Aug 232016
 

This summer has been filled with positive advancements towards increased federal Alzheimer’s research funding in the House and the Senate for FY17. And, in August, Alzheimer’s champions received another reason to celebrate when the National Institutes of Health (NIH) recommended a $414 million increase in spending on Alzheimer’s disease research above NIH’s base appropriation for Fiscal Year 2018. Were this provided next year on top of what Congress is on track to provide this year, that increase would bring overall Alzheimer’s research at NIH to $1.8 billion per year, quadruple what it was just a few years ago.

This recommendation came during the National Alzheimer’s Project Act (NAPA) Advisory Council meeting when the second-ever professional judgment budget for Alzheimer’s research was released. To date, only two other diseases have received NIH professional judgment budgets: cancer and HIV/AIDS. This recommendation continues to lay the groundwork for the next step toward meeting the lead goal in the National Plan to Address Alzheimer’s Disease to prevent and effectively treat Alzheimer’s disease by 2025.2016-pjb-infographic-2-page-001

NIH laid out the research milestones it expects to meet if Congress provides the increase called for in this professional judgment budget, also called a bypass budget. These milestones include new insight into the disease mechanisms, identifying pharmacological and non-pharmacological ways to treat Alzheimer’s, creating more effective methods of research, and performing trials to enhance caregiving and support for caregivers, among many other areas of research. With steady, appropriate funding increases, the future is promising for Alzheimer’s research.

The announcement by NIH comes on the heels of the U.S. House and Senate appropriations committees approving increases that could be as high as $400 million for FY2017.

In issuing the FY2018 Alzheimer’s research bypass budget, NIH noted that Alzheimer’s disease represents a huge financial burden on taxpayers both nationally and individually. The Alzheimer’s Association 2016 Alzheimer’s Disease Facts and Figures report showed that Alzheimer’s and other dementia related care costs are expected to rise from $236 billion in 2016 to over $1 trillion in 2050 (in 2016 dollars).

The NIH decision and recent actions in Congress are the latest signs that the work of the Alzheimer’s Association, the Alzheimer’s Impact Movement, and our relentless advocates are being heard in Washington. Working together we will create a world without Alzheimer’s.

About the Author: Robert J. Egge is the Alzheimer’s Association’s Chief Public Policy Officer and also serves as the Executive Director of the Alzheimer’s Impact Movement

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Aug 232016
 

This is the final piece of a three part series on the need to act decisively to address the Alzheimer’s crisis. Part one reviewed the fiscal imperative to address the Alzheimer’s crisis, while part two addressed the research needs and opportunities.

THE PEOPLE’S IMPERATIVE

The public is increasingly aware of the need for action. A nationwide survey the Alzheimer’s Association fielded in 2015 found that voters view Alzheimer’s disease as a significant priority. The survey found:

  • 73 million voters have had a family member or close friend with Alzheimer’s disease.
  • More than one-third, or 52 million American voters, have provided care or personal assistance to a relative, friend or neighbor with Alzheimer’s.
  • 82 percent of voters nationwide are concerned about Alzheimer’s disease.
  • 87 percent of voters feel unprepared or only somewhat prepared to meet care needs of a family member who develops Alzheimer’s disease.
  • The majority, 64 percent, of voters would be more likely to vote for a presidential candidate who has pledged to support a major national research effort to fight Alzheimer’s.Alzheimers Grassroot Mailer Iowa

Millions of American voters have had personal experience with Alzheimer’s disease and understand the dramatic toll the disease takes on families across the country. It is unsurprising that presidential and congressional candidates on both sides of the aisle have been discussing the Alzheimer’s crisis while campaigning.

Constituents want Washington to address this mounting health crisis by advancing research and increasing support for caregivers. This year, Alzheimer’s Association advocates are pressing for a $400 million increase in Alzheimer’s research at the NIH in order to achieve the breakthroughs needed to develop preventions and effective treatments by 2025 — the goal established in the National Alzheimer’s Plan.

Issues important to constituents can be controversial, but urgently addressing Alzheimer’s is not. Prioritizing Alzheimer’s disease research funding is smart politics for a very important reason: Americans understand it is the only way to change the deadly and expensive trajectory that is bearing down on so many American families.

This challenge unites Washington, just like the country as a whole. It is time to act.

 

About the Author: Robert J. Egge is the Alzheimer’s Association’s Chief Public Policy Officer and also serves as the Executive Director of the Alzheimer’s Impact Movement

This post originally appeared on www.alzimpact.org.

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Aug 222016
 
Courtesy: NIH

This is part two of a three-part series on the need to act decisively to address the Alzheimer’s crisis. Part one reviewed the fiscal imperative to address the Alzheimer’s crisis, while part three reveals public opinion on the need for government to act.

The Research Imperative

The federal government has taken several important steps in recent years to address this looming crisis. The National Alzheimer’s Project Act (NAPA), passed unanimously by Congress in December 2010 and signed into law by President Barack Obama in January 2011, mandated a national strategic plan to address the crisis and coordinate Alzheimer’s disease efforts across the federal government. First released in 2012, the National Plan to Address Alzheimer’s Disease set a clear goal: “prevent and effectively treat Alzheimer’s disease by 2025.”

There’s only one way to meet the 2025 goal: research, research and more research.

Courtesy: NIH

Courtesy: NIH

Promising research is both underway and ready for the pipeline. During the past decade, researchers have significantly advanced our understanding of how a healthy brain works and what happens to the brain of a person living with Alzheimer’s disease. Many of the new drugs in development aim to modify the disease process itself by targeting those brain changes.

This is in part why prominent scientists believe the national plan is attainable if we accelerate funding. Encouragingly, Congress has begun to heed the message:

  • The omnibus spending bill for Fiscal Year 2015 included the Alzheimer’s Accountability Act, which requires the National Institutes of Health (NIH) to develop a professional judgment budget to execute the milestones established by NAPA. This will advise Congress on what NIH believes is needed to reach the goal of effectively treating and preventing Alzheimer’s disease by 2025. Only cancer and HIV/AIDS have been previously designated for this special budget development aimed at speeding discovery.
  • In December of 2015, Congress passed and the president signed an omnibus spending bill that included a $350 million increase for Alzheimer’s disease research at NIH. This is the largest annual increase ever in federal Alzheimer’s research funding — a nearly 60 percent increase that brings the total spending for research investigating Alzheimer’s disease and other dementias to nearly $1 billion per year.

Despite this progress, we must reach higher. In 2013, the Advisory Council on Alzheimer’s Research, Care and Services, which advises the Secretary of Health and Human Services, recommended investing at least $2 billion a year in research to meet the 2025 goal, as advised by scientists convened by NIH.

 

About the Author: Robert J. Egge is the Alzheimer’s Association’s Chief Public Policy Officer and also serves as the Executive Director of the Alzheimer’s Impact Movement

This post originally appeared on www.alzimpact.org.

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Aug 092016
 

This is part one of a three-part series on the need to act decisively to address the Alzheimer’s crisis. Part two addresses the research needs and opportunities. Part three reveals public opinion on the need for government to act.

In the three seconds it takes you to read this sentence, taxpayers will have spent more than $15,000 on Alzheimer’s disease and other dementias. Within the hour, the cost will reach $18.3 million.

Our nation’s entitlement programs are coming under increasing strain as the cost of Alzheimer’s and other dementias are poised to cost Medicare and Medicaid $160 billion this year alone. At this moment, more than five million people are living with the disease, and, without medical breakthroughs, by 2050 that statistic may be as high as 16 million people at a cost of $1.1 trillion per year to Medicare and Medicaid.

The baby-boom generation is on track to become Generation Alzheimer’s, as more than 28 million of them are expected to develop the disease.

Alzheimer’s, the most common cause of dementia, is a progressive brain disorder that damages and eventually destroys brain cells, leading to loss of memory, thinking capacity and other brain functions. Over time, those with the disease become entirely dependent on others for all activities of daily living. Those with severe or late stage Alzheimer’s eventually lose their ability to eat, bathe and manage their own bodily functions. It is a devastating disease for those living with it and for their families who watch their loved ones slip away. Ultimately, Alzheimer’s is always fatal. We cannot yet celebrate a single Alzheimer’s survivor.ALZ-18.3M-01

What’s more, there are no available therapies to address the underlying cause of Alzheimer’s, making it the only disease among the top 10 causes of death in the United States that cannot be prevented, cured or even slowed. With its soaring prevalence, lack of effective treatment and skyrocketing costs, Alzheimer’s disease is a crippling triple threat unlike any other disease.

In just a few decades Alzheimer’s has reached epidemic proportions, while the federal research funding necessary to better understand and eliminate the disease has been insufficient to meet scientific recommendations. A few months ago, however, Congress took an important step with the largest-ever federal funding increase for Alzheimer’s disease research, which now totals nearly $1 billion per year. While this is a promising step in the journey to end this epidemic, the nation’s top scientists and researchers have told Congress that research funding must be brought up to at least $2 billion per year — a level comparable to that for other major diseases — if Congress intends to make adequate progress against this disease in time to be relevant for most Baby Boomers.

The Fiscal Imperative

Already America’s most expensive disease with an estimated cost of care at $236 billion a year, excluding unpaid family caregiving, the cost to our nation will only continue to grow as our nation’s population ages.

  • Today, an estimated 5.4 million Americans have Alzheimer’s disease, including approximately 200,000 under the age of 65. One in nine people age 65 and older have Alzheimer’s, and one in three seniors dies with Alzheimer’s or another dementia.
  • Increasing age is the greatest risk factor for Alzheimer’s, and the U.S. population is aging. As baby boomers reach the age of greater risk of developing Alzheimer’s, it can be expected that — barring a treatment or breakthrough — millions of them will spend their retirement years either living with Alzheimer’s or caring for someone who has it.
  • And while the medical community is working hard to find treatments, today the five drugs approved by the U.S. Food and Drug Administration to treat Alzheimer’s only temporarily help memory and thinking problems in about half of the people who take them. The medications do not treat the underlying causes of Alzheimer’s.
  • Alzheimer’s makes treating patients with multiple diseases more expensive, and most individuals with Alzheimer’s typically suffer from more than one chronic condition. For example, a patient with diabetes and Alzheimer’s costs Medicare 81 percent more than a patient who only has diabetes, according to our analysis of Medicare claims data.

This is a disastrous formula for Medicare. Today, Medicare already spends one dollar of every five on care for beneficiaries with Alzheimer’s or another dementia. By 2050, that will increase to one dollar of every three. And, in 2050 Medicare spending just on people with Alzheimer’s disease will be almost as much as the total defense budget is today.

About the Author: Robert J. Egge is the Alzheimer’s Association’s Chief Public Policy Officer and also serves as the Executive Director of the Alzheimer’s Impact Movement

This post originally appeared on www.alzimpact.org.

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Mar 252016
 

Brenda Bouchard is certainly qualified to advocate on behalf of people affected by Alzheimer’s. The 58-year-old New Hampshire resident serves as a full-time caregiver for her mother with the disease, as well as for her husband, Ken, 69, who has younger-onset Alzheimer’s.

My husband was just 59 years old when our journey began.

bbouchardHe, like his grandfather, mother, seven aunts and uncles and two older brothers before him was diagnosed with Alzheimer’s disease. That was 10 years ago. My 89-year-old mother lives with us; four years ago, she was diagnosed with mild cognitive impairment. People with mild cognitive impairment have an increased risk of developing Alzheimer’s or another dementia, and that’s exactly what happened to my mother.

Alzheimer’s has devastated our family. What was once normal for our family is no more. We’re missing an important link. Our lives are forever changed. Throughout the Alzheimer’s journey, everyone walks his or her own path. Life is ever changing in ways we never could have imagined — and not for the better. Alzheimer’s is a disease of behavior. With each change in behavior, people with the disease and caregivers alike stand on shifting sand. The ground beneath our feet is never solid. It’s always moving.

The most difficult aspect of this experience is the loss of my husband and my mother.

Their bodies and spirits are here, but their minds have been altered and the precious gift that was their memory is gone. It’s a slow, agonizing loss and very, very difficult for them to cope with and extremely painful for us to watch.

In the early stage of the disease, it was very difficult to look at Ken and know he was a prisoner in his brain. He was aware of what was happening. He knew he was losing his mind and would continue to do so — he knew what was to come.  Through the middle stage, it was heartbreaking to be a helpless bystander as Ken lost his ability to drive and participate in all of the hobbies he loved so very much. He lost his independence. And then there was the sinking feeling as we stood by and watched him struggle to comprehend why he could no longer independently do so many of the things he loved, and there wasn’t a thing we could do to stop the march of Alzheimer’s or assuage the emotional pain he was enduring.

Ken is now in late stage. We’re very fortunate as Ken has great care and a lot of love surrounding him. He’s extremely happy in his new world, but I often wonder what the Ken of 10 years or more ago would think of his life today now that he can no longer take care of himself in any way. It’s heartbreaking to contemplate.

As I watched the grueling losses and changes this disease was wreaking on him and our family, I recognized I didn’t want to sit idly by and do nothing.

We were very private people, and when my husband was diagnosed, he wasn’t comfortable sharing his diagnosis. It was a very big decision to speak out publicly about Ken’s diagnosis because at the outset I felt I was betraying him. Initially, I didn’t realize that by speaking out, even in small ways, I was honoring Ken’s life and the person he was and also giving a voice to many people who are in the same situation and yet unable to speak out.

I never thought I would become an Alzheimer’s advocate, but out of all this loss and horror, I feel I’m joining voices with other advocates to make a difference. And we are making a difference. Every time we speak up and speak out, we’re changing the culture and climate around Alzheimer’s. We’re collectively making a difference in Washington by making them aware that we’re here and we’re not going to stop speaking up and speaking out until Alzheimer’s gets the attention it so greatly needs and deserves.


I started advocating when our local chapter of the Alzheimer’s Association asked me to come to our state capitol to testify on a bill that would put a plan in place for Alzheimer’s and related dementias in our state.

At that time, New Hampshire was one of only 13 states without a plan. I made three trips to Concord to testify on that bill over the course of a year-and-a-half. It was signed into law in August of 2014. It was an extremely satisfying experience to realize that by sharing our story I may have contributed to making a difference for people who are just starting their journey.

A local videographer made a short film about our journey titled “Honoring Ken.” Our film has been viewed more 30,000 times and has made its way around the world to England, Pakistan, Australia and beyond. I also started a YouTube channel and a Facebook page spotlighting our advocacy work and everyone else who has traveled or will travel this path.

This past summer, I met with one of our representatives and a representative from one of our senator’s offices in New Hampshire to discuss Alzheimer’s.

I’m very excited to attend the Advocacy Forum. Having done some advocacy work in my home state, I’m now anxious to advocate in Washington. I’m  looking forward to meeting with elected officials and sharing my story and the heartbreaking stories of so many people I’ve met. I’m also very excited to meet other advocates, hear their stories of advocacy, learn from them, share my personal lessons learned and continue to be inspired.

I believe I’ve been, and continue to be, one spoke in the wheel of Alzheimer’s advocacy. We’re all working together to be heard, make a difference and make change. I feel, sense and believe we’re doing just that.

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Sep 162015
 

Seattle Seahawks’ J.R. Sweezy is not the tough offensive guard most people know when he’s around his wife Gissell. “She’s everything I ever wanted. I became so much happier when she came into my life. She’s my support system,” he says, lowering his gaze shyly, petting their black Labrador Otis.

Gissell laughs, returning his smile. “There’s that soft side of him that people don’t see,” Gissell says. “I think everyone sees him as just a football player. Not me. That’s just what he does for a living.”

J.R. and Gissell met in sixth grade after she and her family moved to Mooresville, North Carolina. “We were in homeroom together,” said Gissell. “We would laugh and talk, and we became friends.”

Although Gissell wasn’t in the same popular crowd as J.R. in high school, they continued their friendship and attended senior prom together. “We dated and broke up three times from high school into college,” said Gissell. “I was done after the last one,” she said, as she shook her head laughing.

Gissell attended Peace College while J.R. attended NC State University to play football, following his paternal grandfather Roger’s footsteps. “It took time for me to grow up and realize how special she is,” said J.R.

They led separate lives for five years until running into each other at Duckworth’s Grill while visiting family. “We talked for a month after that and then were back together,” said Gissell. “I felt peace. When we’re together everything makes sense.”

J.R. nodded his head with assurance. “We make each other better.”seahawks

Soon after getting back together, J.R. was drafted and selected by the Seattle Seahawks.

“Football is something I’ve always loved, and I’m blessed enough to do it,” said J.R. “We’ve won a lot of games because of our fans, the 12s. It’s the only place like that in the entire NFL, and I’m lucky enough to call it home,” he said about Century Link Field.

“I love it. I get goose bumps just thinking about running out of that tunnel. The 12s are so loud; they’re great fans—they set the mood and keep us going.”

J.R. believes the 12s will also support him in raising awareness about Alzheimer’s disease. “They go above and beyond, and I think they’re doing that outside of football too.”

J.R.’s Papaw Gene, a successful businessman, was diagnosed with Alzheimer’s disease nine years ago. After seeing his maternal grandfather’s drastic decline last April, J.R. and Gissell decided to create #the12s Walk to End Alzheimer’s team to raise awareness nationally for Alzheimer’s disease.

“If we are raising money and have the right people researching and understanding it, maybe we will find a cure one day,” said J.R. “I want to raise awareness from coast to coast. We’re helping now for the future. It’s too late for Papaw Gene, but not for our kids.”

J.R. only gets to visit his papaw two or three times per year, but even now in the late stages of Alzheimer’s disease, Papaw Gene will sometimes ask, “Is that the boy that plays football?” and reach for his Seahawks hat.

Both of J.R.’s grandfathers were prominent role models in his life. His Grandpa Roger not only played football, but exemplified hard work and taught J.R. “not to doubt myself, to do what is right and to be my own man. He told me that ‘til the day he died,” said J.R.

They were successful men who led by example. “I’ve learned never to take a day for granted. God’s the only one who knows the in-story.” said J.R. “Just like in football, we can’t take a day for granted, because it could all end in one moment.”

Although J.R. was at the Seahawks’ hotel in La Jolla, California preparing for their third exhibition game on the afternoon of August 29, Gissell was at Seattle University Park with her mother-in-law, grandmother-in-law and other Seahawks’ wives and girlfriends representing #the12s team and raising awareness about Alzheimer’s disease.

“We’re soul mates living the dream,” said Gissell. “Every day he works to be a better man—in football and in our personal lives. I’ll do anything for him because he’s the love of my life.”

To read more blogs from the Alzheimer’s Association, Washington State Chapter, please visit this link.

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Sep 112015
 

Of the 5 million people in this country living with Alzheimer’s, about 200,000 have younger-onset/early-onset Alzheimer’s. It is not an “old person’s” disease. Some people are diagnosed in their 30s, 40s or 50s. One of them was my wife – my sweet Melinda.

Melinda is the reason I Walk to End Alzheimer’s.

Melinda was once a trial lawyer, a scratch baker, an excellent cook, needlepointer, crafter and seamstress. These talents, along with her incredible intellect, engaging smile, laughter and her love for her family made her a wonderful mother and wife.

bruce3

In 2010, Melinda was diagnosed with younger-onset Alzheimer’s at the age of 54. We were shocked and frightened.  For whatever reason – which I cannot explain but am thankful for – Melinda did not seem to dwell on her diagnosis. She remained cheerful in the face of the disease.

Melinda was in an adult day center four days per week between April and August of 2014 so that I could continue to work to support our family and retain our health insurance coverage. On September 2, 2014, I made the hardest decision of my life, determining that she needed to be placed in a long-term memory care facility.

Younger-onset Alzheimer’s is life-shattering. Younger families have children who see the progression of the disease, and therefore experience the ongoing loss of a parent. Breadwinners in the prime of their careers struck with the disease become unable to work, and if they haven’t worked long enough, they won’t be entitled to disability benefits. Families in the prime of their lives are destroyed by a disease that never takes a day off.

bruce2I Walk with the hope that other families will not have this fate.

The impact on our sons Matt and Ben is impossible to measure. Despite the loss of the mother they once knew, they adapted, rallying to help both her and I deal with the day-to-day challenges we faced.  Thankfully, this has not impacted their education. Matt graduated with the highest honors and found employment with a Big Four CPA firm.  Ben is succeeding at the School of Engineering at Mizzou.  I hope they are able to take away from this journey the love, patience and devotion I have tried to give to their mom and that their experiences will make them better people, as I know mine has made me a better husband, father and person.

I Walk in memory of Melinda.

My sweet Melinda passed away on January 14, 2015. I miss her terribly. I believe she is free from this insidious disease that shows no mercy, and that she is now at peace.

Since Melinda’s diagnosis in 2010, I have immersed myself in Alzheimer’s science and research, attending symposia featuring eminent scientists and physicians whose mission is to find the cause and, ultimately, the cure for this dreaded disease.

Melinda’s Memory Warriors Walk to raise money for research and a cure.

There is an oncoming avalanche facing our society. Of the top 10 causes of death in this country, only Alzheimer’s cannot be prevented, cured or slowed. The thought of losing one’s memory and ultimately one’s dignity is frightening. By participating in the Walk to End Alzheimer’s, we are letting the world know that now is the time to increase the awareness of a disease that will cost our government trillions of dollars in the coming decades if a bruce1treatment or cure is not found.

This is a real crisis for our nation and for the world as a whole. The avalanche is out there, and it will be here before we realize it. Join me today by lending your voice and your legs to the cause in the Walk to End Alzheimer’s – for me, my sweet Melinda, and all of those who live with this devastating disease.

 

About the Author:  Bruce Friedman Walks on team Melinda’s Memory Warriors. He was a featured speaker at the Alzheimer’s Association St. Louis Chapter’s 2015 annual “An Affair to Remember” gala fundraiser and was recently nominated for a position on the National Advisory Council on Alzheimer’s Research, Care and Services. Bruce was selected in 2014 as the Best Lawyers’ Lawyer of the Year in St. Louis in the area Family Law.

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Jun 262015
 

Tim, diagnosed with Frontotemporal dementia in 2012, living with HIV

Working in information technology and then for many years as a part of a management team, my career was very important to me. At the end of 2009, however, I realized that I was having trouble focusing on my job, and one day after a lunchtime walk, I felt like I had lost sight in one of my eyes. Thinking it was due to stress, I didn’t tell my partner Ron. I explained it away.

In early 2010, I took a work trip to Denver. During that week I had issues typing and communicating. When I met with my boss to discuss the trip, I had trouble speaking. That’s when I decided to see a doctor. “After talking to you, I think you need to go to ER right now,” he said.  I found out that I had had a stroke, and doctors suspected that several mini- strokes had also occurred, which accounted for my vision loss.timblog

Despite having some answers, I didn’t have them all. After returning to work a couple of months later, I was still struggling to do my job, which resulted in my being demoted. In January 2012, I was laid off. Due to all of the anxiety I was experiencing, I started seeing a therapist, who suggested that I make lists of coping strategies, but I never made the connection in my head to actually complete the tasks.

While in therapy, I was also undergoing testing and not sharing the results with Ron. I would come home and say “everything is fine” very nonchalantly. Ron knew everything wasn’t. “Either you are not communicating properly or you are just not telling me something,” he said. From then on Ron accompanied me to my appointments. We learned that the results of the testing indicated that there was a problem, but no conclusive diagnosis. Ron crusaded to find out what was really going on.  Eventually, in 2012, after many tests and much anxiety, I was diagnosed with Frontotemporal dementia (FTD), which is caused by progressive cell degeneration that affects the frontal and temporal lobes of the brain.  

Ron is my everything. He is my advocate, my only support, and my protector. If it wasn’t for him, I probably would not have received a diagnosis. I don’t even realize how many times a day he helps me make decisions. He’s good at subtly guiding me, as I can get very easily lost in a task. He is always looking out for my best interest. Because of FTD, I don’t have a perception of what repercussions exist due to my actions. I can’t even imagine what my life would be if I did not have him here.

Having been HIV positive for 25+ years, I treat the diagnosis of dementia like HIV; it doesn’t define who I am or what I can do. I don’t let the dual diagnosis control my life. I present myself first – work experience, life experience – and eventually my story unfolds. When I introduced myself to Congressman Cory Booker, I said, “Something you might not know about me is that I was diagnosed with dementia in 2012.” It was amazing how his constitution changed. “I wouldn’t have known,” he replied. It changed his whole perspective.

I tell people who I speak with on Peer-to-Peer Outreach Program calls that they have to look at their diagnosis as a new adventure. (Peer-to-Peer Outreach is a program of the Alzheimer’s Association that connects newly-diagnosed individuals with others living with Alzheimer’s and other dementias via telephone in order to share their experiences.) It’s a new challenge in your life. You will find different ways to accomplish tasks and you will find talents that you never had before. I never used to be able to speak in front of people. Because of my diagnosis, I can now give a speech. I still have challenges, I still have anxiety, but I have been able to do things I couldn’t do before as well.

As a care partner, Ron has a thankless job. I don’t always acknowledge what he does for me. Some doctors have suggested that the word dementia not be used in front of me and I appreciate that Ron is so honest with me about the diagnosis. Individuals living with dementia deserve to have advocates. You need someone who will go to battle for you. Ron does that for me.

I was losing direction and I needed to find a new outlet, so Ron encouraged me to get involved with the Alzheimer’s Association. Being an Early-Stage Advisory Group (ESAG) member has allowed me to let people know that their life is not over – that life is what you make of it. If I had a tagline like the women do on the Real Housewives reality shows, mine would be: “Get to know me first. I am more than my diagnosis.”

Ron, Tim’s care partner

I knew something was wrong long before Tim received a diagnosis. As his advocate, I helped coordinate his medical team and began making plans for the future. We went to an elder care lawyer (who was very helpful) and sold our home that we spent 10 years renovating .A lot of people wait too long to plan. The sooner you do that the better.

Dementia happened to Tim much earlier than it does for most. He was hoping to work up to 15 more years, build funds for retirement and travel. We moved from the suburbs to a 55+ community, and we live a very different life here. Tim and I have attended support groups through the Alzheimer’s Association, but I have also found support in our community by connecting with other caregivers. While other community members are older and their experiences more varied, their support is still valuable. Almost all of the people that are involved in support groups and services in the community are much older than us and it’s hard to relate to one another. Prepare yourself, because as a care partner, you have to realize it will only become even more intense.

You have to seek out advice. You have to be realistic. It won’t get any better. You have to take advantage of every moment together and celebrate what you have. Your relationship will change greatly. There are times when it’s difficult, and it’s usually little things that push you over the edge. You get by, but it’s very difficult. It is very hard to see your loved one diminish in front of you. I love Tim, but he isn’t who he used to be. As a care partner, you sometimes feel like you have the weight of the world on your shoulders.

It is a heavy journey and it is a process, but you do what you can do. It’s not all gloom and doom, but it has been difficult reflecting on the past three years. Neither of us have a career anymore. We had to sell our home and settle into a new place. Amongst all that, we were working on getting Tim’s diagnosis. I lost both of my parents and Tim’s brother and father passed away – we’ve had so much happen. But we don’t give up. You have to make the best of your situation. I want other care partners and caregivers to know that they shouldn’t give up their whole identity. You have to do things for yourself. Our situation is what it is. You have to try and take in every moment you have and hold on to what you can.

As a member of the Alzheimer’s Association 2014 National Early-Stage Advisory Group (ESAG), Tim Kaufman raises awareness of the financial impact of the disease and the value of an accurate and early diagnosis. He also addresses the needs of lesbian, gay, bisexual and transgender (LGBT) individuals living with dementia. Tim and his partner Ron live in Southampton, New Jersey.

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Jun 022015
 

My name is Grace, and I am 15 years old. For nearly 10 years of my life, my mother was a caregiver for her two aging parents. My grandmother was broken physically, but my grandfather Jim slowly deteriorated due to Alzheimer’s disease, passing in February of 2014. Watching my grandfather lose his identity was one of the hardest situations my family has ever had to cope with. I live with images of how this incurable disease changed him; dealing with the grief of his passing was not easy.grace2

Ever since my grandfather’s death, I have wanted to do something to raise awareness and funds to combat Alzheimer’s. My opportunity came this year in my English class.

For my 10th grade service project, I had to choose a charity or foundation to volunteer for. Naturally I chose the Alzheimer’s Association. I raised $200 and made phone calls to people who had started their Longest Day teams to encourage them in their activities. After that, I took the next step. I set up my own team for The Longest Day, where I committed to use my passion, swimming, as a tribute to my grandfather and all people who have lost their life to Alzheimer’s. On The Longest Day, I will swim 16 miles to “Swim for Jim” as a symbolic tribute to those caregivers who work from sunrise to sunset to care for their loved ones.

People recognized my passion right away and so many were excited to donate generously to the cause. I have nearly reached the three thousand dollar-mark on my Longest Day Web page, and I can’t thank my donors enough for their tremendous support!grace3

This opportunity to raise awareness and funds for Alzheimer’s is much more than a school project. It’s personal. It is a fight for those who have their memories and identity stolen from them. It is a call for others to support the caregivers, researchers and those who have fought this battle. It is a commitment to remember for people who no longer can. It is also a pledge to honor lost loved ones so their agonizing fight will not be in vain.

I hope you will join me on The Longest Day. I can wholeheartedly say that this experience became part of the healing process for me and my whole family. We now have a sense of closure. The donations given and awareness raised will be instrumental in decreasing the number of people who live the longest day every day. Cherish your memories – support the fight to end Alzheimer’s.grace1

About the Author: Grace Arredondo is from Charleston, South Carolina. She swims for her high school swimming team, the Shadowmoss Sharks summer league team and The City of Charleston’s Southern Marlins Racing Team. She has chosen to use her competitive swimming skills to honor her grandfather, Jim Whaley, by participating in The Longest Day. You can visit her team page here.

 

 

Jun 142014
 

father's day blog 2Father’s Day – or any day, for that matter – is not a typical day for Jason.

Jason is a teenage caregiver.

While many young adults of 18 are thinking about final exams and high school graduation parties, Jason Hatke’s mind is looking much further into the future. At age 46, Jason’s father Mike was diagnosed with younger-onset Alzheimer’s disease. Jason was only 13.

There were signs in the years before Jason’s father was diagnosed. In the 6th grade, Jason was in his school classroom viewing a video about Alzheimer’s with his fellow students. Jason immediately recognized the signs of Alzheimer’s shown in the video as behaviors his father had been displaying at home. He breached the topic with his mother Rita. Then, other issues began to surface. Mike’s boss noticed he had been experiencing trouble with his memory, especially in the afternoon hours after lunch. Soon Mike was seeing doctors to figure out what was going on.

Two years and many tests later, the truth was revealed.

Mike received a diagnosis of Alzheimer’s, and it changed the course of Jason’s life.

At 15, Jason became his father’s primary caregiver. Jason chose to step up to the plate, taking on the task of determining his father’s daily needs. With his mother working full-time more than 30 miles from their home, it became Jason’s responsibility to watch over his father. “It’s an everyday struggle,” Jason says. “There are days when my dad doesn’t know if he’s hungry or thirsty. It makes every day very real.”

As with all Alzheimer’s patients, scary situations arise and the reality of the situation is often raw and emotional. Jason manages to keep afloat while growing up a lot faster than his peers. “I feel like I am closer to 35 than 18,” he says. “Support from the Alzheimer’s Association and aid from other caregiver children coping with the disease has offered me a lot of comfort.” Jason has attended a ranch camp twice since his father was diagnosed. This is where he made new connections, supportive friends and where he met his girlfriend, whose father recently passed away with frontotemporal dementia.

Inspired by his father’s strength, Jason become an Alzheimer’s advocate. He has traveled to D.C. alongside his father to ask representatives to make Alzheimer’s a national priority and encourages other young adults to become involved in the fight. He’s learned to “make every single day count.”

Advocating is a passion that requires compassion, much like Jason’s caregiver role. “It is a blessing and a curse,” he says. “I’ve had to figure out who I am quickly, more quickly than my peers. I see the future more clearly, and I’ve learned the advantages of the family unit and how to not take it for granted. Where other people my age are rebelling and turning against their parents, I have learned how to appreciate mine.”

Although Jason feels a strong moral obligation to remain in Indiana to support his dad, he recently enlisted to join the Navy. That isn’t to say that he doesn’t worry about his decision. He does. He worries about the “what ifs.” What might happen when he returns? What if his father doesn’t recognize him?

Like Jason, many caregivers and family members of people diagnosed with Alzheimer’s experiefathers day blog 1nce feelings of guilt. But Jason’s family is encouraging him in his decision and is committed to him pursuing his passions. His father insists that he won’t “weigh Jason down” by insisting that he stay in Indiana. Until Jason leaves for the Navy, he continues to live every day as it comes, taking to heart the many life lessons he is learning from his father — particularly his attitude toward Alzheimer’s. “He decided to step up and fight this disease. He advocates for progress and change and shares his voice on Capitol Hill. I respect my dad so much because of that,” Jason said.

Jason’s work as an advocate is a calling that he plans to continue to pursue beyond his years as a teenage caregiver, because he knows the difference he can make. “Imagine if my situation was your situation. Imagine how helpless you might feel, and how it would make you feel to lose your memory. My family and I advocate for change on the federal level and in our community to change the future for other families. I fight because my dad fights. I fight for those who can’t. Go big or go home.”

About Jason: Jason is sharing his story during Alzheimer’s & Brain Awareness Month in hopes that he can inspire others to get involved with the cause. He currently serves as an Ambassador for the Alzheimer’s Association, recently attending the Alzheimer’s Association Advocacy Forum for the third time. He is also working on launching a dementia website of his own.

Learn More:

Become an Advocate
Take Action: Tell Elected Officials to Invest in Alzheimer’s Research
Alzheimer’s & Brain Awareness Month

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