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I feel compelled to share with you some appalling facts regarding how little money goes toward Alzheimer’s disease research.  While the United States spends $200 billion annually on costs related to Alzheimer’s, less than 1 percent of this actually ends up furthering the cause of studying it.

The information for this article was passed on to me from Jeff Anderson, a representative of Alzheimers.net, which is a community and informational resource for Alzheimer’s patients and their caregivers.

Read on to find out how we as caregivers can make a difference:

 

Alzheimer’s Research Spending vs. Annual Care Costs

Alzheimer’s disease affects more than 5 million Americans. It’s the fifth leading cause of death in the United States overall, and care costs for Alzheimer’s patients exceed $200 billion. But somehow the government hasn’t made research into this disease a top priority. 

Alzheimer’s Facts

In a year’s time, Alzheimer’s affects more people than cancer, heart disease and AIDS combined. As the infographic shows, only heart disease, the country’s number one cause of death, tops it in terms of annual care costs. (Heart disease costs are $264 billion; Alzheimer’s are $203 billion.)

Alzheimer’s falls not only among the top 10 causes of death in the country, but it’s the fifth leading cause of death for people aged 65 and over. In fact, one in every three seniors dies with Alzheimer’s or another form of dementia.

Over the next decade, cases of Alzheimer’s are projected to increase by 40 percent, barring a medical breakthrough. Yet the U.S. government spends less than one percent of its budget on Alzheimer’s research.

If research dollars remain unavailable, Alzheimer’s will affect nearly 14 million seniors by the year 2050, nearly triple the number of people it affects today.

Alzheimer's Research Spending VS Annual Care Cost

Alzheimer’s Compared to Other Major Diseases

Death Rates From Alzheimer’s On the Rise

Between 2000 and 2010, death rates from Alzheimer’s disease increased 68 percent, as the infographic illustrates. However, deaths from other major diseases (cancer, heart disease and AIDS) decreased during that time.

Unfortunately, Alzheimer’s is unique in that it has no cure and no way to slow its progression.

Government Costs for Alzheimer’s

Nearly 30 percent of people with Alzheimer’s and other forms of dementia are on Medicare and Medicaid, compared to 11 percent of people not suffering from these diseases. Per-person Medicare costs for Alzheimer’s and dementia patients are triple that of people without Alzheimer’s. Per-person Medicaid costs are 19 times higher.

It’s clear that research into treatment and prevention could help lower costs for the country. That’s just speaking in financial terms.

Alzheimer’s Caregiver Costs

Family caregivers often give their time for no pay. In 2012, over 15 million caregivers provided more than 17 billion hours of care for no money. Those caregiving hours were valued at $216 billion.

And caregivers often suffer ill health as a result of their caregiving duties. According to the Caregiver Action Network, stress associated with caring for a person with dementia increases a caregiver’s chances of developing a chronic illness. They don’t go to the doctor when they should, tend to have poor eating habits and exercise less than they did before becoming caregivers.

Investing More in Alzheimer’s Research

Alzheimer’s is mysterious. We don’t know what causes it, and we can’t stop it. Some suggest that if it doesn’t affect a family, the family assumes it’s not their problem.

But a recent article in USA Today explains why this isn’t true. Those high Medicare and Medicaid costs affect anyone who pays federal taxes. If that isn’t enough, the statistics indicate that this disease will soon touch a far greater number of families in the near future.

Advocacy and involvement with the Alzheimer’s Association and similar groups can help lead to achievements in research. Until members of congress make Alzheimer’s a priority, however, chances are strong that the costs to the nation will continue to soar.

Making phone calls, writing letters, visiting with congress people and sharing personal stories would be a good step toward drawing attention to the need for Alzheimer’s research funding. It won’t be easy or immediate. Nonetheless, showing politicians the personal side of Alzheimer’s can inspire them to make it a top priority.

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Sometimes serendipity happens!  To follow the recent article “A Chance to Give Back”, I want you to know about the success of 85-year-old elder Ann, who has been able to record stories from her life even while dealing with mid-stage dementia.  This came about through the cooperation of Ann’s daughter Linda and the sensitive interviewing skills of freelance writer and personal historian Marjorie Turner Hollman.

I have requested that Marjorie tell you about how she assisted Ann to record her rich legacy of stories.  Do not miss the interviewing tips for audio and/or video at the end of the article.

Hoping this will give you some tools to assist your loved one to share some stories!

 

Never Afraid to Try Something New

“Polly want a cracker? Polly want a cracker?” Ann, a middle-stage 85 year old Alzheimer’s patient, chuckled as she offered a perfect imitation of the parrot from her childhood. She looked at the photo of her six-year old self, staring up at the family’s parrot in its cage, her younger brother on the other side of the cage, gazing upwards with equal attention. “We were told to stand just so, and to look up, which is what we did,” Ann said. Again, she crowed, “Polly want a cracker?” then laughed. “That’s just how he sounded!”
Ann was able to describe the photo in detail, and where in her grandmother’s house the photo was taken, pointing out the hand-sewn, tailored plaid dress she wore, made especially for her. “My younger brother is wearing just what young boys wore,” she explained. “Well, not when they were playing, but for formal occasions.”
Missing from Ann’s narrative were details such as when and where the photo was taken, information that others might not know about. I shut off my digital recorder and asked if she could include that information if we made another try at recording her story. She nodded, and when I pushed the record button she quickly began talking. But this time we’d lost all the lovely details of the parrot crying out, the descriptions of growing up next to the ocean, so close that the parrot could look out to sea and alert the family when ships passed by. I shut the recorder off again.
“Ann,” I said, “I wonder if, when you’re talking and forget to tell me about the parrot, I could simply point to it. Would that help you know that I want to hear about the parrot?” She nodded.
I was helping Ann record the stories and memories that were stirred by these important photos, which we would then store in her account on Legacystories.org. Once the photos and audio recordings were uploaded onto the website, her family could look at each photo while listening to Ann’s words describing the photo, just as she had done while sitting in her daughter’s dining room. I hoped we’d be able to create a recording of her voice alone. My past interviewing experience, both writing for newspapers, and writing personal histories, had always permitted me to ask questions, to clarify, to prod for more information. This method of interviewing, recording audio, was something new, not just for Ann, but for me as well.
Our next attempt was more successful. Ann was able to identify where the photo was taken as well as when, and who was in the photo. I pointed to the parrot. “Polly want a cracker?” she recited, then chuckled again. She noted the water fountain, described a few details, and then she described other items in the photo. At the very end, she revisited memories of the fountain, and laughed. “My brother and I had a lot of fun with that fountain.” Her voice reflected the twinkle in her eye.
We then recorded stories about other photos that Ann and her daughter Linda had chosen. The last photo was of Ann and her husband on their wedding day. The two young women in the photo were similarly dressed, making it difficult to identify who was the bride. With coaching, Ann described that she and her husband were on the right in the photo. But then she got stuck. “There’s nothing else to tell,” she shrugged.
“Oh, Ann, you have some wonderful things to say about this,” I countered. “If I wrote down a few key phrases, would that help you know we’d like to hear about them?” “Yes,” she said, “That would help.”
I grabbed a pen and paper, sent a prayer of thanks that Ann was still able to read, and jotted down two or three words—New Jersey, boardwalk, ocean. Ann nodded and then began telling me about the photo taken that had been taken on her wedding day, 1949. She told us she was the girl on the right, with her husband. I pointed to the other couple standing with her and her husband. She recalled how sweet the girl was, her best friend. Silently, I pointed at one of the phrases I’d written down—boardwalk. Ann continued describing what she recalled of the scene behind her. She offered vivid details, clearly shared. Summing up, she concluded, “It was the perfect end to a perfect day.”
As I packed up my things and headed home I thought about the privilege of working with Ann and helping her record her stories for her family. For me, too, it was the perfect end to an amazingly perfect day.

Marjorie Turner Hollman

Some interviewing tips for audio and/or video
1. Simple is often magical. Try simple steps first; they are less likely to add confusion, and may be just what the person needs to add special details to their story.
2. If a person has agreed to an interview, they have already expressed a willingness to please. Do not abuse this, but use it confidently. The person being interviewed wants to please you.
3. When gathering audio or video recordings, think ahead to what you are hoping for as an end product. If you simply want to gather a record of a family gathering, you will have fewer constraints than if you are hoping for a clear story from a single person. The interviewer’s reflex is to insert herself into the interview by asking clarifying questions. Audio, unless it is of a conversation (think Story Corps) is typically a single person narrating a single topic.
4. Be willing to experiment, to discover what strategies will be most helpful for each person, while keeping you, the interviewer, as the unseen (and unheard!) presence. Even if a person has Alzheimer’s, he/she is still an individual, and may need creative solutions to help with this process.
5. Don’t be afraid to rerecord. But pay close attention to your interview subject. If they are growing fatigued, take a rest, change rooms, take a walk, whatever you think might help, then see if resuming recording is possible. It may need to wait for another day, another time.
6. Be mindful of the time of day when you attempt to record stories. If you are not the caretaker, ask the person’s caretaker what his/her best time of day is, then do your best to arrange to record during that optimum time.
7. Your job is to help the teller share her story to the best of her ability. With that in mind, relax, really listen, and enjoy the experience of traveling to a time and place outside your own experience, knowing that your efforts are creating a gift for the teller’s family, and others you may never know about.
http://youtu.be/1yLULpPVdiU Video link of Ann sharing two stories at our local Show & Tell for Grownups, in Bellingham, MA in February. The video is professionally, tightly edited for Cable TV. What you do not see in the video are the number of digressions Ann made, and my drawing her back to help her focus on the story she wanted to share. What you do see is Ann in action, her wit, warmth and humor. She was the star of the day, and it was a joy for me to help make that happen.

 

Sincere appreciation goes to Marjorie Turner Hollman and to Ann for the most helpful information in this article.  Marjorie is a Certified Legacy Planner with http://www.LegacyStories.org and a member of The Association of Personal Historians.  To learn more about her writing services and workshops, go to http://www.marjorieturner.com.  Email marjorie@marjorieturner.com.  

To begin stories with your loved one, click here.

Your loved one may not realize he or she possesses a gift that costs nothing, that may grow to be cherished by grandchildren and great grandchildren for generations to come.  However, if you ask your parent or grandparent to tell you about his or her life, a typical response may be, “There’s nothing special about my life.  I can’t much think of anything to tell you.”

However, if you were to select with care a photo from a special time or place in their life, their spirit might jump to life with enthusiasm, remembering that special person, place or event.  Your loved one’s unique voice and personality can now be captured with an instant recording as he or she tells about an event during WWII or perhaps the time she hid in the barn to escape a dose of castor oil.

Used to texting and email, children and grandchildren of today don’t have long attention spans.  However, they just might take in a two- to three-minute vignette told by their grandmother about life in her day.

The online site for capturing your loved one’s voice as he or she describes a photo or two from the past is free and available for five such recordings, storage of 100 photos, and space for unlimited written stories.  The recorded stories are saved ‘in the Cloud’ to be shared with family and can be burned to a DVD to be cherished for years to come.

To access one such ‘talking photo’ from my family, click here.  Getting a start with five such recordings is free of charge.  You only need to register with your email and invent a password.  To visit the Legacy Stories site and get started, click here.

This experience is particularly enjoyable for your loved one, as the telling helps relive the pleasure of the original experience.  Loved ones in early to mid stage dementia could very well be successful with sharing memories in this way at this time in their lives. At a time when they are having to accept help from so many directions, being able to give something of value back to family could mean a lot.

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This is a novel about a man living with Alzheimer’s, told through varying perspectives of a family impacted by his diagnosis. The book really shows what someone with Alzheimer’s goes through as well as the experiences of those who care for him – including his doctor, wife and two children. AN ABSENT MIND will be available in March. 

 

AN ABSENT MIND

Saul Reimer is a common man just like many other men. He is a father and a husband, and while not perfect in either role, he is loved by his family and generally respected by his peers.  Unfortunately for Saul and his loved ones, they have something else in common with millions of individuals and families around the world – Alzheimer’s.

In his newest release, An Absent Mind (Avante Press, March 2014) author Eric Rill tells an all too familiar story of how this cruel and terminal disease impacts not only the person who is suffering from the condition, but also those who are an intimate part of his life.  With chapters speaking directly to the reader, in alternating voices by different members of the Reimer family as well as their doctor, the book chronicles the emotional (and sometimes physical) rollercoaster each endures during the onset and evolution of Saul’s declining mental health.  This unique approach gives readers a very authentic look into the mindset of Saul, his loving and often frustrated wife Monique, his compassionate, yet distant daughter Florence, and Joey, his self-centered, narcissistic son.

In An Absent Mind, readers are privy to Saul’s ramblings, emotions, lucid moments, and confusion, as they witness the downward spiral that Alzheimer’s inevitably thrusts upon its victims.  Rill also sheds light on how Monique, Florence, and Joey deal with their conflicted feelings about Saul as a husband and father.

While not autobiographical, Eric Rill writes from what he knows – having lived with a father who was diagnosed and suffered with Alzheimer’s.  “I knew I had to write this book to share the challenges faced by caretakers and loved ones as they watch someone they love deteriorate before their eyes,” said Rill.  In addition to providing a window into the lives of the Reimers (who could really be any family impacted by Alzheimer’s), Rill also integrates well-researched facts and observations about this dreaded disease into his writing.  He enlisted the help of Dr. Serge Gauthier, one of the world’s leading Alzheimer’s researchers, to make sure this information was accurate, accessible, and current.  “I wanted the reader to understand that Alzheimer’s is not just about memory loss, but rather the total destruction of a human being, both mentally and physically.”

Even though we know how it will end for Saul (as no one has ever outsmarted Alzheimer’s), Rill tells this heart-wrenching story in an uplifting manner that will engage the reader from the beginning to the end of the Reimer family’s journey.

For those who have been directly or indirectly impacted by Alzheimer’s, An Absent Mind will bring a level of comfort in knowing that they are not alone in dealing with the consequences and despair of this disease. For others, who don’t yet have a connection to Alzheimer’s, the novel will act as an education about the toll it takes on more than 35 million individuals and their families worldwide. 

One of the last memories of hearing my mother’s voice was, “Sugar, wear something on your head!” as I would be saying goodbye to her at the nursing home before heading back to Ohio.

Especially during this rough winter in the Midwest, I have longed to hear those familiar words from my mother one more time.  Their deeper meaning for me was, “I love you!”

As you know, our loved ones eventually lose the ability to communicate verbally.  But in my opinion that does not hinder their deep feelings. 

I remember the times when grandson Paul would pop in to her room for a few minutes – and this was following my mom’s stroke a few weeks before she passed.  I could almost see her body relax as Paul would speak lovingly to her, playfully touching her cheek or tickling her chin.

I remember brushing her hair and feeling her body acknowledge my touch.  She lived almost a month without nourishment following her stroke. 

I remember my mother’s family visit and my mom’s comfort to their familiar voices.  How much their visit blessed her and also me and my brother.  Even more was the calming presence of my brother’s church pastor, who came by nearly every day. 

I wish I could say to you that I stayed by my mother’s bedside to the end.  However, that was not the case.  I left twice – once to spend a weekend with our grandchildren and then a second time to return to Ohio for a day.  She passed before I could get back.  I was within two hours of making it.                   

The Columbus Dispatch released an announcement this week about a self-administered test that may be helpful for those of us who are directly related to someone who has dementia.  The article that follows appeared on CNN yesterday:

Could a test using only a pen and paper be enough to diagnose Alzheimer’s disease?

Researchers at The Ohio State University Wexner Medical Center believe that their Self-Administered Gerocognitive Examination (SAGE) test can help medical professionals find out a person’s cognitive ability early so they can have a chance to intervene before they develop the degenerative brain disease.

“What we found was that this SAGE self-administered test correlated very well with detailed cognitive testing,” Dr. Douglas Scharre, director of the Division of Cognitive Neurology and head of the Memory Disorders Research Center at Ohio State’s Wexner Medical Center, said in a press release. “If we catch this cognitive change really early, then we can start potential treatments much earlier than without having this test.”

The 15-minute, 22-question test can be taken at home by patients, who then bring the paper to get examined by a medical professional. The researchers believe that it can spot the beginning signs of trouble for dementia and Alzheimer’s disease.

The tests go through a variety of questions looking at different mental skills including orientation, through questions about the current date; language, through verbal fluency and picture naming tasks; reasoning/computation, by abstraction and calculation problems; visuospatial, from 3D construction and clock drawing; and executive (problem solving) and memory tests.

(See a selection of sample questions below.)


- How are a corkscrew and a hammer similar? Write down how they are alike. They both are… what?

- You are buying $1.95 of groceries. How much change would you receive back from a $5 bill?

 

SAGEquestion1.jpg
The Ohio State University Wexner Medical Center

 
- Draw a large face of a clock and place in the numbers. Position the hands for 10 minutes after 11 o’clock. On your clock, label “L” for the long hand and “S” for the short hand.

- What is today’s date?(from memory –no cheating!) Month__________ Date_______ Year_________


While the test cannot diagnose Alzheimer’s definitively, it is a good indicator of a patient’s cognitive abilities, according to the researchers. It may catch lapses in thinking abilities that might not come out in routine questioning or that patients may not notice themselves right away.

“Patients just come in too late to be identified. They come into their doctors office perhaps three or  four years after people have noticed specific cognitive issues,” he said.

Previous studies showed that 80 percent of people with mild thinking and memory problems would be identified by the SAGE test, while 95 percent of people without cognitive issues would not receive a worrisome score.

Researchers in the new study tested 1,047 people aged 50 and older who attended community events, such as educational talks and events at senior centers, and found that 28 percent of them had cognitive impairment according to the test. SAGE test makers recommend seeing a physician for follow-up if a person misses six or more questions on the 22-item test.

After the experiments, the participants were given their scores and information about the test. They were told to show their results to a physician and to tell them their initial score in order to use it as a baseline measure to compare future test results.

“Hopefully, this test will help change those situations,” Scharre said in a press release. “We are finding better treatments, and we know that patients do much better if they start the treatments sooner than later.”

The SAGE test was examined in the January issue of The Journal of Neuropsychiatry and Clinical Neurosciences.

Dementia is a group of diseases that involve declining memory and thinking abilities. One in three seniors die due to a dementia-type disease, according to the Alzheimer’s Association

 

Concussions linked to Alzheimer’s disease plaques

 Alzheimer’s is the most common form of dementia, and currently more than 5 million Americans are living with the disease, the Alzheimer’s Association added. It is the sixth leading cause of death in the United States.

 There is no cure for the disease nor do medical professionals know what causes it, though risk factors including diabetes, age, family history and genetic mutations. Concussions and cholesterol plaques recently have been associated with a greater chance of having the tell-tale protein plaque buildup in the brain that’s found in high levels in patients with the disease.

Dr. Simon Ridley, head of research at non-profit Alzheimer’s Research U.K., told the Telegraph that much more research is needed to see if the SAGE test is a valid testing alternative.

“One drawback of this study is that the test was not compared with other existing cognitive tests. It’s important to note that the test is not designed to diagnose dementia, and people who are worried about their memory should seek advice from a doctor rather than attempting self-diagnosis with a test at home,” he pointed out.

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To access the SAGE test, go to this site:  http://medicalcenter.osu.edu/patientcare/healthcare_services/alzheimers/sage-test/Pages/index.aspx.

 

 

As a caregiver are you frustrated by the bleakness of treatment possibilities for Alzheimer’s disease? Perhaps you have a close family member who has been affected by Alzheimer’s and share my fear of developing the disease and not being able to do anything about it.

Have you wanted to take a stand personally in the fight to conquer this horrible disease?

I am writing today to talk about a window of opportunity for us to make a difference – by joining the Alzheimer’s Prevention Registry.

I learned through a recent webinar about the Alzheimer’s Prevention Registry, spearheaded by the Banner Alzheimer’s Institute located in Phoenix, Arizona. This webinar was moderated by Dr. Jessica Langbaum, a principal scientist at Banner Alzheimer’s Institute and Associate Director for the Alzheimer’s Prevention Initiative.

The Registry is an easy way to get involved in the fight against Alzheimer’s. It is an online community of people who are willing and ready to take part in prevention research and prove that there is power in numbers.

Joining the Registry is very simple and easy. You may click on Alzheimer’s Prevention Registry and enter your email address. After you enter your email address, you will be presented with a few questions to better match people to research studies and information.

After you join the Registry, that information is stored in a secure database. You will receive email communication on a regular basis to provide you with information about the Registry, its mission, ways you can help, and what the Registry is helping to achieve.

As studies become available in your community or area of the US, you will receive separate email notifications about those research opportunities. Again, joining the Registry merely opens up the door for communication about research that’s going on. It does not require or obligate anyone to participate in a research study.

The Registry officially began in May of 2012. So far over 22,000 people have joined to date. People have joined to honor their family members – their husbands or mothers or aunts or uncles. They have joined the Registry in the hope that they themselves or their children do not have to be affected by this disease.

The goal is to have 100,000 people join the Registry before the end of 2013. Research studies have to screen many times the number of people than they actually need to fill a study. So 100,000 people are really needed to help fight this disease and find a cure.

The Registry is closely associated with the National Alzheimer’s Association Trial Match Program. Whereas the Trial Match program is phone based and may focus on treating people who already have Alzheimer’s disease, the Alzheimer’s Prevention Registry is web based and aimed primarily at matching people who are still cognitively healthy and going about their daily life with prevention focused studies. Those prevention studies may be healthy lifestyle interventions involving diet or exercise or observational studies where you answer some questions with a research team.

The toll of Alzheimer’s disease is reaching epidemic proportions. Right now over 5.2 million Americans are currently affected by the disease. Even more startling is that someone new receives the devastating diagnosis of Alzheimer’s every 68 seconds. It is the only Top Ten cause of death that cannot be currently prevented, treated, or cured. The number of people affected by the disease is expected to triple to 13.8 million in the United States by the year 2050.

The cost of Alzheimer’s disease is projected to increase from $203 billion today to $1.2 trillion by 2050. Virtually every healthcare dollar that Medicare and Medicaid spend by then could be related to Alzheimer’s without anything to spare for other serious illnesses.

Every person who joins the Registry brings us one step closer to that break-through discovery that may transform the treatment of Alzheimer’s and then allow us to truly defeat it for a far different future we can look forward to.

I have joined the Registry and urge you to do the same by a click here.

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