Faces of Alzheimer’s emerge on Capitol Hill

On April 9, spring arrived in Washington, D.C., bringing more than blooming cherry blossoms and blue skies to Capitol Hill — nearly 900 Alzheimer’s advocates met with lawmakers to encourage their support of legislation and funding critical to the fight against Alzheimer’s disease.

April 9, 2014

On April 9, spring arrived in Washington, D.C., bringing more than blooming cherry blossoms and blue skies to Capitol Hill — nearly 900 Alzheimer’s advocates met with lawmakers to encourage their support of legislation and funding critical to the fight against Alzheimer’s disease.

Hill Day, as it is known to advocates, is the culmination of the Alzheimer’s Association Advocacy Forum, an event that brings passionate individuals to the nation’s capital to learn about Alzheimer’s issues, share their personal challenges with the disease and request legislative support from senators and representatives.

Mackenzie Kelley, 27, and Drew Levin, 30, from Minneapolis came to the Hill to share their stories with Sen. Al Franken (D-Minn.) and other members of Congress. Kelley and Levin are responsible for the creation of the Young Champions group at the Alzheimer’s Association Minnesota-North Dakota Chapter, a diverse group of emerging leaders engaged in defeating Alzheimer’s. In just three years, the group has grown from 10 to over 100 members.

Their visit was part of Franken’s Wednesday morning breakfast, where he hosts all Minnesotans visiting Washington and treats them to Mahnomin porridge made from wild rice harvested from the White Earth Indian Reservation in the northwestern portion of the state.

Waiting for the meeting to begin, first-time attendee Levin, whose uncle is living with Alzheimer’s, said the past few days at the Forum had prepared him for the conversation.

“The Forum was just as advertised — a crash course in what we’re doing to fight Alzheimer’s and the state of the disease. I feel knowledgeable and able to speak about the issues here and when I go back to Minnesota.”

Franken greeted a crowd of about 60 individuals, more than 30 of which were from the Association’s delegation. He recognized the group dressed in purple sashes as Alzheimer’s advocates and spoke to the importance of increasing research funding.

“We need to do a lot more research on Alzheimer’s at the NIH,” said Franken, who lost his mother to the disease. “In addition to the human cost, this disease is a huge economic impairment. It costs a tremendous amount. Finding a cure for Alzheimer’s is the kind of research we need to do.”

Advocates spoke with Elizabeth Winkler, a Franken staffer, and shared materials highlighting Alzheimer’s as the most expensive disease in America. In addition, they asked for the support of an additional $200 million for Alzheimer’s research at the National Institutes of Health (NIH) as part of a commitment to a strong National Alzheimer’s Plan. One of the plan’s major objectives is to find methods of treatment and prevention for Alzheimer’s by 2025.

Winkler assured advocates that Franken, a co-sponsor of the Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act, and a member of the Congressional Taskforce on Alzheimer’s Disease, is a champion for the cause.

“He is passionate about this issue,” Winkler said. “He is tirelessly seeking funding for the NIH.”

Kelley, who lost her mother to the disease a year and a half ago, said meeting with elected officials face-to-face is critical to moving the cause forward.

“We need to continuously share our stories, and our representatives and senators need to hear them, because we need more spokespeople in Congress,” she said. “And that’s what these meetings are about. It’s not about memorizing facts all the time. Our stories will make them act.”

Franken posed for photos and thanked advocates for their visit, acknowledging the power of the group’s trek to the Hill.

“You are an army of purple, and people are taking notice,” he said.

A delegation of advocates from the Alzheimer’s Association Midlands Chapter was able to secure a meeting with Sen. Deb Fischer (R-Neb.).

Chris Nielson, an advocate from Omaha, Neb., was attending his first Forum to speak up for further research and support for those facing the disease. Three generations of his family, including his great-great-grandfather, great-grandma and two great-aunts, had Alzheimer’s. Recently, his mother moved in with his grandfather, who is living with dementia.

“My mom is his caregiver, and she also works full time,” he said. “She doesn’t have any time to just take care of herself.”

Nielson told the senator about the overwhelming costs of Alzheimer’s: Nearly one in five Medicare dollars is spent on a person with the disease. He also highlighted the success of research funding in combating other conditions, like cancer, HIV and cardiovascular diseases, and asked that Fischer support a similar investment in Alzheimer’s research.

“Costs are expected to skyrocket,” Nielsen said. “This is an investment that will save money and lives in the long term.”

Fisher shared that her sister-in-law, 65, developed younger-onset Alzheimer’s disease and is currently living in a nursing home. She showed the delegation paintings in her office that her sister-in-law had created.

“You don’t have to convince me,” said Fischer. “This is an evil, sad disease.”

Nichelle Horton-Brown, M.D., also from Omaha, shared her experience with the disease both personally and professionally. As a grand-daughter, she helped her entire family care for her grandma, who died of Alzheimer’s three years ago. As a physician, she treats many geriatric patients struggling with the disease.

Horton-Brown also shared her perspective on the disease as a woman.

“Recent statistics show that a woman in her 60s is twice as likely to develop Alzheimer’s in her lifetime as she is to develop breast cancer,” she said. “As a physician and a woman, that is just astounding to me!”

Horton-Brown asked for the senator to co-sponsor the Alzheimer’s Accountability Act, which would require the NIH to submit an annual Alzheimer’s research budget proposal directly to Congress and the president, allowing scientists to speak directly to Congress about the resources needed to implement the National Alzheimer’s Plan.

Fisher agreed to review the bill and encouraged the advocates to arrange a follow-up meeting to discuss it with her further when she is in Nebraska.

“I appreciate you folks coming to Washington,” she said. “I hope to see you again in the district.”

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NIH Director Collins among those honored at National Alzheimer’s Dinner

At the National Alzheimer’s Dinner April 8, advocates, members of Congress, scientists and leaders in the fight against Alzheimer’s gathered to celebrate advances in the cause to end the disease. Honorees included Dr. Francis Collins, director of the National Institutes of Health, who received the Alzheimer’s Association Ronald and Nancy Reagan Research Award, presented annually to an individual working to find innovative approaches to Alzheimer’s treatment, prevention and care.

At the National Alzheimer’s Dinner April 8, advocates, members of Congress, researchers and leaders in the fight against Alzheimer’s gathered to celebrate advances in the cause to end the disease.

“We have so much to be proud of and to celebrate while we are here together this evening, including an unprecedented $122 million increase in funding for research, caregiver support, education and outreach,” said Evan Thompson, National Dinner co-chair, former chair of the Association’s national board and current chair of the Alzheimer’s Impact Movement (AIM). “This accomplishment was driven by you and your willingness to share your personal stories with your elected officials, so they could recognize the need to push this cause forward.”

Harry Johns, Alzheimer’s Association president and CEO, thanked attendees for their successful advocacy efforts. “We now have hundreds of thousands of advocates around the country letting lawmakers know what they need to do,” he said. “We appreciate what you do to keep them informed. What I want you to walk away from tonight is the realization that because of your work, we can truly have a world without Alzheimer’s.”

The Alzheimer’s Association Humanitarian Award recognizes public officials who have made a significant policy contribution to advancements in research and enhanced care and support for people with Alzheimer’s disease. This year’s honoree, Sen. Jerry Moran (R-Kan.), played a vital role in the increase in Alzheimer’s funding included in the 2014 federal budget.

“This accomplishment is among the most profound I have witnessed in my 16 years of advocacy, because it marks 2014 as the year that Alzheimer’s research funding initiated its first step in the ramp-up to a cure,” said Bob Thomas, National Dinner co-chair and AIM treasurer. “No one could have done this alone — credit belongs to Association advocates and to other key legislators in Congress. Yet, I assure you that Jerry was a true leader, providing vision with passion and, in these times, courage, to make this happen.”

Moran said he was honored by the recognition but that people in the audience are the “true champions” in the fight against Alzheimer’s. “I commit to you that during my time in the U.S. Senate, I will be a relentless advocate to see that Alzheimer’s becomes a preventable, treatable and curable disease,” he said. “But the cause has a lot less to do with me and lot more to do with you.”

Moran also confirmed how vital it is for advocates to visit with lawmakers. As it turns out, Thomas himself made an impression on Moran.

“It was only when one of your advocates called on me and made your case that this issue became a priority for me,” he said. “Bob Thomas was that person for me. He sought me out — and then I couldn’t get rid of him.”

The Alzheimer’s Association Ronald and Nancy Reagan Research Award is presented annually to an individual working to find innovative approaches to Alzheimer’s treatment, prevention and care. The 2014 recipient is Dr. Francis Collins, director of the National Institutes of Health (NIH), where he oversees the work of the world’s largest research enterprise, spanning the spectrum from basic to clinical research.

At last year’s Forum, Collins announced that he was spending $40 million from his discretionary budget to fund innovative Alzheimer’s projects. According to Johns, who presented Collins with the award, Collins fulfilled that promise with the funding of important research aimed at advancing treatment and validating drug targets. In addition, Collins established the Accelerating Medicines Partnership, a public-private group bringing together government researchers with leading drug companies and nonprofits, including the Alzheimer’s Association.

Collins accepted the award by confirming the deep commitment NIH has for the Alzheimer’s cause — and that breakthroughs will happen only with additional funding.

“You cannot look at the human cost of the disease and not be affected,” he said. “I want to assure you that we’re moved by it, but we’re also excited about the scientific opportunities. Alzheimer’s disease is revealing its secrets, and we’re not limited by ideas. We have amazing talent that is champing at the bit to solve Alzheimer’s. We’re limited by resources.”

Collins also downplayed receiving the honor while pledging to continue living up to it.

“In all humility, I’m not sure I or my colleagues at NIH deserve to be recognized just yet,” he said. “We’ve not cured Alzheimer’s. We’ve not prevented a case. That’s our goal, a world without this disease, and we will not rest until that has been achieved. But we need your help. We do want to live up to your hopes and expectations because they’re ours, too. We’re not just the National Institutes of Health — we’re the National Institutes of Hope.”

Sen. Edward Markey (D-Mass.) presented the Alzheimer’s Association Sargent and Eunice Shriver Profiles in Dignity Award, which recognizes individuals whose actions have promoted greater understanding of Alzheimer’s disease and its effects on diagnosed individuals, families and caregivers. Marshall Gelfand, his daughter Elizabeth Gelfand Stearns and The Judy Fund were honored for exemplify the leadership and devotion to fighting Alzheimer’s that are behind the award’s creation.

In 2003, Marshall Gelfand started The Judy Fund in the name of his beloved wife, who died with Alzheimer’s in 2004. Since its inception, The Judy Fund has become the fastest-growing family fund in the history of the Association and has raised over $5 million in support of the Association’s research and public policy efforts. Marshall has served on the Association’s national board of directors and, thanks to his generosity and that of his family, the Gelfands are members of the Zenith Society, the Association’s highest level of philanthropy.

“Simply put,” Markey said, “Marshall Gelfand is a philanthropic phenomenon of the highest order.”

Alzheimer’s advocate Maria Shriver congratulated the Gelfands via video, commenting that her parents would be proud the family was receiving the award.

“The Gelfands have the passion, the commitment and belief that we can wipe out this disease in our lifetime,” Shriver said. “My parents would be so pleased to honor a family that has the dignity, passion and determination your family has fighting on the front lines of this disease.”

“Our father has shown us all what one family can do to help change the world,” said Elizabeth Gelfand Stearns when accepting the award. “Our father’s ultimate battle, his fight against Alzheimer’s disease, is a very personal one — it’s one that honors our mother and is a way to protect us: his children, grandchildren, great grandchildren and the future generations of our family. His fight is an example of leading from the heart.”

The Outstanding Advocate Award was presented to Mary Gerard of New Jersey, a critical care nurse who has also worked in drug safety for the pharmaceutical industry. Gerard cared for her mother, Helen, who passed away with Alzheimer’s in 2012, and has been devoted the Alzheimer’s cause since becoming an advocate in 2010. She is an Alzheimer’s Association Ambassador to the district of Rep. Chris Smith (R.-N.J.).

Smith said Gerard elevates Alzheimer’s priorities to his staff both at home and in Washington: “By her words, by her actions and by her advocacy, Mary has helped my colleagues and I understand the impact of Alzheimer’s on families and the public at large.”

Gerard said that people affected by Alzheimer’s are best qualified to bring the Association’s messages to Capitol Hill because of their understanding of the disease and what it does to their lives and families.

“We’ve lived with it and dealt with it in ways people without that experience cannot imagine,” she said. “It’s so important to speak with our elected officials both here in D.C. and at home because no one can tell them how the disease impacts our lives like us.”

Alzheimer’s Association National Early-Stage Advisor Terry Berry talked about her experience with early-onset dementia. Diagnosed in 2011 at the age of 56, the energetic, organized and independent Berry went from being the person who helped everyone else to an individual who needed assistance.

“I started struggling at work,” she said. “My once-perfect cursive became jumbled, and my desk was a sea of yellow Post-It notes. My once-spotless house was a mess. I received a final notice for my electric bill.”

While her diagnosis was devastating, it also allowed Berry to accept her circumstances and live her best life for as long as possible. “Changing how I felt about my diagnosis empowered me to find healthy ways to deal with it,” she said.

Berry concluded by asking attendees what they’re willing to do for the Alzheimer’s cause.

“Each of you in this room has the power to change the course of Alzheimer’s. As individuals living with Alzheimer’s and other dementias, we need your help. So tonight, my challenge to you is this: Ask yourself, ‘What can I do in the fight against Alzheimer’s? What can I contribute?'”

Thomas brought the evening’s festivities to a close by explaining what advocates need to do on Capitol Hill to help make Alzheimer’s disease a national priority — together.

“Together, we will share our stories. Stories about our families, about our friends and about lives lost to this disease,” he said. “Together, we will tell Congress that Alzheimer’s needs action — that it has to be a fight that we get behind, together, right now. And if they don’t get behind it, they will be left behind.”

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CNN’s Crowley shares personal story of her mother’s Alzheimer’s

The Alzheimer’s Association Advocacy Forum took place April 7-9 in Washington, D.C. Candy Crowley, CNN’s award-winning chief political correspondent, delivered the Forum’s keynote address to a packed house of nearly 900 dedicated Alzheimer’s advocates. Visit the Forum site for highlights and photos, and check out our new Advocates Center for ways you can get involved in the fight against Alzheimer’s.

April 8, 2014

Candy Crowley, CNN’s award-winning chief political correspondent, delivered the 2014 Alzheimer’s Association Advocacy Forum keynote address April 8 to a packed house of nearly 900 dedicated Alzheimer’s advocates, kicking off the general session.

Crowley admitted that she was somewhat hesitant about sharing the story of her mother’s battle with Alzheimer’s, even as late as the night prior to her remarks. “I’m very protective of my mother’s story and wasn’t sure about telling it,” she said. “But then I thought you’re a nice, safe group to tell it to.”

The tale is familiar to those in attendance. Crowley’s mother still recognizes her, but she also has moments where she thinks Crowley is no longer living. They have conversations, but they’re fleeting. Her mother is present but is also gone; the woman who Crowley said knew all the answers is now asking the questions.

“The ups and downs of this disease are astonishing to me and so tiring, as I know all of you know,” she said. “I miss my mother most when I’m sitting across from her. One day at lunch she was crying, and I said, ‘I’m not going to come see you if you cry all the time. Just tell me what I can do to fix it.’ She said, ‘I just don’t want to leave you.’ How do you respond to that? I said, ‘I don’t want you to leave me, but it’s OK. I’ll be fine.'”

Crowley related another anecdote about a potential sign that something was happening with her mother’s memory. On a trip to Europe, her mother, who served as the duo’s navigator, was studying a map; problem was, the map was upside down. Thinking back, Crowley wonders if she and her family failed to notice the signs of her mother’s dementia.

“All I ever do is question whether what I did in the past was right, whether what I’m doing now is right and what I will do in the future that will be helpful to her,” she said.

Crowley then offered advice to advocates on how to approach their Hill Day visits. Commenting on how two-thirds of Americans with Alzheimer’s are women, Crowley said, “Don’t hesitate to make this a women’s issue. You hear about the war against women, but there but for the grace of God is that congressperson with their mother, wife or daughter who could get the disease.”

Crowley closed her remarks by saying that personal stories can make the difference if legislators are hesitant to commit to the cause.

“You can have all the facts you want at your fingertips, but I would put all those facts and figures on a sheet and then tell them about the person you’re losing or have lost and what it’s doing to your life,” she said. “And then tell them what you want and what you need.

“Take your story to Capitol Hill and make legislators feel your hopes and fears. I encourage you to open yourself up as much as you can when you get there. And do not give up. You’re doing God’s work. I know that from the heart.”

Dr. Margaret Hamburg, FDA commissioner, then sat down for a Q&A with Harry Johns, Alzheimer’s Association president and CEO, to discuss a number of issues related to the relationship between the Association and the FDA, as well as the future of Alzheimer’s treatment and prevention. One area she mentioned as key is the engagement of the Alzheimer’s patient community and the broader caregiver population, in particular the willingness to be involved in clinical trials.

“People who participate in studies are really performing a service to humankind,” she said. “That’s how we get meaningful and enduring knowledge (about avenues to address).”

Rep. Paul Tonko (D-N.Y.) fired up the crowd with his emotional comments. Tonko is an original sponsor the recently introduced Alzheimer’s Accountability Act, which authorizes the National Institutes of Health (NIH) to submit a Professional Judgment Budget to Congress justifying funding for critical Alzheimer’s research.

“I’ve watched family members and friends walk this tough, tough walk and learned how painful their journey is,” Tonko said. “I’ve had people tell me at events that they’ve mourned twice — once when they determine what is going on and they see their loved ones lose their identities to the disease, and again when the people die.

“I commit to you every ounce of my intellect and energy to get the work done on behalf of the Alzheimer’s Association,” he continued. “For every dollar that we invest in care, less than a penny’s worth is going toward a cure. It has to be about both care and a cure. We need to do more. We will find a cure, and we will make it happen with intelligence and heart.”

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A lifeline for families coping with Alzheimer’s

More than 5 million Americans are living with Alzheimer’s or another dementia, and behind that frightening number are the individuals and families doing their best to manage this devastating disease. Your support helps to give them vital assistance — and hope for methods of treatment, prevention and, ultimately, a cure.
Take Lisa Warner, who knows too well that caring for someone with Alzheimer’s is emotionally and physically challenging, and often financially catastrophic.
Your donations help provide valuable care and support programs for families like the Warners. Please give today.

Lisa’s husband, Chuck, is a vibrant man in his mid-60s who excelled as a high-profile attorney. Out of the blue, Chuck began acting differently — making poor financial decisions, becoming short-tempered with staff and isolating himself from friends and family.
Chuck was diagnosed with Alzheimer’s in 2012. “The diagnosis took us by surprise and changed everything,” Lisa says.
They closed Chuck’s law practice, where Lisa worked as business manager, and with no income and rising expenses, had to sell their home. Lisa hopes to start a new business that will provide the resources and flexibility she needs to continue taking care of Chuck.
“I don’t know what we would have done without the Alzheimer’s Association,” Lisa explains. “I wanted to learn everything I could about this disease, and they helped me. The Association’s support groups have also been invaluable.”
With your help, the Association will remain a lifeline for thousands of people just like Lisa and Chuck.Please give as generously as you can.

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Senior Spotlight
Grandmother Inspired Nursing Home Program
After seeing the poor condition of her grandmother’s nursing home, Linda Holloway wanted to bring more joy to nursing home residents, as well as more understanding to young people. Click here to view article.

When Linda Holloway, 67, saw the poor conditions at the nursing home where her grandmother lived, she knew she had to do something for older people. When she sat down to think about it, she kept hearing a God-like command: “Bring together the young and old.”

That was the start of Bessie’s Hope, a nonprofit program that trains young people, particularly at-risk youth, to interact with nursing home and assisted living “elders,” as she calls them. This year, Bessie’s Hope, named for Holloway’s grandmother, celebrates 20 years of “transforming the lives of the too-often forgotten elders, the misdirected “at-risk” youth and all who participate in the volunteer programs.” Last year the group worked with 2,815 youth and 3,015 elders in the Denver area.

A certified music therapist, Holloway remembers the joy she saw when she and her friend Sharron Brandrup played music for the residents in her grandmother’s nursing home. That inspiration, combined with Brandrup’s experience working with youth, and a third friend, Marge Utne’s practical knowledge of grants, board structure and attorneys, led to the start of the program. It enlists students from preschool to high school in the Denver public schools, which incorporates Bessie’s Hope into its curriculum, as well as from youth residence programs.

What separates Bessie’s Hope from other group efforts, such as the Girl Scouts, that visit nursing homes is that Bessie’s Hope has built an ongoing relationship with schools and designed programs specifically for inter-generation participation. The staff trains teachers and students, even providing an orchestrated dialogue when the young people first approach their elders, whom Holloway refers to as their “grandpartners.”

Students are told to take their “grandpartner’s” hand and look in their eyes, introduce themselves and find out the elder’s name. Young people learn what to do if their grandpartner is unable to speak (due to Alzheimer’s, for example) and how to compliment the elder (anything from pretty eyes to nice shoes). The curriculum teaches young people to appropriately react to different situations. For instance, students are trained to respond calmly if the elder starts yelling or is confused and thinks the young person is someone else.

Every visit is organized with a planned activity, such as music, dancing or reading. Nothing is required except a living history project in which the young people interview the grandpartners, write an autobiographical sketch and then present it to the entire group. “Kids are so changed by the activity that they look forward to continuation,” Holloway says. At the same time, the elders are encouraged to interact with the students, sharing stories about a different era.

One of the emphases of Bessie’s Hope is working with at-risk teens from residential treatment centers. Holloway has found that the teens who are the most in need get the most out of working with older people. “It has become evident through the years that this work does for at-risk youth what nothing else can. They feel valued and needed and finally validated as human beings with purpose in this world,” states the website. Holloway cited one boy who grew up with violence and drugs. After spending time with nursing home residents, he became passionate about being with the elders. “It showed a new me,” he said, “someone kinder and more energetic.”

At the same time, the elders feel valued and needed, especially those who are lonely or feel hopeless. One nursing home resident, a former professional ballet dancer, had become reclusive, embarrassed because her lifestyle was so drastically altered from her glory days. Yet once the young people started interacting with her, she started talking, Holloway observed. They valued her for who she is now, rather than what she had been.

It is Holloway’s wish that places like Bessie’s Hope spread across the country. Yet the most interest she has in the intergenerational bridging of young and old is from Germany. When a German nursing home administrator did a comparative analysis of nursing homes in the United States and Germany, he was so impressed by Bessie’s Hope that he put together a book based on what he learned. The book caught the attention of German Chancellor Angela Merkl, and he received funding to set up intergenerational nursing home projects across his country.

“[Germans] respect their elders and consider them something that will strengthen the whole culture,” Holloway says. “At same time, people here [in the U.S.] don’t want to hear about elders. . . . Most [U.S.] kids see elders as something worn out, but elders have so much to offer.” She quotes one teenager who participated in Bessie’s Hope: “It’s so wonderful to talk to someone who has been there and done that.”

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