Alzheimer’s advocates share their stories at Advocacy Forum

Linda Fisher is making her voice heard at the Advocacy Forum in Washington, April 7-9. As a Greater Missouri Chapter ambassador, she has a personal story to share-her husband lost his battle to Alzheimer’s disease in 2005. Over the past fifteen years, Fisher has served as a caregiver, support group leader, Walk chair, board member, ambassador and has advocated at the state and national level. “I have a passion to increase funding for research,” she said. “It’s time to end Alzheimer’s.”

 Fisher, a Sedalia resident, is just one member of the outstanding delegation representing the Greater Missouri Chapter at this year’s Advocacy Forum. She’ll be joined by her sister, Roberta Fischer of Cole Camp, Betty T. Johnson of Springfield, and Marcia Rauwerdwink of Nixa.

For the past 15 years, Roberta Fischer has been a member of her sister’s walk team at the Sedalia Walk to End Alzheimer’s. “She got involved with the Walk while she was a part-time caregiver for my husband,” said Linda. “And now she leads my team’s fundraising efforts. I would be lost without her.” In addition to participating in district visits with her legislators, this will be Fischer’s third trip to the Forum.

Betty T. Johnson serves as a Chapter ambassador to Senator Roy Blunt and this is her first trip to the Forum. She became involved with the Chapter several years ago when her husband David was diagnosed with younger-onset Alzheimer’s disease. He lost his battle at the age 68, but Johnson is committed to changing the course of this disease. She is a wonderful spokesperson for our Chapter and was featured on a video with her late husband at a Gala fundraiser in Springfield.

As a member of the Public Policy Committee, Marcia Rauwerdink is a passionate advocate for our Mission. She witnessed her Mother battle Alzheimer’s disease and knows the devastating effect is has on a family. Rauwerdink has been an ambassador to Congressman Billy Long since the inception of the Ambassador Program three years ago. She was successful in securing Congressman Long as a co-sponsor for the HOPE Act. He is the only legislator from Missouri, and one of the first Republicans, who has signed the bill. This will be her third year attending the Advocacy Forum.

They will join the more than 800 people with the disease, caregivers and fellow advocates from across the nation to appeal to their members of Congress for action on Alzheimer’s disease. While on Capitol Hill, advocates will share their personal stories with legislators and request that adequate research funding be allocated for Alzheimer’s disease.  

This year’s Forum comes on the heels of an unprecedented $122 million in additional Alzheimer’s funding, the largest-ever increase for Alzheimer’s research and care programs, in the FY14 budget. The Alzheimer’s Association and its advocates look forward to working with Congress again this year to ensure Alzheimer’s funding continues to build toward the necessary levels to achieve the goal of the National Plan to Address Alzheimer’s Disease - preventing and effectively treating Alzheimer’s by 2025.

According to the Alzheimer’s Association 2014 Alzheimer’s Disease Facts and Figures report, over 5 million Americans are living with Alzheimer’s disease and that number is poised to grow to as many as 16 million by 2050. In 2013, 15.5 million friends and family members endured the significant emotional, physical and financial challenges of caregiving for their loved ones with Alzheimer’s or another dementia.

In addition to the human toll of the disease, care for Alzheimer’s, the country’s most expensive condition, costs the nation $214 billion annually with projections to reach $1.2 trillion by 2050.

For more about the Alzheimer’s Association Advocacy Forum, visit www.alz.org/forum.

The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. 

Share Your Story…

We know that early and accurate diagnosis leads to better outcomes and higher quality of life for people with Alzheimer’s and their families. Yet, the federal government has said there is insufficient evidence that a diagnostic test called ‘brain amyloid imaging’ improves health outcomes. 

Thankfully the decision is not yet final. Make your voice heard if you have had firsthand experience with dementia diagnosis and care, for yourself or a loved one. If you and your family experienced challenges in obtaining a diagnosis, or if an accurate diagnosis has allowed you and your family to better plan and manage the disease, please share your experience.

Your story could make a big difference in the future of how Alzheimer’s disease is diagnosed and treated. We can’t afford to postpone important tools that are ready to help doctors provide better Alzheimer’s care today.

Please, share your story and forward this message along to others who might be able to help. 

Half of the more than 5 million Americans with Alzheimer’s have never received a formal diagnosis. Help us make a change today! Thank you!

Caregiver Tip: Summer Safety

Summer is almost here and as the weather warms up, families increase their activity both indoors and out. If you are a family facing Alzheimer’s disease or dementia, you don’t have to stop participating in meaningful summer activities — but you should plan ahead to ensure safety and enjoyment for everyone. 

Take these steps to help you prepare:

·  Create a plan to meet your needs. Families who are unsure of potential safety issues should visit the Alzheimer’s Association Alzheimer’s Navigator™; an interactive online tool that asks a series of questions in order to deliver a customized action plan and links to information, support and local rescources.

·  Evaluate your environment. Identify possible areas of danger in the home or outdoors that could cause injury to the person living with the disease.

·  Reduce the risk of wandering. Anyone who has memory problems is at risk for wandering. Even in the early stage of dementia, a person can become disoriented in a familiar place. Enroll the person with dementia in MedicAlert® + Alzheimer’s Association Safe Return®, a 24-hour nationwide emergency response service for individuals with Alzheimer’s or a related dementia who wander or have a medical emergency.

·  Learn more. To learn more about these services, visit our safety center.

"Advocates are like avocados" David Hyde Pierce

For 25 years, Alzheimer’s advocates have lifted their voices for millions of Americans in Washington, D.C., at the Alzheimer’s Association Advocacy Forum and helped achieve real policy change. The 2013 Forum’s opening session, Winning the Fight: Celebrating 25 Years of Alzheimer’s Advocacy, paid tribute to the past while rallying attendees to continue the momentum.

Actor, Alzheimer’s Champion and longtime advocate David Hyde Pierce, honorary chair of the 2013 Forum, welcomed attendees, receiving a standing ovation when introduced. He set a memorably appetizing tone.

"I love the word ‘advocate’ because the Spanish word for ‘advocate’ is ‘abogado,’ and ‘abogado’ sounds like ‘avocado,’" Pierce said. "Avocados are like Alzheimer’s advocates — because they are irresistible and they have big nuts."

Once the laughter and applause died down, he added, “If you’re going to come to Washington in the middle of sequestration and ask for funding, you better have both.”

Pierce gave attendees a brief history of the Association and the creation of the Advocacy Forum and wished Association founder Jerry Stone a happy 100th birthday. “My notes say that Jerry can’t be with us today, but that is flatly untrue,” he said. “Jerry has been with us every day since the first day, and he will be walking with you every moment that you’re here. Frankly, it will take every one of us to fill his giant shoes. He is the Big Avocado.”

Pierce introduced Steve McConnell, who opened the Alzheimer’s Association Public Policy division in 1989 and is currently director of U.S. programs for Atlantic Philanthropies. McConnell took a walk down memory lane, reminiscing about the first Forum 25 years ago.

"We did it on a shoestring budget," he said. "We had 125 people here and it went on for four days. People were exhausted, but they were energized. We realized that (the Forum) was here to stay."

McConnell noted that at the time, there was no understanding of the national and international implications of Alzheimer’s disease. The change in perception about the disease and the increase in research funding over the years, he said, is a direct result of the hard work and dedication Alzheimer’s advocates bring to the cause.

"Your presence here is so important to validate the decision makers who can bring about change and to convince them to step up to this issue," McConnell said. "You will be remembered, and you will make a difference. In 25 years, the world will be very different. With your many voices and one message, you will have tamed Alzheimer’s disease, and hopefully it will be a thing you can only read about in history books."

The annual Roll Call of the States followed, with representatives from all 50 states and the District of Columbia — ranging from people with Alzheimer’s to Association employees to volunteers — delivering accomplishments from the past year with humor, civic pride and a few mentions of local sports teams’ achievements. Advocacy successes included, but were not limited to, implementation of state Alzheimer’s disease plans, Silver Alert legislation, advocacy recruitment at Walk to End Alzheimer’s®, dementia training for law enforcement, town hall meetings and the creation of a law that allows employees to use sick days to care for an individual with Alzheimer’s.

As part of the Roll Call, Maryland state senator and Alzheimer’s Association National Board member Verna Jones-Rodwell, attending her first Advocacy Forum, spoke poignantly about her experience with the disease. Both of her parents had Alzheimer’s; Jones-Rodwell uses them as an inspiration to serve others and is grateful for Alzheimer’s advocates.

"The work I do (as a state senator) is not a vocation, it’s an avocation. It’s who I am," she said. "I thank you for being persistent, for educating us, for going the extra step…if you don’t do it, who else is going to do it, right? This is bigger than all of us, but together, it will not conquer any more of us any longer than it has to."

Rob Egge, Alzheimer’s Association vice president of public policy, set the stage for what’s ahead. Commenting that there’s never been a more important year to have a room full of ready advocates, Egge noted the Obama administration has shown its commitment to the cause but that Congress needs to “get in the game.”

Quoting the late Margaret Thatcher, who died with dementia, Egge said, “First you win the debate, then you win the vote. We have been working at this debate. Now we’re going to win the vote together. I feel extremely optimistic. We’ve never had a more compelling case.”

Alzheimer’s Association Ambassador and member of the Association’s Early-Stage Advisory Group Myriam Marquez shared her story about being diagnosed in 2009. A public defender at the time, Marquez said she initially felt despair after learning of her illness, but the “warrior” in her took over; now she devotes her life to fighting the disease that has impacted it. With four children and seven grandchildren, she, like all Forum attendees, wants to do everything she can to find a cure.

"You’re in this room because you want to create change," she said. "You can make the difference. Your passion, experience and training will help us toward a cure for this disease. Thank you for joining me in the fight."

Pierce concluded the session by urging advocates to tell lawmakers that “we’re going to do everything we can” to win that fight. “Now it is time for our representatives to represent,” he said. “Avocados, let’s roll!”

Karen Henley of Westbury, N.Y., is ready to roll. Her husband was diagnosed with Alzheimer’s at the agonizingly early age of 36. He passed away last year at 47, but Henley, who was her husband’s in-home caregiver for the duration of his illness, continues to advocate.

"When you’re a caregiver, you feel like things are out of your control," said Henley, a five-time Forum attendee. "Coming to the Forum helps me feel empowered. It gives me strength. It makes me feel like I can make a difference. By telling our story and giving a face to the disease, it’s not just something these representatives see on paper. It makes it human."

            http://www.alz.org/forum/news-winning-the-fight.asp

A New Hope

Dementia is the second largest contributor to death among older Americans, with one in every three seniors dying with Alzheimer’s or another dementia. And despite reliable diagnostic tests, evidence shows over half of those with Alzheimer’s do not know they have the disease. 

Facing these harsh realities, it is crucial that those battling Alzheimer’s have access to diagnosis and care planning services which can lead to better outcomes for themselves, their families and their caregivers.

Today our efforts to improve diagnosis, care planning, and medical record documentation move forward with the reintroduction of the Health Outcomes, Planning and Education (HOPE) for Alzheimer’s Act. This legislation is one of the Alzheimer’s Association’s most important legislative priorities in the 113th Congress.

In the last session of Congress, the HOPE For Alzheimer’s Act garnered 173 co-sponsors and wide, bipartisan support in both the House and Senate. We need your help to build and maintain bipartisan support for passage of this critical legislation!!

Please ask your members of Congress to become a cosponsor of the HOPE for Alzheimer’s Act in the 113th Congress. 

Learn More About the HOPE for Alzheimer’s Act

The HOPE for Alzheimer’s Act focuses on three key areas by:

·  Creating a package of services aimed at a formal and documented diagnosis

·  Ensuring that comprehensive care planning services are provided after a diagnosis to Medicare beneficiaries and their caregivers

·  Requiring documentation of a diagnosis and any care planning services in the beneficiary’s medical record 

The HOPE for Alzheimer’s Act is also consistent the recommendations of the first-ever National Plan to Address Alzheimer’s Disease, which was released in 2012 by:

·  Ensuring an accurate and timely diagnosis of Alzheimer’s disease

·  Educating and supporting individuals with Alzheimer’s disease and their families upon diagnosis

·  Enhancing assistance for people with Alzheimer’s disease and their caregivers to prepare for care needs

Please ask your Members of Congress to cosponsor the HOPE for Alzheimer’s Act !

             Reprinted from the Alzheimer’s Association - www.alz.org

Winning Never Gets Old

You’re invited to watch the new PBS documentary Age of Champions for free April 18th – 28th at ageofchampions.org/premiere.

Age of Champions tells the story of five competitors who sprint, leap, and swim for gold at the National Senior Olympics. You’ll meet a 100-year-old tennis champion, 86-year-old pole vaulter, and rough-and-tumble basketball grandmothers as they triumph over the limitations of age.

This opportunity is brought to you by the Alzheimer’s Association event, The Longest Day®, along with the filmmakers of Age of Champions. We hope that you, your colleagues, friends and family will be able to use this resource as a positive and entertaining tool for promoting a healthy and active lifestyle.

After being inspired by the film, register to join us on June 21, 2013, for The Longest Day, as together we honor those living with Alzheimer’s disease and their caregivers.  The Longest Day is about patience, strength and endurance – but it’s also about a challenge. For people living with Alzheimer’s disease, this challenge is every day.

On The Longest Day, do something you love – or try something new – to advance our cause.

Organize a team for this sunrise-to-sunset event and raise funds and awareness for Alzheimer’s care, support and research. We hope to have lots of different team activities here in Central Missouri. Learn more at alz.org/thelongestday.

Know Your Opponent

If you have a loved one or know someone living with Alzheimer’s disease, we recommend reading Still Alice by Lisa Genova. Even though it is a fictional account of her main character’s struggles with Alzheimer’s disease, it provides a better understanding of how this disease impacts the patient and her family. It will forever change the way you interact with someone living with dementia.

 

Another great book is The 36-Hour Day by Nancy L. Mace, M.A. and Peter V. Rabins, M.D., M.P.H. “Over the past twenty-five years, this best-selling book has become the ‘bible’ for families caring for people with Alzheimer’s disease, offering comfort and support to millions worldwide.”

 

A few years ago we offered a Caregiver Conference featuring former coach Frank Broyles. He urged the caregivers in attendance to learn as much as they can about the disease and be prepared for the battle. “I approached Alzheimer’s disease much like I would an opponent on the field, with a solid game plan and a dedicated team.” 

 

His book, Coach Broyles’ Playbook for Alzheimer’s Caregivers is a practical guide with caregiving tips for each of the three stages - Early, Middle and Late. In his introduction, he writes, “My best advice to you is to treasure each day and live it to the fullest. Cherish the time you spend together and perhaps most important, love each other. I hope you find peace in knowing that is is still possible to live and love when someone you love is living with Alzheimer’s disease.”

 

We agree with Coach Broyles and recommend you KNOW YOUR OPPONENT. Just a reminder that we have these and many other books and videos available to purchase or check-out from our Reference Library, 2400 Bluff Creek Drive, Columbia, Missouri.

 

We also offer care consultations and educational opportunities for both caregivers and persons living with Alzheimer’s. For more information, you can call 1.800.272.3900 or vist our website at www.alz.org/mid-missouri.

 

Caregiver Tip: Ideas to Make Bathing More Pleasant

If you are caring for a loved one with dementia, bathing can sometimes be a challenge.  Whether a shower, tub or sponge bath is preferred, warmth and safety are important considerations. 

 

As the disease progresses, you might want to place a sturdy plastic chair in the shower stall so your loved one feels more secure sitting. The chair needs to have holes in the seat for drainage and a folded towel to sit on, not only for comfort, but to keep them from slipping.     

 

Water spraying on their back while seated can be more comfortable and less frightening than on the front of their body. You can place the chair so their back is facing the shower nozzle. During the bathing process, be sure to explain what you are doing, step by step.

 

To help control the flow of water, it is helpful to use a shower wand with a wash cloth fastened by a rubber band over the shower head. This can make the experience much more pleasant since it will prevent the water from beating down on sensitive skin. 

 

Be sure to have all of your supplies (soap / shampoo / towels) readily available so you don’t have to leave your loved one alone in the shower.  Also make sure bathroom rugs are not a tripping hazard. Your goal is to make the bathing process as easy and comfortable as possible for both of you!

 

If you are caring for a loved one with Alzheimer’s disease or related dementia and would like more information, please call our 24-hour Helpline 1.800.272.3900, or visit our website: www.alz.org/mid-missouri

 

 

                                      Pam Richmond

                                      Family Services Coordinator

                                      Alzheimer’s Association Greater Missouri Chapter

Early Stage Interactive Workshop

Beginning Monday April 1, 2013, an interactive workshop series for persons with early stage memory loss will take place in the Alzheimer’s Association Education Center in Columbia, MO. Individuals with early stage Alzheimer’s disease will have the opportunity to learn about Alzheimer’s disease and memory loss; how to tell others about the diagnosis; gain valuable coping skills, daily strategies and safety tips; and will have an opportunity to socialize with peers. 

The workshops begins on Monday and will run five consecutive Mondays from 10am-Noon. The last workshop takes place April 29. 

There is no fee to attend, but registration is required for all classes. Call 573.443.8665

The Alzheimer’s Association Education Center is located in the lower level of our office at 2400 Bluff Creek Dr., Columbia, MO 65201

For more information regarding the workshops, click here!

Alzheimer’s Association 2013 Facts and Figures

The Alzheimer’s Association 2013 Alzheimer’s Disease Facts and Figures report reveals that 1 in 3 seniors dies with Alzheimer’s or another dementia. This is a startling number and one that should make us all sit up and take notice.

The report also states that between 2000 and 2010, there has been a 68 percent increase in the number of deaths for people with Alzheimer’s disease, which means that more and more people are being diagnosed everyday, and there is no current cure.

In 2013, an estimated 450,000 people will die after developing the disease. But it just doesn’t affect those who are diagnosed. It also affects families, many of whom dedicate their time and money as caregivers for their loved ones.

Based on these facts and figures, I hope you agree that we all need to take action. Here are a few ways you can help: 1. Start/join a team and raise money for our Walk to End Alzheimer’s. 2.  Become an Alzheimer’s advocate 3. Sign up for Trial Match. I urge you to visit our web site at www.alz.org/mid-missouri to read the 2013 report and learn more about how you can join us in our fight to end Alzheimer’s. Thank you!

—- Linda Newkirk, Executive Director – Greater Missouri Chapter

Upcoming Events

April 27, 2013 – Forget Me Not Ball

May 4, 2013 - Boonslick Chordbusters Spring Concert (more information pending)

May 30, 2013 – KOMU 8 presents The Roast of Don Laird