Tag Archives: Alzheimer’s

Is the media misleading the public on Alzheimer’s?

It seems to be a mixed blessing that the media is paying more attention to Alzheimer’s.

On the one hand, the spotlight on a disease that has long been kept in the shadows is welcomed. But modern journalism’s need for clicks sometimes leads to misleading headlines, which only hurts the awareness movement.

Brain

Recently, a study came out which demonstrated in a very small sample of autopsies of 8 people who had been diagnosed with the rare brain disease, Creutzfeldt-Jakob disease related to growth-hormone treatment, 6 of the 8 showed an increase in amyloid plaque that scientists believe is linked to Alzheimer’s.

It is certainly an interesting study, and the results were unexpected, but there are not any solid takeaways until larger studies can be performed. Yet, in the click-crazy world of online journalism, some outlets ran with the headline, “Is Alzheimer’s contagious?”

I’ve read accounts from those with Alzheimer’s who criticize the use of the term “Alzheimer’s sufferer” because they are doing their best to live successfully with Alzheimer’s and sufferer sounds like there is no hope with anyone with the disease.

I might be guilty of using the term “suffering” when describing my Dad’s experience with Alzheimer’s, but that’s because I truly believe he was suffering. I don’t think it should be used as a blanket term, especially for those in the early stages of the disease.

As a journalist, I try to be aware of these considerations, but I encourage everyone to politely correct those who provide misinformation on Alzheimer’s or any other disease.

The old expression of “all publicity is good publicity” may be true for Alzheimer’s, but it is the responsibility of advocates to make sure the coverage is accurate.

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The $1,800 jacket

Always check pockets before donating or discarding clothing, especially when it belonged to someone with Alzheimer’s!

I have written previously about how Dad was obsessed with money. He carried around a bag of change and would dump it on the bed to sort it. He was paranoid people were trying to take his money so he carried around a large wad of bills wherever he went. The staff at the library Dad frequented told me about this, how they would try to tuck it back into his shirt pocket as it threatened to fall out at any moment.

dad jacket

This behavior is common to those with Alzheimer’s. So is stuffing things into the oddest places.

I finally tackled my parents’ clothes closet in earnest. I thought I had gone through my dad’s jacket pockets on a previous trip, knowing full well his tendency to hide things. We found an old family photo under the couch cushion, and I found letters and photos tucked inside junk mail.

I pulled out one particularly heavy and ratty old coat. I set it down on the junk pile and heard what sounded like the jangling of change. At the same time, I saw a bulge in the pocket. I reached in and pulled out a bag of coins, a lighter, and a large wad of bills.

The bill on top was a $100. I could also see dollar bills and foreign currency in the roll. I figured, okay the top bill was a $100, but the rest will probably be smaller bills.

Well, there were a lot of dollar bills and pound notes, but I was shocked to find the wad of bills was worth over $1,800!

This will make a small but noticeable dent in my credit card debt, so I am very grateful to have discovered it.

When caring for those with dementia, what appears to be trash can certainly turn out to be treasure!

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A birthday missing a song

Today is my birthday, and I have to say I don’t mind being a year older. At least it offers me a symbolic new start, as 40 was one of the most difficult years of my life.

I’m having a lovely time in the mountains, but there is of course one thing missing. As I’ve mentioned previously on this blog, my parents always made a big production out of singing “Happy Birthday” to me over the phone.

I have a poor recording of Mom singing “Happy Birthday” to me last year, recorded from my cellphone. It’s only barely listenable, but I’m glad I have it.

I do have a good video and audio version of my parents singing “Happy Birthday” to me, but sadly, it was when Dad was rapidly declining in the care facility. The staff had him so drugged up that he could barely stay awake, and he mumbled through the song. Mom tried to compensate by being overly cheery, but I know her heart was breaking inside.

Just the year before, Dad belted out the best version ever, and even sang another classic crooner song. That is the recording I wish I had.

While I sometimes feel that in today’s world, people are so busy recording their lives to post on social media that they forget to be in the moment, the upside is that they will have all of the moments recorded to cherish later.

So my birthday wish is for everyone to experience and if so desired, record loving moments with their family. It truly is something we often take for granted, until the opportunities no longer exist.

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White House Conference on Aging: Great discussions, now we need to see action

Update: I was moved by many of the stories and statistics shared at the White House Conference on Aging. How little paid caregivers earn and the rallying cry to pay them a livable wage of $13/hour. A woman who juggles the demands of motherhood and her father who has Alzheimer’s, yet sits on hold or gets the run-around when calling for help from government agencies.

There were many programs and initiatives unveiled at the conference, and while many sound promising, the proof will be in the results.

Original post:

The White House Conference on Aging is happening today. I think it will be of interest to many who follow this blog.

I wish I could be in Washington, D.C. to participate in person, but I am following along with the live stream of the conference and taking part in the conversation on social media by using the hashtag #WHCOA.

whcoa logo

I hope the conference will help generate greater awareness for the issues impacting caregivers in America, both family caregivers and professional caregivers. The fact that the government is taking a day to discuss aging issues is progress, but of course, legislative action and government funding is ultimately what is needed.

If you catch any of the conference, share your thoughts below.

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Glen Campbell documentary ‘I’ll Be Me’ a powerful, profound look at Alzheimer’s

I finally had the chance to see the documentary about Glen Campbell called, “I’ll Be Me.” I highly recommend seeing it, even if you are not a fan of Campbell’s music.

The documentary is an unflinching yet loving look at how Campbell and his family have managed his Alzheimer’s diagnosis. The film once again confirms the power of music. It was amazing to see how long Campbell’s music ability endured, even as he entered the late middle stages of the disease.

The film, made in conjunction with his family, doesn’t shy away from the ugly aspects of Alzheimer’s. Viewers witness Campbell’s temper, repeating questions, communication difficulties, wandering, discussions of incontinence episodes and paranoid outbursts.

Viewers get a behind-the-scenes look at the sometimes chaotic backstage scene before shows. As we all know, those with Alzheimer’s have good and bad days, until they end up with more bad ones than good ones. When you are performing in front of hundreds of people, the good and the bad are magnified.

Campbell is now in the final stages of the disease and lives in a residential care facility.

For Campbell fans it will be difficult to watch one of the greatest guitarists of all times deal with such a debilitating disease, but his phenomenal guitar work is on display throughout the film, as is his sense of humor and his fighting spirit.

If you’ve seen the film, please share your thoughts.

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Guest article: The Disease of Forgetfulness

By Jami Hede of Exploring Dementia


In 1901, German neuropsychiatrist Dr. Alois Alzheimer took up a position at the Institution for the Mentally Ill and for Epileptics, in Frankfurt, Germany. One of the first patients he examined there was a woman named Auguste Deter, who was 51 years old. Just a few years previously, Frau Deter had been a happy wife and mother, living a normal life for the time period. But then she began showing symptoms of memory loss, trouble sleeping, delusions, temporary vegetative states, dragging sheets around the house, and screaming for hours in the middle of the night. Poor Karl Deter had no choice but to admit her to the institution, because he just couldn’t care for her any more, and also continue to work to support their daughter.

In 1996, Frau Deter’s actual medical records were discovered, written in Dr. Alzheimer’s own handwriting (and her own, at times). The neuropsychiatrist made careful and accurate transcriptions of his interviews with his patient, and a short excerpt of them is given here:

“What is your name?”
“Auguste.”
“Family name?”
“Auguste.”
“What is your husband’s name?” – she hesitates, finally answers:
“I believe … Auguste.”
“Your husband?”
“Oh, so!”
“How old are you?”
“Fifty-one.”
“Where do you live?”
“Oh, you have been to our place”
“Are you married?”
“Oh, I am so confused.”
“Where are you right now?”
“Here and everywhere, here and now, you must not think badly of me.”
“Where are you at the moment?”
“We will live there.”
“Where is your bed?”
“Where should it be?”

Dr. Alzheimer asked Frau Deter many questions, including a test of her memory, and also asked her to write her name. She attempted the latter, but repeated, “I have lost myself.” She was then put into an isolation room, and when released ran out screaming, “I do not cut myself. I will not cut myself.”

In subsequent writings, Dr. Alzheimer described his patient as having no sense of time or place, and poor recall for details of her life, made frequent irrelevant and incoherent statements, had rapid and sudden mood changes, and often “accosted” other patients (who would then assault her). He indicated that he had previously seen patients who showed similar behaviors, but they were much older than Frau Deter. He used the term “presenile dementia” to describe her, and stated that she had the “Disease of Forgetfulness.”

In 1902, Dr. Alzheimer took up a position in Munich, where he worked with another neuropsychiatrist named Dr. Emil Kraepelin. (Dr. Kraepelin is quite well-known, in his own right, for work in the area of schizophrenia and other disorders.) He continued to follow Frau Deter’s case, however, and in 1906 was notified of her death, apparently due to sepsis related to an infected bedsore. He requested that her medical records and her brain be sent to him for further study. It was upon examining her brain that he discovered the neurofibrillary tangles and plaques which are now considered characteristic of the disease.

Dr. Alzheimer gave a very significant presentation to the 37 Conference of South-West German Psychiatrists, in November of 1906, in which he discussed the case of one Auguste D. The following year, he published an article in which he described “A serious disease of the cerebral cortex.” However, the person who first coined the term “Alzheimer’s Disease” was Dr. Kraepelin, and not Alzheimer. He first did this in writings published in 1910.

And the rest is history, as they say. Now, the disease which bears Alzheimer’s name is the most common of many different forms of dementia which have been reported since his time.

Source material is from Wikipedia, “The Lancet,” and others. For more informative articles about dementia, visit Exploring Dementia.

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Our fears are often misguided

Easter makes me think of eggs, of course, and how my dad avoided them like the plague. He feared having a high cholesterol level. Recent studies have debunked many of the previous reported links between egg consumption and high cholesterol, but when I was growing up in the 1970s-1980s, it was a big health focus.

easter eggs

As I got a little bit older and a tiny bit wiser, I thought it was strange that my dad would worry so much about eating one measly egg but smoked a pack or more of cigarettes each day. Surely the coffin nails would kill him via lung cancer before he developed heart disease.

We were both wrong. Despite the decades of smoking and the decades of egg aversion, Alzheimer’s claimed my dad’s life.

It made me think about how often our fears are misguided. We worry about x, when it’s really y that’s getting ready to do harm.

Fear is a valuable self-preservation tool, but it can also hold us back from our potential.

With both dementia and cancer prevalent in my family, I do think about what I eat and other lifestyle choices probably more than the average person.

But I also know I could get hit by a bus on my way to work.

There’s a balance there somewhere, everything in moderation, as the saying goes.

At least I’m going to enjoy my eggs.

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