[SEO term: Alzheimer's disease]

Family Members Volunteer for Research to Prevent Alzheimer's Disease

The words "hope" and "Alzheimer's disease" usually don’t go hand in hand. Thus far, no treatment exists to cure Alzheimer's disease or prevent it from robbing the estimated 3.8 million peoplewho have it of their memories and personalities.[KC1]

But hope is what drives retired teacher Audrey Dempsey, 76, to volunteer as a research subject in a long-term study at Mass General’s Massachusetts Alzheimer’s Disease Research Center. “I’m hoping they'll learn to find it early, and then do something about it,”says the grandmother from Upton, whose own mother spent seven years in an Alzheimer’s facility before she died in 2000.

Hope also motivates retired Boston Globe executive, Steve Taylor, 62, of South Dartmouth, to participate in the study.He recalls the painful process of watching his father, a long-time provost at Yale University, decline into dementia with Alzheimer’s disease before his death in 2013. Mr. Taylor, the father of two grown children,describes himself as "cautiously optimistic and very hopeful." He says, "It's critically important to society that this problem gets tackled successfully."

Mrs. Dempsey and Mr. Taylor, who do not have Alzheimer’s disease, are among 800 volunteers who have agreed to be examined, tested, interviewed, stuck with needles and scanned once a year and sometimes more often, in the hope that researchers will find early markers of the disease long before symptoms show up,so that drugs can then be used to help prevent it.

Detecting Signs of Alzheimer's Disease Early with Prevention in Mind

That goal is now tantalizingly close after decades of disappointment in trying to treat advanced Alzheimer’s disease, says Director of the Massachusetts Alzheimer’s Disease Research Center at Mass General, Bradley Hyman, MD, PhD.

"The idea behind of all of this is pretty simple,” says Dr. Hyman, “Trying to fix the problem after the brain has already been severely affected is tougher than treating it earlier when there are biochemical changes but there are no symptoms yet.But In order to do that, we have to be able to accurately predict the natural history of the disorder.”

That means turning over every possible stone in the search for clues called "biomarkers" thatcan alert doctors long before symptoms show up. And that's where Mrs. Dempsey, Mr. Taylor and the other long-term volunteers come in. Their participation offers researchers a chance to observe, over time, people who have a high risk for developing the disease because their family members have had it. The group is made of up one third of people who are considered to be normal, one third who have very early memory impairment and one third who already have dementia.

Progress on Several Fronts

This strategy is already producing some results. Researchers have identified several biomarkers and are working on more. PET scans, for example, can detectthe early appearance of amyloid, a protein that is a hallmark of Alzheimer’s disease in the brain. "The idea is you shouldn't have any amyloid in your brain. Less is better," Hyman explains.

Similarly, samples of cerebrospinal fluid can reveal levels of amyloid and a related protein called tau that indicates the presence of early brain deterioration. And a new form of MRI imaging, called "Connectome,"is under development at the Mass General Martinos Center for Biomedical Imaging."It's a very fancy MRI scan that gives you a look at the connections in the brain. The images are spectacular. Used over time, theConnectome scans can show,in vivid color, [PHS IS2]whether neuron pathways in the brain are gradually disappearing—a sign of brain deterioration that appears well before a person’s memory is affected. "There are only two places in the world that have the equipment to do this and we’re one of them," says Hyman,

At the same time that researchers are finding biomarkers for early detection, new drugs are under development to help prevent Alzheimer's disease in people who have these early signs. For example, Director of the Center for Alzheimer's Research and Treatment at Mass General and Brigham and Women's Hospitals, Reisa Sperling, MD, MMSc, and her colleagues have received a grant from the National Institutes of Health to test an anti-amyloid drug in people who do not have symptoms of Alzheimer's but who do have amyloid plaques in their brains. Other trials of related drugs are also in the pipeline.

Mr. Taylor, who has Alzheimer's disease on both sides of his family, hopes that participating in the long-term study might help him and his family members avoid the kind of deterioration he witnessed as his father’s disease progressed. "I think everyone who has been in the position of having a parent with Alzheimer’s…knows, it’s not pretty and it’s not happy," he explains, "I would say this is a very worthwhile study. I'm learning a lot and Mass General makesme feel I am contributing."

For Mrs. Dempsey, who likes to practice her recall skills before coming in for memory testing at Mass General says,"It's absolutely critical to participate if you have a family history. I think it is so critical that people give to Alzheimer's research any way they can."

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[KC1]NEJM 4/4/2013

[PHS IS2]I can ask for these images if you want.