Tag Archives: dementia

Will a dementia wonder drug suffer from price gouging?

color pills

If and when a medication that reverses and/or prevents dementia arrives, will anyone but the wealthy be able to afford it? I’ve been pondering this question ever since the pharmaceutical company Mylan was roundly criticized for drastically increasing the price of EpiPens, the common treatment used for severe allergic reactions.

As with Turing Pharmaceuticals and its 5,000-percent increase for its toxoplasmosis treatment Daraprim, Mylan issued a significant price hike for a drug that had been on the market for quite some time. But what about new drugs that are medical breakthroughs for diseases that have proven elusive to treat?

Let’s face it, a medication that could effectively treat dementia would be one of the major medical breakthroughs of modern times. (Of course we must consider that there are several forms of dementia, so a medication that can target Lewy Body Dementia may not work in Alzheimer’s patients, and vice versa. )

Focusing on Alzheimer’s disease, the demand for a proven effective treatment is going to be huge. In an NPR interview about how drug companies price their products, an expert reveals the main factor is how much are people willing to pay for the drug. The interview focuses on Gilead Sciences and its drug Sovaldi, which can cure hepatitis C in most cases. The medication was much more effective than anything else on the market at the time, and hepatitis C can cause serious health issues if left untreated. The medication only needs to be taken an average of 12 weeks, so the price per pill was higher than it would have been for a treatment that took longer. You may have seen the headlines, “A $1,000 pill.” It was true that Sovaldi was priced at a total of $84,000 per bottle when it launched in 2014, though thanks to competition and public outcry, it costs about half that now.

So how much do you think families who have a member battling Alzheimer’s will pay for a medication that could restore their loved one’s sanity? It’s easy to say that a cure is priceless, but in reality, there is a price tag on everything. Perhaps the more interesting question is if the government should step in and regulate prices in such cases, in the name of public health.

I know that if an Alzheimer’s cure pill had been available while my dad was alive, at the prices listed above, we would not have been able to afford it unless Medicare paid for most of it. While I am a firm believer in the free market, I also don’t think any family should have to let a member die because they can’t afford medication.

What are your thoughts? Should medical breakthrough drugs be more heavily regulated to ensure access to the general population?

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Dementia’s communication mysteries

I have found Kay Bransford’s blog series on “things never to say with someone with dementia” enlightening and wanted to share. Much of it I can relate to through my dad’s dementia, but there are certainly things I wish I could have done differently, if only I had known sooner. I’m passing along these words of wisdom from a dementia caregiver warrior in hopes it will help another family going through a similar experience.

When someone with dementia is silent, it does NOT mean they don’t understand you.

via Don’t assume they can’t understand you because they are silent. — Dealing with Dementia

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Legendary coach Pat Summitt gone too soon

Even if you are not a women’s college basketball fan, you probably would have recognized the former Tennessee Vols coach and her intense sideline expressions. Pat Summitt, the winningest coach in collegiate sport history, has died from Alzheimer’s complications at the age of 64.

Though early-onset dementia is usually more aggressive, I am still surprised at how quickly the disease claimed Summitt.

Word of her declining health spread on social media over the weekend. After being diagnosed with early-onset Alzheimer’s in 2011, Summitt retired from coaching in 2012 but was an active and passionate  Alzheimer’s activist. Over the last year or so, she had made less public appearances, but I had no idea her health had declined so significantly.

Again, even if you don’t care about sports statistics, Summitt’s record was absolutely amazing. Summitt amassed the most successful coaching career in collegiate history with her head coaching record of 1,098 wins and 208 losses, earning her an impressive .841 win percentage. That’s best college coaching record, male or female.

Known for her fierce competitive streak and steely-eyed intensity, players remembered Summitt as a tough but gifted coach who encouraged them to give their all in each game.

In response to her Alzheimer’s diagnosis, Summitt said, “There’s not going to be any pity party and I’ll make sure of that.” After the end of her coaching career, Summitt worked tirelessly to raise awareness for Alzheimer’s by establishing The Pat Summitt Foundation.The Pat Summitt Alzheimer’s Clinic at the University of Tennessee Medical Center is scheduled to open in December.

Summitt’s passion and dedication will be missed on and off the court. I hope her death at such a young age will at least make people take note that Alzheimer’s is not just an “old person’s” disease, and that it can claim the lives of even the toughest fighters among us. (Though one could argue that death is victory over Alzheimer’s.)

May she rest in peace, and my thoughts are with her son Tyler and the family.

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A call to support a fellow artist and caregiver

Many of you dear people who follow The Memories Project dabble in writing or other art forms, and are either caring for or lost loved ones to dementia.

Emily Page is an artist and blogger who recently lost her father, who had FTD. She has started a crowdfunding campaign for a book she is writing about the experience, which will include some of her fabulous art.

If you are so inclined and in the position to do so, please consider donating to her campaign. You can find out more about the project on her blog and via her Publishizer page.

I’ve never met Emily personally, but I have a feeling we would get along, because we both love cats and bourbon!

In less than 72 hours, I have had over 250 pre-orders for my book, Fractured Memories, about my family’s sometimes hilarious, sometimes horrible journey through my dad’s dementia. Seriously. Are you people kidding me? Did you know you were that awesome? Did you? I kind of vaguely suspected you might be pretty cool, but damn, I […]

via You People Are The Best People — The Perks of Being an Artist

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Guest post: 5 tips for reducing your risk of developing Alzheimer’s

By Vee Cecil

blueberries

Image via Pixabay by JanTemmel

It seems every week, there’s a new study recommending that people do this or don’t do that to reduce their risk of Alzheimer’s. The most reliable tips line up with an overall healthy lifestyle. Guest blogger Vee Cecil highlights several popular recommendations. – Joy

Alzheimer’s disease isn’t a normal part of aging, although it is much more prevalent among seniors ages 65 and older. In fact, the risk of developing Alzheimer’s disease rises with age, doubling every five years beyond age 65. The aging population in the United States continues to grow as the Baby Boomer generation enters its senior years, thus, the incidence of Alzheimer’s disease is also on the rise.

As members of the Baby Boomer generation are expected to live longer, healthier lives than the generations before them, Baby Boomers, as well as younger generations, seek ways to maintain their health and well-being long into their golden years. While there is no surefire preventative measure that eliminates your risk of developing Alzheimer’s disease, there are a few lifestyle changes that may help to reduce your risk.

  1. Exercise regularly and avoid excessive weight gain. A healthy weight and a physically active lifestyle help you to avoid developing diseases such as heart disease, high blood pressure, and diabetes. In fact, studies have linked diabetes to a higher risk of Alzheimer’s disease. If you are among the 10 percent of older Americans who have diabetes, proper management of the disease is essential. If you aren’t already physically active, consider taking up a cardio activity like walking or swimming. Swimming is an especially good choice for seniors because it strengthens muscles that help reduce your risk of falling and is also easy on the joints.
  1. Eat a diet rich in vitamins and nutrients. According to an article appearing in ABC News, 16 researchers presented convincing evidence of the benefits of various nutritional strategies in reducing the risk of developing Alzheimer’s disease at the International Conference on Nutrition and the Brain in Washington, DC, in 2013. For instance, minimizing your intake of saturated and trans fats and getting enough vitamins and other nutrients from diet staples such as vegetables, legumes, fruits, and whole grains may contribute to a reduced risk of developing Alzheimer’s disease.
  1. Berries, in particular, have beneficial properties that may combat memory impairment. “Berries contain high levels of biologically active components, including a class of compounds called anthocyanosides, which fight memory impairment associated with free radicals and beta- amyloid plaques in the brain,” explains Prevention.com. For maximum benefit, make berries a part of your daily diet.
  1. Reduce your risk of heart disease. Scientists continue to research prevention strategies, but there is not yet a proven way to prevent Alzheimer’s disease. However, there is strong evidence to suggest that many of the same risk factors that increase your risk of heart disease also increase your risk of Alzheimer’s disease; therefore, it’s possible that lowering your risk of heart disease would also lower your risk of developing Alzheimer’s. Such risk factors include high blood pressure, high cholesterol, excess weight, and diabetes. A combination of physical activity, cognitive stimulation, social engagement, and a healthy diet is a multi-component approach in development with the hope of reducing the risk of Alzheimer’s disease.
  1. Stay mentally active. That includes reading, writing, and participating in any activities that engage your brain, such as puzzles, games, and even activities like sewing or crocheting. Studies have shown that people who remain mentally active and regularly participate in reading, writing, and other brain-challenging activities perform better in tests that measure memory and thinking. Learning promotes brain health, and activities that engage your mind are thought to help reduce memory decline over time.

There may not yet be a proven method for preventing Alzheimer’s disease, but taking steps to ensure your overall health and well-being will help you lead a longer, more vibrant lifestyle long into your golden years. Because the risk factors for Alzheimer’s disease overlap with those associated with other diseases, such as diabetes, a proper diet and regular physical activity will go a long way in preserving a healthy body and mind.

Vee Cecil is passionate about fitness, nutrition and her family. A Kentucky-based personal trainer, bootcamp instructor, and wellness coach, she also recently launched a blog, where she shares information on how to lead a happy, healthy lifestyle.

 

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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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