Research advances bittersweet for Alzheimer's patients

These days, he doesn't always remember who she is.

Four years after John Shreve's diagnosis with Alzheimer's disease and seven years after his wife, Janice, began realizing he was having memory problems, he sometimes looks at her blankly, trying to place her.

“You're not supposed to challenge people with Alzheimer's or question them, but I find that hard,” said Janice Shreve, 73, who lives with her husband of 42 years in Roseville, Calif.

“I'll sometimes ask if he knows me. And he says, ‘Of course, I know who you are. You're my precious thing.'”

Promising new developments in the field of Alzheimer's research hold great potential for people not yet facing the disease. But for the families of those already suffering, the news is bittersweet, hinting of solutions to come rather than answers now.

In the heart-wrenching world of Alzheimer's, landmark new guidelines for diagnosing the disease — which affects 5.4 million people today and is expected to soar to epidemic proportions with the aging of the baby boomers — have immediate application not to patients, caregivers and families, but to the scientific community.

Studies on the biology of Alzheimer's recently linked the disease with five specific genes whose presence increases the risk of developing it. So far, the research gives tantalizing clues about who gets Alzheimer's and how it progresses — but no clear path to a cure.

Still, the guidelines recently released by the National Institute on Aging and the Alzheimer's Association are bringing researchers and clinicians new hope.

The new criteria, the first since 1984, raise the possibility of advances that will lead to a changed Alzheimer's landscape in the future, one in which pre-symptomatic treatment may prevent damage before it occurs, just as the treatment of high cholesterol can prevent heart disease from developing.

“It will change the way we look at Alzheimer's,” said Elizabeth Edgerly, Alzheimer's Association of Northern California program officer. “In the future, there will be people with Alzheimer's with no symptoms. They'll have the biological markers for the disease, but no memory problems. That's what the field is shifting toward.”

But not yet, doctors caution.

The new guidelines divide the progression of Alzheimer's into three stages: preclinical, with measurable changes in brain imaging and spinal fluid yet no outward signs of the disease; mild cognitive impairment, in which memory loss is slight and doesn't compromise daily life; and full-fledged dementia.

While the first stage holds great promise for the development of treatment, experts warn that it's only a research category at this point.

“This is not a green light for everybody to run out and get brain imaging,” said Dr. Charles DeCarli, neurologist and director of the Alzheimer's Disease Center at the University of California, Davis.

For example, says DeCarli, some people have the pathology of Alzheimer's but never develop symptoms — and some people develop memory loss and eventual dementia even though they never have Alzheimer's. In other words, Alzheimer's is a path to dementia, but not always and not the only one.

Dementia can result from a number of conditions, including strokes and severe vitamin B deficiency. And according to the Alzheimer's Association, half the people with dementia never receive any diagnosis at all.

Some dementias — those caused by head injury and, many times, brain tumors — are treatable. But dementia from a large category of diseases mainly affecting the elderly, including Alzheimer's and Parkinson's, cannot be cured.

Experts have long known that Alzheimer's can cause changes in the aging brain as much as a decade before symptoms such as memory loss appear.

And patients and their families have understood that early detection is crucial.

Yet early diagnosis has lagged. Family physicians can be too likely to assume that forgetfulness is a normal part of aging. So can family members.

“The whole purpose of revising the guidelines is to more accurately diagnose Alzheimer's disease and differentiate it from other types of dementia — and to identify it earlier so we can intervene earlier,” said Dr. Shawn Kile, a neurologist with the Sutter Neuroscience Institute in Sacramento, Calif.

John Shreve, now 90, didn't even think about asking doctors if he might have Alzheimer's until he had a serious memory lapse.

“We started asking for a diagnosis, but I think his doctors thought, ‘He's aging, so we don't get excited about this,'” said his wife, Janice.

And so three years passed, marked by uncertainty and worsening symptoms.

“They finally said they'd refer him to the UC Davis Alzheimer's Disease Center,” she said. “My gosh, why did it take so long?”

It matters, she says. For one thing, she would have joined an Alzheimer's support group much sooner, finding strength and comfort and good advice from other people dealing with spouses suffering from the disease.

Mynga Futrell, 66, of Sacramento, took care of her elderly mother during her steep decline from Alzheimer's disease in the 1990s. In her mother, Futrell has seen what her husband's future might hold.

Because now her husband, 79-year-old retired professor Paul Geisert, has mild cognitive impairment, which may or may not lead to full-fledged Alzheimer's.

While the new Alzheimer's guidelines also help define mild cognitive impairment, doctors say the disorder progresses to Alzheimer's disease only about half of the time.

Living with that uncertainty takes a toll.

“It's very scary,” said Futrell. “I'm going to try to take the future one day at a time. But I think at some point, I won't be able to maintain.”

Inevitably, hope will come too late for some people.

John Shreve can't stay by himself anymore. His wife hires a caregiver one afternoon a week, plus he spends a day in an adult day health program.

“When we got married, he mentioned the difference in our ages and who was to know what would happen in our older years,” Janice Shreve said. “I'm very blessed to have such a wonderful husband. I'm thankful for all the good years. I don't think I made a mistake, but I didn't know what was in store.”

<b>Stages of Alzheimer's disease</b>

Until recently, most tests for Alzheimer's have focused on memory loss, behavioral changes and other problems that experts now think emerge 10 years or more after the disease process actually begins in the brain.

The new Alzheimer's Association criteria divide the disease into three distinct stages:

<b>Preclinical Alzheimer's disease: </b>Although no signs are yet noticeable, scientists are researching measurable changes to the brain that happen in the years before symptoms appear.

In particular, researchers are testing whether certain protein biomarkers — naturally occurring substances whose presence may indicate a disposition for developing a disease — may decrease in the spinal fluid as Alzheimer's progresses.

<b>Mild cognitive impairment because of Alzheimer's: </b>Slight changes in thinking and memory that don't yet compromise someone's ability to remain independent. The new criteria help differentiate Alzheimer's-related MCI from impairment caused by other problems.

<b>Dementia resulting from Alzheimer's: </b>Full-blown thinking, memory and behavioral problems that compromise daily function and can lead to death.

Already, doctors know that good general-health principles for aging — moderate exercise and diet, avoiding obesity, remaining socially connected — can help stave off the development of dementia from all causes, including Alzheimer's.