NIH's Collins stresses progress, power of hope at Advocacy Forum

On the morning of June 18, more than 1,200 energized advocates filled the ballroom at the 2018 Alzheimer's Association AIM Advocacy Forum to hear from Alzheimer's experts and people living with the disease.

Keynote speaker Dr. Francis Collins, M.D., Ph.D., director of the National Institutes of Health (NIH) and a longtime champion of the Alzheimer's cause, took the stage to a standing ovation. Collins returned the admiration by calling the Alzheimer's Association "an incredibly important friend to the NIH" before offering encouragement to advocates as they prepared for their Hill Day meetings with elected officials.

"We all know how important it is to conquer this dreadful scourge that affects so many people during what should be a wonderful time in their lives," Collins said. "Each of you is dreaming, as I do, of a time where we can say Alzheimer's is history. We have a ways to go, but together we've made a lot of progress.

"Explain [to lawmakers] why Alzheimer's is a battle worth winning and that we're on a path to success. Wear your purple and get ready."

Collins provided a broad overview of research advancements as well as the financial burden Alzheimer's and other dementias place on our nation's economy. Current annual costs are $277 billion, and it's estimated that figure could rise to $1.1 trillion by 2050. The first goal of the National Plan to Address Alzheimer's Disease is to prevent and effectively treat Alzheimer's by 2025, but even delaying the onset of the disease could have a major impact.

"I'm not saying that's the goal I'll be satisfied with, but it's an intermediate goal," Collins said. "Delaying the onset by five years could save $376 billion a year. The goals are not only about the economy, of course — they're also about the terrible, tragic toll the disease takes on individuals and their families. That's what unites us all and brings us here today."

Collins touched on advances in imaging techniques as well as the NIH's Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, which aims to revolutionize our understanding of the human brain. Efforts such as BRAIN in addition to the work of dedicated scientists focused on solving the riddle of Alzheimer's exhibit great potential.

"If this was simple, we would've figured it out by now," Collins said. "The good news is we have more ideas and more people working on this problem and more potential to find solutions than ever before. All of us working in this field are excited and optimistic about the path we're traveling."

Collins closed with a favorite quote from poet Peter Levi: "Hope in every sphere of life is a privilege that attaches to action. No action, no hope."

"We at NIH are all about action, but we need you as partners," Collins said.

Thank you from the bottom of my heart. It's a privilege to be a partner with you. Now let's get out there and take action and provide the hope that people are waiting for in real terms."

Collins also sat down to talk with Dr. Jon LaPook, CBS News chief medical correspondent, who spent 10 years reporting on the impact of Alzheimer's on one couple affected by the disease. The discussion ranged from the potential benefits of physical and mental exercise in staving off Alzheimer's to the role sleep deprivation may play in the development of dementia to, again, the importance of prevention.

"We know that Alzheimer's is a very slow process that begins over more than a decade before symptoms appear," Collins said. "The ability to identify people in that circumstance and begin intervention is one of the greatest hopes we have."

A photographic memory fades

LaPook also talked with Julie Berger, 78, who was diagnosed with Alzheimer's four years ago, and her husband of 58 years, Les, also 78, of Vancouver, Washington. LaPook began by asking the couple when they began to realize that Julie was having difficulties with her once-photographic memory.

"I knew that there was something going on because I couldn't remember things that I could before," Julie said. "If Les would ask me a question, I'd make up an answer."

"I became aware there were issues, but for the longest time, I thought it was because we were both very busy," Les said. "I was in denial."

The couple wasted no time in seeking medical attention — Les is a retired physician — and learning as much as they could about the disease and their new reality.

"I'm a researcher, so I went to find out what the heck Alzheimer's is," said Julie, who worked for the Red Cross for 50 years. "I had actually never heard the word, believe it or not. I was surprised by what I didn't know about Alzheimer's."

Stigma associated with an Alzheimer's diagnosis is common, and LaPook asked if the couple felt any awkwardness in their relationships with friends or interactions with strangers.

"I made it my goal to show people that there shouldn't be stigma attached to Alzheimer's," Julie said. "I tell everybody I have Alzheimer's and the look on their face is, ‘Oh, she's saying the word.' Next, they give me a hug. I've gotten so many hugs. I always speak from the heart, and that seems to resonate with folks."

When asked about the challenges associated with caring for a person living with Alzheimer's, Les admitted to sometimes feeling lost.

"We all understand the memory issues and the fact that your loved one can ask you the same question 30 times in 20 minutes," Les said. "I've had a much more difficult time with the reasoning issues. Julie was always the go-to person. When the vacuum would break, I didn't fix it, she did. Now I'm the one who has to figure out those things."

The morning session concluded with remarks from Lorey Esquibel, director of operations for the Association's New Mexico Chapter, and her brother, David, who was diagnosed with younger-onset Alzheimer's six years ago at age 53. Lorey said that once David was diagnosed, it was clear he was going to join the fight against the disease.

"David was determined not to be on the sidelines," she said. "Advocacy has given him a purpose: to change the conversation around Alzheimer's and to bring hope for prevention, treatment or a cure … He doesn't consider himself brave. I disagree. He's very brave."

David powerfully stated his single-sentence statement of purpose: "I advocate for a future without Alzheimer's."

Consultant discusses the political divide

In the afternoon, advocates reconvened for the AIM Luncheon. Bruce Haynes, a CNN contributor and managing director and vice chairman of public affairs of Sard Verbinnen & Co., provided insight on the current political climate and what it could mean for the future of Alzheimer's advocacy.

Haynes called the Alzheimer's cause one of the most effective movements in Washington today, attributing it to the dedication of Alzheimer's Association and AIM advocates and policy staff nationwide.

"Your work is admired by everyone in this town," Haynes said. "It's not just important — it's also making a difference."

The current political climate, in simple terms, is divided and fractured, Haynes said. As a result, advocates may wonder how effective they can be. With the uncertainty of mid-term elections looming, Hayes stressed that the climate could get even worse, but that it's more important than ever for advocates to keep doing what they're doing.

"You've achieved substantial success and should be congratulated for that. Now you'll have to work harder," he said. "You can't leave this progress behind. I strongly encourage you to keep doing what you've been doing and to redouble your efforts.

"We're all looking for something good to emerge from this divided environment. You have the opportunity to be that thing."

Speaker Florence "Pippy" Rogers, an Alzheimer's Association Ambassador from Georgia, believes the necessity to find a cure for Alzheimer's transcends political affiliation.

"We steadfastly continue to work and use our voices to ensure Alzheimer's research is a national priority, and we don't have any aisle that divides us," said Rogers. "I will step across the aisle to address the needs for all those affected by Alzheimer's disease rather than get involved in party politics. Alzheimer's is not a blue issue or a red issue. It's a purple issue."

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