David Wasser oversees health and medical programming at RLTV. In this blog he provides background on the people and topics from To Not Fade Away:
Famous in her own right as a journalist and California’s former first lady, Maria Shriver has been a public advocate in the fight against Alzheimer’s ever since her dad, Sargent Shriver, was diagnosed. Sargent Shriver was a prolific American statesman who created the Peace Corps, Job Corps, Head Start, and served as U.S. Ambassador to France. Although known for his eloquence, he was unable to articulate the challenges he faced with Alzheimer’s. So Maria now feels compelled to give voice to this disease which boasts no survivors. With an ever greying U.S. population she challenges fellow baby boomers to pick up the cause before cases of Alzheimer’s reach epidemic proportions. It’s a disease that won’t be cured without proper funding for research and she says it’s up to us to encourage congress to allocate more resources to those efforts. If we don’t she believes the healthcare costs of caring for patients will spiral out of control. While her family had the financial resources to deal with her dad’s caregiving she understands that most families are not as fortunate. And, of course all the money in the world does nothing to relieve emotional burden. She laments the fact that more isn’t known about the disease itself saying “I could never understand how my father could say the Hail Mary and not know who I am or not know what a spoon is.” Her fear is that she too may one day have dementia and that her children would then be the position where they would have to care for her.
Even for a former nurse like Evenly Malloy, the caregiving needs for her husband were too much for her to handle alone. She made the hard decision to put him into full time care and is thrilled with the level of attention he receives at the Jennings Center for Older Adults. In the two years since we initially met with the Malloy’s’, Bill’s condition has deteriorated significantly. He no longer recognizes the woman he’s been married to for nearly half a century. Evelyn laments “I already miss him, he’s already gone, I already don’t have a husband.” That doesn’t stop her from visiting regularly Bill, even though the relationship is painfully lopsided.
I cracked open Lisa Genova’s novel, “Still Alice,” while on a cross country flight and couldn’t put it down. Not only was the writing superb, the approach was enthralling. It was a look at Alzheimer’s from the inside out—a first person account of what it felt like to start getting Alzheimer’s. I found the whole book so illuminating that I tracked down the author to see if she would be willing to be included in the documentary. Thankfully she was available. When I sat down and spoke with her she explained that she had met and followed several people at the beginning stages of early onset Alzheimer’s. They were still coherent enough to discuss their mental lapses and share the disease progression on their terms. As a Harvard trained Neuroscientist, Lisa Genova already understood what was happening chemically inside their brains—and most importantly she was able to put it in simple, storytelling terms for those of us who are less scientifically inclined. Her enthusiasm and on camera charisma take the documentary to a new level. One of the points Lisa makes in her novel about those with Alzheimer’s that I find particularly poignant is that “it’s important for us to understand that we are more than what we can remember, that if I don’t remember what happens today-if I have Alzheimer’s and tomorrow I’m not going to remember this conversation with you, it doesn’t mean that this conversation didn’t matter.”
An opportunity to sit down and interview Senator Jay Rockefeller is no small feat, but getting him to share intimate details of his personal life puts the discussion on a whole different realm. That is exactly what happened as Senator Rockefeller opened up about his relationship with his mother, Blanchette. Stricken with Alzheimer’s in her final years, I wanted to know more about this woman that her son refers to as “a starburst.” Her status as a philanthropist, especially as a patron to the arts is well documented. She transformed the Museum of Modern Art into the institution it is today as both a major benefactor and as one of the most impactful presidents of that institutions history. What I didn’t know, which Senator Rockefeller shared, was that Blanchette would periodically buy works of obscure artists knowing word of her patronage would aid their careers. Blanchette’s memory losses later in life were covered up by her husband initially. Her children only became aware of the situation when her dementia became very apparent. Jay Rockefeller spent considerable time with his mother as she suffered with Alzheimer’s, explaining how the disease robbed his mother of her dignity and grace as it ravaged her mind. He talked of incidents of his beloved mother becoming violent and throwing things at him and his heartbreak when she no longer remembered his name. Most poignantly the Senator discussed his own torment of trying to disassociate his painful memories of her with Alzheimer’s and how they interfere with the memories he would prefer, of an incredibly accomplished woman and loving mother. It has been years since she has passed, yet scars remain. It’s especially impressive that a man of his stature would publicly expose his emotional vulnerabilities. Even more impressive is his desire to try to spare other families suffering with Alzheimer’s the pain he endured. It’s in his mother’s honor that he established the Blanchette Rockefeller Neuroscience Institute—to find solutions for neurodegenerative diseases in an open atmosphere that encourages creative thinking.
For researchers the hallmarks of Alzheimer’s have been what they can see in the brain: Beta Amyloid Plaques and Tangles made up of a substance call Tau. Until recently the only way to make a definitive diagnosis of Alzheimer’s has been with autopsy validation. While that’s still the gold standard, the development of Pittsburgh Compound B has changed the equation substantially. Pittsburgh Compound B, also noted as PiB, is a radioactive substance injected into a patient. When used in a PET scan, PiB enables researchers to see the buildup of plaques in the brains on live patients. While the development of PiB is perhaps the biggest breakthrough in Alzheimer’s in the past couple of decades, all around the world scientists are looking at more ways to identify and treat Alzheimer’s. In a somewhat unprecedented move in the international scientific community Genome Wide Association Studies (GWAS) are sharing information about genes that may put people at increased risk for developing Alzheimer’s. At the Blanchette Rockefeller Neuroscience Institute researchers believe they can attack the disease by concentrating on the brains synapsis. They have several compounds that they say in animal models appears to reverse the effects of dementia. The need to move quickly toward better diagnostic methods and treatments is critical as the biggest risk factor—age—is also the most rapidly advancing demographic in the world. Through the miracles of science we are living longer than ever before, and that means diseases like Alzheimer’s will begin to reach epidemic proportions and swamp global healthcare systems if left unchecked.
While we can’t prevent Alzheimer’s pathology, we can position ourselves to reduce our risk of the cognitive loss associated with the disease. Researchers now know that there are many cases of people with an enormous amount of Alzheimer’s pathology in the brain who show little if any decline in mental agility. Experts believe that people who maintain social skills, like meeting new people, especially in advanced age, tend to fare much better than those who live more isolated lifestyles. Diet also plays a role. All the benefits we hear of eating an antioxidant rich Mediterranean diet can help preserve our mental acuity. Preventive steps for strokes and heart disease appear to be great guidelines in reducing memory loss. We need to exercise our bodies and our minds. Every time we learn something new we’re helping to build new pathways in our brain. It’s more than just doing jigsaw or crossword puzzles, but rather learning brand new information that seems to be most beneficial. So taking up a foreign language, learning a musical instrument or taking dance classes can help keep you at your mental best. One the reverse side, researchers now understand what puts people at a greater risk of getting dementia. High blood pressure in middle age and diabetes later in life are known risk factors. Another known cause of dementia is repeated head trauma. So you may want to reconsider taking up kick boxing after you retire.