Warwick conference explores latest in research, treatment of Alzheimer’s

Providence Journal (RI)

April 26-- Apr. 26--WARWICK -- Her husband's symptoms began to surface a few years ago, Peggy Marcotte told The Journal. For example, she would get in the car with Mike, a retired engineer who is now 71, and say: "We're going to Target," a familiar destination.

To which Mike would respond: "Where's that?"

"He couldn't solve problems he used to be able to solve, or organize his ideas, or complete a sentence," said Amanda Marcotte, one of Mike and Peggy's two children.

When it was clear Mike was experiencing some form of dementia and not the ordinary occasional memory lapses associated with normal aging, Peggy brought him to his primary-care physician. Tests were run and diagnoses made, including Lyme disease and Alzheimer's.

Eventually, the Marcottes found their way to Butler Hospital's Memory and Aging Program, where director Dr. Stephen P. Salloway ordered a PET scan of Mike's brain to see if it contained amyloid or tau plaque buildup, telltale signs of Alzheimer's.

It did not, Peggy said.

Instead, Mike was diagnosed with Lewy body dementia, "the second most common type of progressive dementia after Alzheimer's disease dementia," according to the Mayo Clinic.

The disease causes a "progressive decline in mental abilities," according to Mayo; to date, there is no cure or preventive intervention. Eventually, care can become emotionally and financially burdensome for the caregiver, sometimes forcing the difficult decision to place a loved one in a nursing home or similar facility.

So far, Mike's disease has not progressed that far.

"I feel like we've been lucky," Peggy said. "A lot of the symptoms he does not have yet. But can I say it's one-day-at-a-time knowing that someday I'm going to have to do more?"

"Time flies," Mike said.

And so, while "it's too late" for medicine to cure her husband, Peggy said, "for future generations -- for Amanda and her children -- we need more research."

The Marcottes told their story to The Journal on Thursday during the ninth annual "Caregivers Journey" conference, presented by the Rhode Island chapter of the Alzheimer's Association, which attracted hundreds of attendees and dozens of organizations in the dementia field to the Crowne Plaza.

The conference featured speakers and sessions exploring such topics as "The importance of early detection and taking control of your care planning," "Be an empowered caregiver," "Dementia 101" and "The grief journey of dementia caregivers." Research sessions saw updates from members of Rhode Island's robust science and care community.

The research sessions were led by Boston University School of Public Health epidemiologist Jennifer Weuve, whose work has led her to the conclusion that "burgeoning evidence suggests that exposure to air pollution may result in increased risk of Alzheimer's disease and related dementias," as her keynote address was described in the conference program.

Dr. Brian R. Ott, a leading clinician and researcher at Rhode Island Hospital, spoke about "Transcranial magnetic stimulation in Alzheimer's disease and related disorders," a promising non-invasive therapy that has been approved by the Food and Drug Administration for depression.

Salloway spoke, as did other members of his Memory and Aging Program team. Salloway's topic was "Tau PET: An emerging diagnostic, prognostic and outcome measure in Alzheimer's' clinical care and research." PET imaging is emerging as a powerful new tool in the fight against Alzheimer's, an invariably fatal disease that afflicts millions and costs billions in treatment and care.

The Butler team also offered DNA-collecting cheek swabs for individuals interested in joining a prevention registry and possibly participating in clinical studies.

Tom DePetrillo's wife, Carol Keefe, lives with Alzheimer's. She was unable to attend Thursday's conference, but her husband, an investment banker, did.

Carol, 74, a former prosecutor with the state attorney general's office, began to show symptoms five years ago, DePetrillo said. A definitive diagnosis was made.

"But chances are she probably had it a lot longer than that," DePetrillo said. Research has shown that the changes in the brain associated with Alzheimer's can begin years or even decades before the disease manifests itself with cognitive loss.

With his wife, DePetrillo said, "the progress has been pretty slow, luckily."

The couple can still travel and get out, splitting time between residences in Wickford and Newport. Her medical care is managed by Ott, and the couple have expressed their gratitude with a gift to Rhode Island Hospital to renovate treatment rooms.

But Carol is experiencing increasing short-term memory loss and requires increasing care. For his own well-being, DePetrillo said he needs time away -- a trip to the casino, for example, or to an Alzheimer's conference.

"It's important to have your time," he told The Journal. "It becomes a little overwhelming if you're hitting it 24 hours a day, seven days a week."

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