one person’s course, we see that, unlike cognitive symptoms, these typically fluctuate a lot.” A patient’s aggression, for example, can ebb and flow.

“If these symptoms, the most disabling, can improve on their own, even temporarily,” he asks, “we could hope there’s some way to keep them from returning.”

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