Wednesday, March 29, 2017

Congrats to Maria Shriver!

I have met this extremely dedicated woman. She is amazing and fights for the cause as much as she can. Congratulation on her Lifetime Achievement Award through the Alzheimer's Association. #ENDALZ

Maria Shriver honored with Lifetime Achievement Award
at National Alzheimer’s Dinner

On March 28, renowned journalist Maria Shriver received the Alzheimer’s Association Lifetime Achievement Award at the National Alzheimer’s Dinner, part of the 2017 Alzheimer’s Association Advocacy Forum. The Lifetime Achievement Award recognizes an individual who has enthusiastically dedicated them-self to raising awareness of the fight to end Alzheimer’s disease and to increasing support for the millions of families affected.
Harry Johns, Alzheimer’s Association president and CEO, introduced Shriver by calling her “an architect of change” who had dedicated herself to confronting the many challenges facing the world, especially those that impact women.
“In response to the devastating consequences that Alzheimer’s has on women as people living with the disease and caregivers, Maria created the Women’s Alzheimer’s Movement to inform women of their elevated risk and to ignite increased support for research,” Johns said. “By sharing her own story, and through her tireless, relentless efforts, Maria has illuminated the disease in the public eye, helping to create a dialogue that is so important around a disease and a diagnosis that was for too long hidden in the shadows.”
Shriver gracefully accepted the recognition but vowed that the award doesn’t mean she’s done fighting this disease.
“When you’re given a lifetime achievement award, it's usually when you’re about to retire and hang up your heels and step out of the arena,” Shriver said. “But for me, nothing could be further from the truth. Fourteen years after coming face to face with Alzheimer’s in my own family, I feel like I'm just getting started. I’m energized, I’m committed, and I’m ready to do whatever it takes to wipe out this mind-blowing disease.”
Shriver added that she’s focusing her mind, energy and will on what’s possible in the fight against Alzheimer’s rather than the limitations.
“I truly believe with all my heart that the women and men in this room — and those we represent — are within striking distance of our foe,” she said. “If enough people put their minds and their efforts and their energy to an issue, they change the trajectory of that issue. AIDS activists did it, cancer activists did it — and we, the Alzheimer’s agitators, instigators and warriors in this room can do it as well.”
Actor and dedicated Alzheimer’s Celebrity Champion Peter Gallagher emceed the event. Gallagher told the crowd that he was in Washington — and participating in the fight to end Alzheimer’s — because of his mother, who lived with the disease for nearly the last 20 years of her life.
“Alzheimer’s is excellent at making everyone involved feel powerless and alone,” Gallagher said. “You can’t prevent it, you can’t cure it — yet — more and more people are getting it, very few can afford it, and nobody’s prepared to cope with it. If the one who gets it was the family’s navigator in life, like my mother, the fabric of the family can be torn irreparably by the long-term challenges of finding a way through. As advocates, you give us voice and strength and hope as you inspire our leaders to make Alzheimer’s research and NIH funding a top priority so a cure can be found.”
Mark Donham of Lake Oswego, Oregon, told the crowd why he’s an advocate. Donham’s wife Chris was diagnosed with Alzheimer’s in her 40s, and he quit his job to care for her full-time until she died in her early 50s.
“Alzheimer’s radically changed our life’s path, including our plans and dreams, but it didn’t change our love for one another,” Donham said. “We made the most of each moment that we shared, for which my life has been made richer.”
With five grand nieces and nephews all under age 10, Donham said he’s part of the cause so that one day no one else in the family will have to experience the disease.
“As advocates, it’s not a one-time visit to a public official or writing an op-ed piece. It’s a relentless commitment to keep fighting for the research funding, better care and improved support,” he said. “It’s our continued commitment and actions that are making a difference.”
Bob Thomas, an Alzheimer’s Impact Movement (AIM) board member, presented the AIM Humanitarian Award to Rep. Tom Cole (R-Okla.), chairman of the Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies. The award recognizes public officials who have made a significant policy contribution to advancements in research, and care and support for people with Alzheimer’s disease and other dementia's.
Thomas said that Cole was instrumental in the historic $350 million increase in Alzheimer's research funding at NIH for fiscal year 2016 and the additional bump in fiscal year 2017, which awaits final action by Congress.
“Tom Cole provides a vision for Alzheimer’s research that inspires his colleagues,” Thomas said. “He has an impressive willingness to translate his commitment into action. He has a heartfelt empathy for those affected by Alzheimer’s disease. Because of champions like Tom Cole, we have hope for a world without Alzheimer’s, and soon. Because of champions like Tom Cole, hope springs eternal.”
Cole’s father died from Alzheimer’s, and he and his brother watched the physical and mental toll it took on their mother as the primary caregiver. Cole vividly recalls the day his father went to live in a care facility to help ease the burden his mother faced. “My father was a really tough guy,” he said. “Hearing him cry as we left was the hardest single thing I went through in my life.”
Cole added: “Thank you from my family and countless others, and for people in the future who will never go through Alzheimer’s. People will tell you it can’t happen, and that’s a fallacy. We can do this if we make the investment.”
Alzheimer’s Association Zenith Society member and advocate Jane Cahn of Hudson Valley, New York, presented the evening’s second Humanitarian Award to Rep. Nita Lowey (D-N.Y.), ranking member of the House Appropriations Subcommittee.
Cahn’s late husband, Andy, was a board member and president of the Alzheimer’s Association Hudson Valley Chapter, a caregiver support group leader, a dedicated fundraiser and donor, and an Alzheimer’s Association Ambassador to Lowey.
“Andy should be here presenting this award tonight instead of me, but I know he would be as happy as I am to acknowledge the real progress we’re making in this fight, thanks in large part to champions like Congresswoman Lowey,” Cahn said. “Her steadfast commitment to the cause has helped us achieve momentum at the federal level, and I know we are all extremely grateful for her support.”
Lowey said that while it’s an honor to be an elected official, constituents play the larger role in creating change. “I always say that when people come in to see me that I’m privileged to serve in Congress, but never forget that you are the power. You are the ones that make it happen,” Lowey said. “When you’re walking the halls of Congress knocking on doors, you make the difference.
“Every one of us in this room has been touched by Alzheimer’s disease,” she continued. “There’s no doubt in my mind that if we support the investment in biomedical research, we will make significant advancements. That’s why the work you’re doing is so very crucial.”
Myriam Marquez of Seattle was honored with the Alzheimer’s Association Advocate of the Year Award. Prior to her diagnosis in 2009, Marquez was an attorney in a family law, immigration and bankruptcy private practice and a public defender. Among other accomplishments, Marquez is a past member or the Alzheimer’s Association Early-Stage Advisory Group; a participant in the DIAN-TU clinical trial, a study to understand a rare form of Alzheimer’s disease that is caused by a gene mutation; and an ambassador to Sen. Patty Murray (R-Wash.).
After learning she was living with Alzheimer’s, Marquez said she felt emotions ranging from relief to despair — and then the warrior in her took over.
“What I love the most in this journey are the wonderful people who have Alzheimer's and other dementias, their caregivers and the many others who are doing what they can to help find a cure, particularly the staff and volunteers of the Alzheimer's Association,” Marquez said. “I’m a witness to the growing army of warriors fighting for a cure.”
The inaugural Alzheimer’s Association Young Advocate of the Year Award was presented to journalist and TV personality Liz Hernandez of “Access Hollywood.” The award honors a member of the next generation of Alzheimer’s advocates who is dedicated to raising awareness of the disease and the cause among a younger audience.
Hernandez’s mother was diagnosed with Alzheimer’s three years ago at the age of 67, and Hernandez served as primary caregiver until her mother entered a care facility. She is extremely passionate about raising awareness of the warning signs of the disease in order to help other families recognize the symptoms and access care.
“I'm thankful to my family, my friends, people who have become my friends and were brought into my life because of this journey, like Maria Shriver, who took me under her wing, and the incredibly gracious staff at the Alzheimer's Association,” Hernandez said. “It's because of their efforts that I've been able to meet other people like my mom and like myself facing the same hurt and the same hurdles but, luckily, the same passion to give the ones we love a voice and to spread awareness.
“Although I'm appreciative and humbled by this honor, I've only done what any daughter would do for her mother. I accept this on behalf of my mom, Armida. She's the hero in this story. I’ve fought for her the hardest, and she has made me the strongest. She's given me the gift any mother wants for her daughter, and that is compassion and strength.”
Johns returned to thank everyone for their efforts on behalf of the cause — and to encourage advocates to continue the fight. “You make all of our successes happen,” he said. “You make a different in people’s lives each and every day. We should be very proud of what have accomplished together, but we should not be satisfied ... Remember that the leverage you have as an advocate means that you can change the course of this disease for millions and millions of people.”
Gallagher closed the dinner by offering encouragement to advocates not only for their Hill Day visits on Wednesday but also for the fight at large.
“Go to Capitol Hill with the knowledge and power that an entire community of Alzheimer’s advocates and families is standing with you. Let’s make this happen for all those who inspire us to relentlessly pursue our vision of a world without Alzheimer’s and for our children,” he said. “My mother used to say, ‘You show me your friends and I’ll tell you who you are.’ If she were here tonight, she’d be very reassured.”

Tuesday, March 7, 2017

The Scary Truth about Alzheimer's. The Disease that could Bankrupt Medicare.

Alzheimer's: The disease that could bankrupt Medicare

By Sandee LaMotte, CNN
(CNN)Every 66 seconds this year, an American will develop Alzheimer's disease, according to the Alzheimer's Association annual report, released Tuesday.
By the year 2050, that number is expected to double to one every 33 seconds.
Those startling statistics are mirrored worldwide. In 2016, the World Alzheimer's Report estimated that 47 million people around the globe had dementia. To put that in perspective, it's a bit more than the current population of Spain.
And because nine of 10 people with dementia in low- and middle-income countries and half of those in high-income countries are not diagnosed, the global number of people diagnosed is expected to triple by 2050.
"What is driving these numbers is that there is no disease modifying treatment, no prevention and no cure," said Ruth Drew, director of family and information services for the Alzheimer's Association. "And while U.S. deaths from Alzheimer's have doubled in the last 15 years, an increase of 89%, deaths from other major diseases have been declining."
For example, said Drew, deaths from heart disease, the No. 1 killer of Americans, have declined by 14% over the same period while HIV deaths have dropped by 54%, stroke deaths by 21% and prostate cancer deaths by 9%.
"Other diseases have declined because of significant investments in research that produce treatments and techniques to reduce risk, sometimes even a cure," Drew said.
"The issue is mainly funding," agreed Rudy Tanzi, a Harvard professor of neurology who also heads up MassGeneral's Genetics and Aging Research Unit. "We are a knowledge-rich yet budget-constrained field. We have many clues about how to stop Alzheimer's, especially from recent genetic studies, but insufficient funds to explore how."

The cost to society

Experts point out that without additional funding and a breakthrough, Alzheimer's could be the disease that breaks the nation's health care bank. In 2017, for the first time, total costs for caring for those living with Alzheimer's and other dementias hit $259 billion -- over a quarter of a trillion dollars.
"Already, Alzheimer's consumes one in every five Medicare/Medicaid dollars," Tanzi said. "With 71 million baby boomers headed toward risk age, this will go to one in three, perhaps in the next decade, at which point Alzheimer's will single-handedly collapse Medicare/Medicaid."
"It will also impact the work force and our economy," Drew added. "Because every family affected will be making caregiving choices they will have at home. They will be absent more for doctor visits ... and other caregiving duties."
There's more. The association's report adds another startling statistic, the hidden cost of caregiving: In 2016, those who took care of loved ones with dementia provided an "estimated 18.2 billion hours of unpaid assistance, a contribution to the nation valued at $230.1 billion."
And that's just the monetary impact of caregiving. Experts say no one can put a number on the emotional and health impact of caring for a loved one with dementia.
"Alzheimer's is like a leaky boat in a hurricane," said Huntington Potter, director of the Rocky Mountain Alzheimer's Disease Center. "We have to both bail like mad and fix the leaks. Researchers are working hard to fix the leaks, but it will take time; for now, the main load is carried by the bailing caregivers. They are on the front lines in this war against Alzheimer's."

Toll of caregiving

Kristen Beatty is one of those fighting on the front lines. She and her brother, Doug Rider, are caring for their 78-year-old father, Ray, who was diagnosed with Alzheimer's about 10 years ago.
"My father was a lifer in the Air Force, a colonel, a fighter pilot and a Vietnam veteran," Beatty said. "My mom, Sue, was a proper military wife, and between them, they had a 'don't ask, don't tell' attitude about informing us kids about his illness."
It wasn't until they took over their dad's care that they learned just what their mother had been going through.
"He developed a sense of paranoia and thought people were stealing from him and believed everyone was out to get him," Beatty said. "He would go to bed early but then get up and was up all night long, arguing with mom.
"They would have conversations and arguments over and over again. She wasn't getting any sleep. She was exhausted with the constant care and pressure. But she never once complained. She didn't want us to be scared."
But in 2012, after five years of caregiving, Sue Rider dropped dead of a heart attack.
"We say that she died of a broken heart," Beatty said. "Died from the stress of caring for him. She was eating super healthy, walking every day, taking very good care of herself. So I truly believe it was the stress.
"It's awful, just awful," she said with a catch in her voice. "My brother and I feel so guilty, because we could have supported her, but she would not ask for help; she would not consider moving him into a facility; she would not go to support groups."
Today, Beatty works with the Alzheimer's Association to call attention to the burden of caregiving. She points people to the resources available to them online and stresses that no one should feel as if they are alone.
"My mom was the glue of the family, a genuine sweet and amazing soul. It's painful, really painful. What I do today is all powered by supporting her, so that it wasn't in vain," Beatty said. "We collectively as a nation need to step up, because Alzheimer's is an epidemic, and our health care system is not set up to support caregivers."
The cost of Alzheimer's, including caregiving, is a reality that will soon affect everyone, say experts.
"A lot of people think that 'Alzheimer's doesn't affect me because I'm not old' or 'I don't have it in my family, so it's really not my problem,' " Drew said. "What we've come to understand is, if you have a brain, you're at risk for Alzheimer's disease."
"If we all live to age 85 -- and who doesn't hope to live at least that long? -- almost half of us will have Alzheimer's disease," Potter said, "and the other half will be caregivers. No one is immune."