The millennial generation raises its voice to fight Alzheimer’s

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Young advocates aged 18 to 35 gathered for a networking session during the Advocacy Forum. More than 40 advocates from the millennial generation greeted familiar faces, made new acquaintances and discussed best practices for recruiting their peers in the fight against Alzheimer’s disease.
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April 22, 2013

On Monday, April 22, young advocates aged 18 to 35 gathered for a networking session during the 25th annual Alzheimer’s Association Advocacy Forum. More than 40 attendees, mostly from the millennial generation, greeted familiar faces, made new acquaintances and discussed best practices for recruiting their peers in the fight against Alzheimer’s disease.

John Funderburk, Alzheimer’s Association director of advocacy, welcomed advocates by sharing a presentation filled with statistics and facts on the millennials.

“I hope you know that the millennial generation is bigger than the baby boomers,” he said. “And these issues that we discuss the baby boomers facing, namely Alzheimer’s — they will be your issues, too, unless we do something to change it.”

Funderburk emphasized the size — and the power — behind this generation when they decide to support a cause.

“You are a generation that started Twitter, Facebook and Instagram. You elected our president to two terms,” he said. “You are an educated, influential, diverse generation. You are the present.”

The session continued with an open dialogue about the challenges and opportunities of being a young Alzheimer’s advocate. Jeff Last, Alzheimer’s associate director of federal affairs, gave attendees an insider perspective, sharing his experiences “on the other side” of Capitol Hill as a former policy advisor.

“Know your facts and figures,” Last advised. “Share the statistics along with your story. Be confident in what you have to say.”

He urged advocates not to be disappointed if they meet with staff representatives rather than elected officials.

“Every office works differently,” he said. “Stick to your story. Meeting with a staff person is not necessarily bad. That person may be the one to hear your message.”

Last was joined by Colman Elridge, vice president of the Young Democrats of America, executive assistant to Kentucky Governor Steven Beshear and a passionate Alzheimer’s advocate. His grandmother was diagnosed with Alzheimer’s when he was 11 years old.

“Being an advocate is about my grandmother. She was the first superhero I ever met,” Elridge said. “She was born at the time when she didn’t have the right to vote because she was African-American and a woman.”

For Elridge, who lost his father at a young age, losing his grandmother to Alzheimer’s disease was all the more painful.

“One day I walked into her room and she sat straight up and started crying. She said, ‘They told me you were gone.’ It hit me that she didn’t see me, she saw my father. I thought, ‘This woman has been to hell and back. If she needs me to be my father, I will be my father.’ It wasn’t easy, but it didn’t make me anything other than a loyal grandson.”

Elridge urged advocates to use the power of the millennial generation to bring about Alzheimer’s policy change.

“As a generation, we get a bum rap. I often say we are a microwave generation — we’re used to getting what we want. We’re spoiled. If ever there was a moment that we could use being spoiled to our advantage, it’s this issue. We tell our stories with the expectation that something will happen.”

Attendees asked questions and exchanged anecdotes, many connecting over their concerns about not being taken seriously due their age.

Rebecca Kmett, an advocate from Iowa, shared her approach to this problem. “If I go into a meeting [with an elected official] and he or she says, ‘Gosh, you’re young,’ I say, ‘My grandparent developed the disease. If I’m unlucky, next it will be my parents. If I’m really, really unlucky, then it will be me. And if I am really, really, really unlucky, it could be my children, who are 3 and 5.’

“It’s a good way to drive home a point. This is a disease that affects many generations.”

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Senate Aging Committee hears testimony on National Alzheimer’s Plan

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Ashley Campbell, daughter of legendary musician Glen Campbell, who has Alzheimer’s disease, was among those who testified before the Senate Aging Committee on April 24. The committee hosted the hearing to discuss an update on the nation’s first-ever National Plan to Address Alzheimer’s Disease.
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April 24, 2013

Advocates at the 25th annual Alzheimer’s Association Advocacy Forum paused during a day of visits with members of Congress to attend a Senate Special Committee on Aging hearing on the National Plan to Address Alzheimer’s Disease.

The National Plan, released in May 2012, is the country’s first comprehensive approach to the Alzheimer’s epidemic and includes a goal to prevent and effectively treat Alzheimer’s disease by 2025.The hearing, “Are We on Track for 2025?,” examined the plan one year after its creation and the resources needed to accomplish its goals. It featured testimonies from expert witnesses, including Ashley Campbell, who spoke on behalf of her father, country music legend Glen Campbell. Glen was diagnosed with Alzheimer’s disease in 2011.

Senate Aging Committee Ranking Member Senator Susan Collins (R-Maine) welcomed a room filled with advocates, sharing her personal experience with Alzheimer’s and her concerns about the disease’s estimated trajectory.

“As someone whose family has experienced the pain of Alzheimer’s time and time again, I know there is no more helpless feeling then to watch the progression of this devastating disease,” Collins said. “An estimated 5.2 million Americans have Alzheimer’s, more than double the number in 1980. Based on the current trajectory, more than 16 million Americans over the age of 65 will have Alzheimer’s disease by the year 2050.”

Collins also outlined her vision for the National Alzheimer’s Plan.

“If we fail to change the current trajectory of Alzheimer’s disease, our country will face not only a mounting national health care crisis, but an economic one as well,” she said. “The National Alzheimer’s Plan, which will be updated annually, will help us to focus our efforts and accelerate our progress toward better treatments, a means of prevention and ultimately, even a cure.”

Senator Bill Nelson (D-Fla.), chairman of the committee, shared his thoughts on the Alzheimer’s epidemic and his appreciation for advocates’ efforts on Capitol Hill.

“It is shocking that today 1 in 3 seniors will die with Alzheimer’s,” said Nelson. “And as the baby boomers age, this fact is going to confront us all the more. We are very grateful for your tireless efforts on behalf of this issue and for the Alzheimer’s Association.”

Ashley Campbell was the first to testify, re-accounting Glen’s diagnosis and their decision to launch a Glen Campbell goodbye tour, giving her father a chance to connect with family, friends and fans through music.

“Dad thought it was important for people to know you can keep doing what you love — that life doesn’t end right away when you get Alzheimer’s,” she said. “It was also so important for my dad to take action and help spread the word about the need to find a cure for Alzheimer’s.”

An emotional Ashley shared her fears for the future – fears that resonated with many advocates in attendance – while issuing a plea to the Committee.

“Alzheimer’s is a disease that robs people of their lives while they are still living and it robs families of the people they love while they’re still standing right in front of their eyes,” she said. “It’s hard to come to the realization that, someday, my dad might look at me and I am going to be absolutely nothing to him. We need to find a cure for this because we’re not the only family affected. So much pain should not exist in the world.”

Next, Dr. Donald Mould, acting assistant secretary for planning and evaluation in the Office of the Secretary of the Department of Health and Human Services, shared his testimony, outlining progress under the plan in research and care. Mould specifically mentioned the Alzheimer’s Disease Research Summit 2012, a meeting that united Alzheimer’s researchers and advocacy groups; and a new training provided to more than 10,000 doctors, nurses and direct care workers to help them better recognize the symptoms of Alzheimer’s. He also spoke to the future of the plan and the anticipated updates, expected to be released in May of this year.

“We are finalizing the 2013 update to the national plan, which will add additional steps we will take to beat this disease,” he said. “The President’s FY2014 budget includes a $100 million initiative to fight this [disease] through expanded research, improved supports for caregivers and enhanced provider education and public awareness.”

Dr. Ronald Petersen, director of the Mayo Alzheimer’s Disease Research Center and chair of the Advisory Council on Alzheimer’s Research, Care and Services, was the next to testify. As a representative of the council, he shared recommendations from the group, citing a need for increased research funding, a compressed therapeutic pipeline and enhanced caregiver support, among other ideas. Peterson ended his remarks with a strong call to action.

“[The council] believes that it will be possible to treat and ultimately prevent Alzheimer’s disease and the 2025 goal set forth in the Plan is ambitious but realistic,” Petersen said. “However, the current pace of research and recommendations for improvement in care in Alzheimer’s disease need to be accelerated.”

Final witness testimony came from Dr. Michael Hurd of the RAND Corporation, who spoke about the results of a study he and his colleagues conducted with a grant from the National Institute on Aging. The study, focusing on the economic burden of Alzheimer’s to our country, was published in the April 4 issue of the New England Journal of Medicine. In response to a question from the committee, Hurd compared the costs associated with Alzheimer’s to those of heart disease and cancer.

“The defining aspect of the cost associated with Alzheimer’s and dementia is that it is age related. Roughly speaking, the prevalence doubles every five years beginning among people in their 70s, and as the baby boom generation reaches those advanced old ages, then we see a very large increase in prevalence and therefore cost,” he said. “I would not think that those same trends would compare to cancer and heart [disease], where the age prevalence is not nearly so strong or so striking.”

Testimony from these expert witnesses evoked further discussion and questions from the senators on the committee. Witnesses fielded inquiries on a wide variety of topics, including needed levels of funding, costs to families and access to insurance.

To close the hearing, which was somber and sometimes emotional, Senator Collins made a comment on her wardrobe that resonated with the advocates in the room.

“I’ve worn this purple suit for many years on the annual day the Alzheimer’s advocates come to town,” she said, referencing her own attire. “I fear I am going to have to keep it around for many, many more years, and I’d like for us to get a cure so I can retire it once and for all.”

Benjamin Smith, an Alzheimer’s advocate from Maine, took a break from a successful day of Hill visits to attend the hearing.

“The information on research particularly resonated with me. For a lot of people, it’s important to talk about the latest research and where that’s going, especially the specifics,” he said. “It’s wonderful to see our country’s senators on the same page that we are.”

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Advocates convene for 25th anniversary Advocacy Forum

Hundreds of dedicated Alzheimer’s advocates gathered in our nation’s capital this week for the 25th annual Alzheimer’s Association Advocacy Forum. They learned, shared and directly appealed to their elected officials for meaningful action on Alzheimer’s issues.
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Hundreds of dedicated Alzheimer’s advocates are in Washington, D.C., for the 25th annual Alzheimer’s Association Advocacy Forum, where they’ll learn, share and directly appeal to their elected officials for meaningful action on Alzheimer’s disease issues. At this gathering, we’ll celebrate the rich history of our efforts to push Alzheimer’s into the political spotlight, and the movement we’ve created to work toward our future goals.

Check this page throughout the Forum for on-the-scene highlights and images, as we raise our collective VOICE to pay tribute to millions of family members and friends affected by Alzheimer’s — and to help create real policy change.

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NIH’s Collins delivers positive news about Alzheimer’s research funding

http://www.alz.org/forum/news-collins.asp?WT.mc_id=enews2013_04_24

At the Alzheimer’s Association Advocacy Forum in Washington, D.C., keynote speaker Dr. Francis Collins, director of the National Institutes of Health (NIH), announced — in what he termed a unique step — that he has dedicated $40 million from his fiscal year 2013 director’s budget for Alzheimer’s research.
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April 24, 2013

Alzheimer’s Association Advocacy Forum keynote speaker Dr. Francis Collins, director of the National Institutes of Health (NIH), provided attendees at Tuesday’s General Session with a dose of good news for Alzheimer’s research during a time when optimism about financial resources may be in short supply.

Collins announced — in what he termed a unique step— that he has designated $40 million from his fiscal year 2013 director’s budget for Alzheimer’s research by scientists who recently submitted applications at the request of the National Institute on Aging.

In addition, Collins pointed out that President Barack Obama’s FY14 budget would add $80 million for Alzheimer’s research “over and above what’s being supported for any other condition, again reflecting the way this administration prioritizes this disease.”

“I so wish it could be more,” he said. “But I hope you hear in this kind of a commitment the way in which we at NIH see this as an opportunity and a responsibility. We also hope that moving forward we can put medical research back on the stable track that is needed in order to support the research and the researchers.”

Despite the budget uncertainty, Collins spelled out a number of current developments related to Alzheimer’s research. These include the recently announced Brain Research through Advancing Innovative Neurotechnologies (BRAIN) mapping project; the Alzheimer’s Disease Neuroimaging Initiative (ADNI); the discovery of 10 new genetic variants; animal models, such as a new rat model featuring both plaques and tangles; more than a dozen Alzheimer’s clinical trials under way; and the repurposing of drugs not originally meant to treat the disease.

“The sense that we have in the research community of accelerated momentum in Alzheimer’s research is palpable,” Collins said. “It would be fair to say that 8 to 10 years ago, people were feeling a little frustrated, a little discouraged — it seemed as if progress was really slow. Now, researchers in this field are energized because of a variety of new things that have come along, many of them in just the last couple of years, that give us a sense that we’re finally beginning to get a real handle on what causes this disease and what to do about it.”

Collins closed his remarks by conveying the sense of hope that he and the NIH feel about the future of Alzheimer’s research.

“I’m reminded of a quote that I’m fond of because it applies to medical research,” he said. “It’s from Peter Levi: ‘Hope in every sphere of life is a privilege that attaches to action. No action, no hope.’ We at NIH, we’re all about action. The Alzheimer’s Association is about action; that’s why you’re here. Together, I believe we can do great things.”

Barrick Wilson, of Wichita, Kan., saw his wife diagnosed with Alzheimer’s in 2008 at age 64 and took early retirement to serve as her caregiver before placing her in a care facility this year. He was pleased to hear Collins talk about the potential of, and progress in, Alzheimer’s research.

“I’m very enthusiastic about it,” he said. “I took away a good, positive message that things are headed in the right direction.” Bill McInturff, co-founder and partner, Public Opinion Strategies, worked with the Alzheimer’s Association to develop messages that resonate not only with Congress but also the public. He spoke about using personal connections to Alzheimer’s and the impact the disease to drive support of the cause.

When speaking to legislators about Alzheimer’s, “Establish an emotional connection by explaining the human cost on the (person with Alzheimer’s) and the family,” he said. “The messages need to educate people about the prevalence of this debilitating disease that has no treatment or cure.”

McInturff added that while emotional messages work because it helps personalize the issue, there has to be a cost attached to the messages in order to sway legislators who deal with numerous appeals. One statistic he cited said, “In the last 30 minutes, Alzheimer’s has cost the United States over $11 million, and 26 more people have developed the disease.”

“As one (Hill staffer) said to us in a focus group, ‘I was having lunch, and during that lunch 26 people heard really bad news,'” he said. “This is a powerful way to remind people of the cost of inaction.”

A lead sponsor of the original Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act and who Alzheimer’s Association President and CEO Harry Johns introduced as “a true champion” of the cause, Sen. Debbie Stabenow (D-Mich.) spoke with passion about her dedication to fighting Alzheimer’s and her admiration for advocates on the frontlines.

“This is a powerful, powerful movement, and it wouldn’t be happening without all of you,” she said. “We are so fortunate to have so many advocates. We are in a fight not just to make sure that people who are diagnosed and their caregivers have support today — which is absolutely critical — this is about finding a cure. This is about hope for the future.”

Convincing her fellow legislators to increase, not slash, money for Alzheimer’s research is crucial — ‘We should not be talking about cutting research funding, it makes absolutely no sense,” Stabenow said — but it’s not the only message lawmakers need to hear. Stabenow wants advocates to encourage sponsorship of the HOPE for Alzheimer’s Act.

“Ask every single senator you meet with, as well as House members, why they’re not a co-sponsor if they’re not,” she said. “We need 100 percent sponsorship of that bill…If they say they support it, the next question is, ‘Will you be a co-sponsor?’ That’s how you show support.”

Stabenow echoed the sentiment that advocates sharing personal stories can help sway senators and representatives to show that support.

“The time to win, the time to act, is now,” she said. “Keep spreading your message. Keep sharing your stories. There is nothing more powerful than your personal story. Step by step, we will find a cure. I’m very proud to be working with you along the way.”

During the lunch program, Stuart Rothenberg, a nonpartisan reporter and columnist, shared his views on the current political landscape and how it affects asking legislators to back a cause.

“It’s like a football game — two yards and a cloud of dust,” he said. “The way things are in this town, it’s difficult to even get two yards. Money’s tight, folks are angry, members (of Congress) are defensive, and there are a lot of groups coming to town who want to do good and who deserve support. All you can do is make your case in as personal, effective way as possible.”

Among other issues, Rothenberg discussed a “right direction, wrong track” poll in which respondents are asked, “Is the country headed in the right direction or off on the wrong track?” The question doesn’t address specific policy matters. The most recent results: 31 percent right direction, 61 percent wrong track. He suggested advocates could use such numbers to their advantage.

“When you go up to the Hill, you’re going to find members who understand there is dissatisfaction,” he said. “Members are sensitive to opinion. You can have a very personal impact.”

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April – Financial Literacy Month

Being financially sound is important to everyone, but the diagnosis of Alzheimer’s disease can make planning for the future more crucial than ever. During the month of April, the Alzheimer’s Association is encouraging those caring for others affected by the disease to take advantage of the educational resources relating to financial matters developed to assist them in decision making. Please take a moment to share this multi-faceted article with your employees which highlights an e-learning course, a brochure and helpful information from our website’s Caregiver Center. These tools are all designed to aid them in the financial planning associated with Alzheimer’s disease and dementia care.

Please plan ahead to promote these initiatives.

May – Caregiving and the working mother

As we prepare to celebrate Mother’s Day, take a moment to remember that 62 percent of all care givers for those with Alzheimer’s disease or a related dementia are women. A recent poll from National Alliance for Caregiving found that nearly one-third of caregivers had children under the age of 18 living with them, creating the ‘Sandwich Generation’ a generation of caregivers who are caring for their aging parents while supporting their own children. These caregivers often face a unique set of daily decisions, causing higher levels of stress. While all caregivers have been found to experience more overall stress – competing priorities have severe consequences on a woman’s financial, emotional and physical health. Learn more about other statistics affecting the average female caregiver and tools provided to assist the working caregiver in your midst by sharing this article with your employees.

June – National Safety Month

In June, while getting ready for increased outdoor activities, safety is a crucial topic for those affected by Alzheimer’s disease. During National Safety Month, it is a time to remind families to create or update a comprehensive safety plan to have peace of mind. You can help by sharing Alzheimer’s-related safety tips with your employees to help make their home a safer place for a person living with Alzheimer’s.

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