Tag Archives: End Alz

Country Music Icon Glen Campbell Moved to Alzheimer’s Facility

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It was announced earlier this week that country music star Glen Campbell, 78, has been moved into an Alzheimer’s facility. In a statement they gave to Rolling Stone, Campbell’s family said,“Sadly, Glen’s condition has progressed enough that we were no longer able to keep him at home. He is getting fantastic care and we get to see him every day. Our family wants to thank everyone for their continued prayers, love and support.”

The Rhinestone Cowboy was diagnosed with Alzheimer’s in 2011, but he continued to perform despite his diagnosis. Campbell set out on a global farewell tour and released two new LPs– 2011’s Ghost on the Canvas and 2013’s See You There. Though he was already beginning to forget his song lyrics and sometimes made mistakes during performances, Campbell was able to keep performing with the help of his family. Three of his children, including his youngest daughter Ashley who is 25, joined their father’s backup band for the tour. Talented musicians themselves, their main purpose for going on tour with their father was to care for him as the disease progressed. Campbell would often begin playing a song he had just finished playing during the performance, but his children were there to remind him of it. He would then joke about his forgetfulness on stage and move on like nothing had happened. Campbell’s daughter Ashley told CBS Sunday Morning that she and her brothers were there to help their father when he got lost. Plus, they didn’t want anyone to think his memory loss was caused by anything other than Alzheimer’s. 

“I feel a little protective of him, you know,” she said. “I just want to make sure if he needs anything from me, I’m there and I’m paying attention.”

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In that same interview, Ashley told CBS Sunday Morning that she missed the man her father was, but was still very proud when she watched him perform during his Goodbye Tour.

Instead of giving up after hearing his diagnosis, Glen Campbell continued to do what he loved for as long as he was able to. He and his family didn’t hide his diagnosis from the public either. They were open from the beginning. Even when Campbell began forgetting that he was ever diagnosed with Alzheimer’s, his wife wasn’t afraid to speak out.

Campbell’s Goodbye Tour ended early due to the progression of his disease, but the Alzheimer’s Association and other advocacy groups are saying that what he and his family have done despite the disease is unprecedented and inspirational. On May 17, 2012, he performed at an Alzheimer’s event at the Library of Congress.

 

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12 Things you should know about Alzheimer’s…

imagesThere has been no avoiding the frightening facts and figures behind Alzheimer’s while I have been working on my master’s project, which focuses on the disease and the implications it has on family caregivers. It’s this closeness with the subject and the background information that causes me to forget that not everyone shares this interest with me. Not everyone knows how many people die each year from Alzheimer’s (500,000), or that 1 in 3 seniors dies with this disease. Not everyone knows what it is like to have a family member who has Alzheimer’s, but as the numbers rise, it’s likely that they will one day.

I realize that it’s not that people don’t care, although one caregiver I spoke with said that most people don’t care about something until it affects them or someone close to them. I think people just don’t realize the implications this disease has for everyone. I read an article from the Huffington Post this week that lists 12 things you might not know about Alzheimer’s. I’m going to summarize it below, but feel free to go read the article yourself here.

  1. “Alzheimer’s is a fiscal nightmare.” 
  2. “Rates will quadruple.” Experts say that in the next 35 years, the number of those who will develop Alzheimer’s will quadruple. The article says, “If you’re over 65, you stand a one-in-eight chance of getting the disease. Once you pass 85, your odds jump (or fall) to nearly one-in-two.”
  3. “Alzheimer’s is the third deadliest disease in the U.S.” I’ve seen different reports on this number, but either way it’s in the top ten, and if we can do something to change that number, we need to be doing it.
  4. “Alzheimer’s is endlessly destructive.” The article reminds us that Alzheimer’s does much more than steal a person’s memory. There are other destructive symptoms that develop as the disease progresses. In fact, there are seven stages, often ending with the person losing their ability to control movement.
  5. “There may be many kinds of Alzheimer’s.” Alzheimer’s might be similar to cancer in that there might be many different types, which makes finding a cure even more difficult. The article says, “When John Wayne had cancer, it was called “the cancer.” Now there are dozens of kinds of cancer.”
  6. You can be a “dementia friend.” Some countries are starting programs that train citizens who have jobs that require them to work directly with customers to understand the disease so they can better serve those who have it. This might help clear up the stigmas that follow Alzheimer’s.
  7. “High-tech solutions are coming.” The article says that dementia friendly technology is being developed. The homes of those who have this disease might one day contain technology that allows them to live somewhat more independently than they can today.
  8. “There is even progress on Diagnosis.”
  9. “Big data” may uncover solutions and help solve some of these issues.”
  10. “New Care Models for the 21st Century.” We are learning new ways to train family caregivers so that they are better equipped to take care of their loved one at home. This could mean fewer Alzheimer’s patients in nursing homes, and even less of an expense on the family.
  11. “Prevention Before Cure.” Since we haven’t found a cure yet, some say we should be focused on prevention in the meantime. Diet and exercise can decrease a person’s chances of developing the disease.
  12. “An unexpected advocacy push.” I wrote a post a few weeks about Seth Rogen and his charity for Alzheimer’s. I wrote another post a few days later about former North Carolina basketball coach Dean Smith, who has Alzheimer’s. This celebrity advocacy and open conversation about Alzheimer’s is exactly what the Huffington Post article is talking about, and in my opinion, is coming at just the right time. It’s the reason this disease is getting so much attention right now.  

 

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ESPN and Alzheimer’s- The perfect combination to raise awareness

Maybe it’s just me, but it seems like there have been more articles about Alzheimer’s research and awareness in the past few months than ever before. Maybe it’s always been in the headlines or maybe it’s just that I notice any headline that mentions the disease now because I am so focused on my project, which is about Alzheimer’s care. Either way, I’ve read quite a few interesting articles about research and awareness of the disease this year.

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The most recent article that I read about the disease was on ESPN. com, where you might least expect to find it. Entitled “Precious Memories,” the article is an in-depth profile of former North Carolina basketball coach Dean Smith, who held a record number of wins when he retired in 1997. He led an extremely successful career, but today, Smith has Alzheimer’s, and his family fears he doesn’t remember any of it. The man who always seemed to have the sharpest memory in the family might not even know who he is.

The article is beautifully written and very well done. It tugs on your heart as you read the extremely personal story, but it also gives the important facts and statistics of the disease at the same time. With more than 5 million people living with the disease, the Smith family’s experience isn’t uncommon. What makes it such an important story, however, is that it is about a prominent sports figure, which means that it will more than likely reach a much more diverse group of people than most other articles about Alzheimer’s can hope to do. Just as Seth Rogen is trying to raise awareness among young people, this article makes Alzheimer’s a topic of conversation for sports fans. Educating more people about this disease is an important step in raising funding for research.

According to an article in USA Today, the National Institutes of Health spends less money on Alzheimer’s research than it does on HIV/AIDS, even though the number of Americans with Alzheimer’s is far greater. It is one of the most underfunded diseases, yet one of the most expensive.

Why do Alzheimer’s research organizations have such a hard time raising awareness and funding for this disease that still doesn’t have a cure? Well, there are a number of reasons, one of them being the idea that it is someone else’s problem until it directly affects you or your family. Another reason is the stigma that follows Alzheimer’s, and it has been very difficult to shake. Dr. Stan Goldberg, Professor Emeritus at San Francisco State University, says that there is a need for acceptance before awareness will hold any value.

“I would guess that before breast cancer funding dramatically increased, it was proceeded by a changed view society—and men in particular—had of women with breast cancer. I think before research funding for Alzheimer’s can substantially increase, society needs to see the person with Alzheimer’s as someone who lives with a dreadful illness, rather than someone who is the illness, with all of the stereotypes that our culture attaches to it.”

It’s going to take more people like Dean Smith’s family sharing their personal stories for people to begin to understand the affects this disease can have. I hope that reading their story will help others to find confidence in sharing their own. For those that haven’t been personally affected by Alzheimer’s, I believe hearing these stories will help them to truly realize the importance of finding a cure.

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Seth Rogen on Capitol Hill last week…

I’m sure you heard about actor Seth Rogen‘s hilarious and heartfelt speech about Alzheimer’s that he gave last Wednesday before the Senate. Rogen talked about his family’s personal experience with the disease, hoping to raise awareness and inspire others to speak up about their experiences.

Sprinkled with self-deprecating jokes, Rogen’s speech was both funny and serious at the same time. He said he was there for a few reasons, the first being that he is a huge fan of House of Cards. His second more serious reason was that Alzheimer’s care is expensive, and that caregivers need more financial support.

“Therefore, I can’t begin to imagine how people with more limited incomes are dealing with this,” Rogen said. “As you’ve also heard, studies show that Alzheimer’s and related dementia is the most costly condition in the United States. Yes, it’s more costly than heart disease in a country where, for $1.29, you can get a taco made out of Doritos. They’re delicious but they’re not healthy. While deaths from other major diseases, like heart disease, HIV and strokes continue to decline, deaths from Alzheimer’s have increased almost 70 percent in the last 15 years. Over five million Americans have Alzheimer’s and at this rate, in 35 years, as many as 16 million will have the disease.”

Rogen also wanted to use his speech to make those who are affected by this disease feel less alone.

“The third reason I’m here, simply, is to show people that they’re not alone,” Rogen said. “So few people share their personal story, so few people have something to relate to. I know that if me and my wife saw someone like me talking about this, it would probably make us feel a little less alone. Americans whisper the word ‘Alzheimer’s’ because their government whispers the word ‘Alzheimer’s,’ and although a whisper is better than silence that the Alzheimer’s community has been facing for decades, it’s still not enough. It needs to be yelled and screamed to the point that it finally gets the attention and the funding that it deserves and needs.”

I thought his speech was great. Rogen’s foundation ‘Hilarity for Charity‘ is all about getting young people involved, and that is exactly what is needed. We have to become more aware of this disease and its implications in order for anything to change.

Even if you aren’t a Rogen fan or interested in raising awareness for Alzheimer’s, I’m sure you saw this story in your newsfeed or heard about it from a friend. I can’t imagine how anyone could miss the incredible buzz it created on the internet. It’s not uncommon for celebrities to testify in front of the Senate, and Rogen’s status isn’t the reason his speech made headlines. What happened after the speech is what has everyone talking, or should I say, tweeting.

Annoyed that he spoke to a practically empty room, Rogen tweeted the following:

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When Senator Mark Kirk tweeted a thank you to the actor, Rogen fired back, making it known that Kirk wasn’t even present to hear his speech.

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While I doubt this was the buzz Rogen expected to gain, he and others involved with his charity foundation can be proud that they were able to make Alzheimer’s a topic of conversation last week.

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Caring for Alzheimer’s

imagesMost master’s programs require students to write a thesis paper, but the program I am enrolled in, the Community Journalism program at the University of Alabama, is somewhat different. The ComJ program, as we call it, requires us to identify “a fundamental community problem and then conceptualized an innovative online approach to addressing that problem.”

I struggled to choose the community problem I would focus on at first. I wanted it to be something that I cared about, and I wanted it to be something I thought might actually help someone. To complicate matters even more, I wanted it to be something that nobody else had done before, at least not in the ComJ program. (To see some of the past projects, click here, here, or here.)

After much thought and research, I chose to focus my project on Alzheimer’s disease and dementia. Instead of creating a website that discusses the disease itself, however, I am focusing on those who care for a loved one who has it.

According to the Alzheimer’s Association website, more than 5 million Americans are living with Alzheimer’s. It is a disease that worsens over time, stealing a person’s memory, identity, and eventually their ability to control movement. However, the person who has the disease is not the only one it will affect. The website also states that 15.4 million family members and friends of patients with Alzheimer’s provided 17.5 billion hours of unpaid care in 2011. Unpaid caregivers provided eighty percent of Alzheimer’s care. The men and women who act as caregivers are often forgotten when this disease takes its final toll. They are the ones who deal with the daily stresses and worries of caring for the person. They are the ones who feel helpless as they watch their loved one slip into a world they cannot reach. 

I read an article on Forbes.com that reassured me that the focus of my project is important. It included an interesting quote from Meryl Comer, co-founder of Women Against Alzheimer’s and president of the Geoffrey Beene Foundation Alzheimer’s Initiative. Comer said the following about the experience of a caregiver:

 “The caregiver is the keeper of the secret. It’s critically important for women to step forward and be honest about what it takes to care for a loved one with this disease. Caregivers are often too exhausted to be advocates—or concerned with preserving the dignity of their loved ones. It’s time for a ‘coming out’ party just like the HIV/AIDs and Breast Cancer advocates stepped out.”

I don’t know that I would call it a party, but I do think it’s time for caregivers to start speaking out about their experiences. Not only will it help them to connect with other caregivers for support, but it can also raise a new kind of awareness for the disease by showing that it impacts more than just those diagnosed. As with many other diseases, I believe it is an experience that is difficult to relate to until you or a loved one is diagnosed. I say this because I speak from experience. This project is personal to me because my grandmother has Alzheimer’s. It has been painful to see this disease progress, and just as painful to see the affects it has had on my family.

I’m in the process of finding caregivers who are willing to tell their story in short videos that will be featured on the website. If you or someone you know is a caregiver, or if you are just interested in my project, please leave a comment. I would love to hear from you.

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You Can Always Start Again

Last week, I found inspiration in a place I least expected to discover it. Words of wisdom were shared with me in a time I most certainly needed to hear them, and I couldn’t help but feel as if they might help someone else.

I am currently working on a multimedia project focused on caregivers of those with Alzheimer’s for my master’s program. I will write more on the subject later, but to summarize for now, I will be telling the story of the day-to-day life of someone who cares for a family member with the disease. My plan is to follow multiple caregivers so that I can show this experience, while at the same time, create a community for them to feel connected to others who are like them.

I have been visiting Caring Days, an adult day care center in Tuscaloosa, in order to build relationships with the caregivers who bring their loved ones there. Clients participate in activities and exercises that help build and retain their cognitive and motor skills. On Friday, I was invited to sit in on an art therapy session with a group of University of Alabama Honors students who attend the sessions once a week for a class called Art to Life. (If you are interested in Art to Life or Cognitive Dynamics, please watch the video below.)

I watched as 95-year-old Mrs. Sarah, who used to paint before the disease stole her ability to do so, painted again. I listened as she recalled memories that she hadn’t visited in years. I had no idea that something so inspiring could come from something as simple as a cake pan filled with shaving creme and food coloring.

After filling the pan with shaving creme, the art therapist asked Mrs. Sarah to pour drops of food coloring over it. The talkative and outgoing woman asked one of the students to help her with the food coloring, a small sign that she was still hesitant. She repeatedly expressed that she missed being able to create art, and although she was very confident in the art therapist, she wasn’t confident in herself as an artist anymore. She was afraid that the skills she once possessed were gone. She feared she had lost them completely, just like many of the memories she longed to remember.

While one student poured the food coloring over the shaving creme, the others asked Mrs. Sarah to talk about her earliest childhood memories, her wedding day and her family. She was excited to share these experiences with the students, and would recall things she said she hadn’t spoken about in years. With each story she told, however, Mrs. Sarah would come to a point that she couldn’t remember, and would become frustrated with herself when she couldn’t bring the memory back or remember the words to say when it did. I watched as this very intelligent woman, who led a life well lived, began feeling insignificant and “not smart enough” to remember.

Mrs. Sarah was then asked to take a paint brush and drag it across the shaving creme, creating swirls and patterns of different colors. She wasn’t certain of herself, but kept “painting” at the encouragement of the others.

The next step in the process required Mrs. Sarah to take a piece of paper and lightly press it into the shaving creme. “Am I messing up? I hope I didn’t ruin it,” she said. When the paper was pressed to the bottom of the pan, the therapist gently pulled it back and scraped away the shaving creme with the edge of piece of cardboard. When the shaving creme was cleared away, the therapist revealed the finished product and asked the students to describe what they saw.

Happiness

“Happiness”

A dove. A flower. A butterfly. A party. These were the things the students saw in the abstract, and as they described them, tears filled her eyes. You see, there is something else you should know about Mrs. Sarah. Besides losing memories and mobility, Mrs. Sarah is losing her sight. She sees shapes, colors and outlines, but no detail. Yet, here she was crying because she had created something beautiful for others to see. That’s what art is after all, she said.

When the therapist asked her to name the piece, Mrs. Sarah said, “Happiness.” When the therapist asked her to describe how it made her feel, Mrs. Sarah said, “Like there is something there and you can start again.”

You can start again. How beautiful it was to hear those words from a woman who probably believed she would never get the chance to start again. She apologized for being emotional, but what she couldn’t see were the tears in everyone’s eyes. We all needed to hear that, and I’m sure we will need to be reminded of it again someday. At 95, Mrs. Sarah realized that she could start over, despite her age and her sickness. No matter what you are going through or what life throws your way, tomorrow is a new day, and you can always start again. 

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