Tag Archives: dementia

‘Alzheimer’s: Every Minute Counts’ a tender yet sobering documentary

I strongly believe that to reach people about an issue they are unfamiliar with, presenting them with experiences from real folks is the way to go. The new PBS documentary, Alzheimer’s: Every Minute Counts, does just that, highlighting the emotional toll the disease takes on caregivers, while also demonstrating the physical and financial consequences associated with the disease.

The documentary doesn’t sugarcoat the situation. It uses the term, “families in crisis” and how our government and society are largely failing to meet their needs. As those of us who have personally been touched by dementia likely know but the general public may be less aware, Alzheimer’s doesn’t discriminate based upon race. The Duartes in Springfield, Missouri are one of the families highlighted in the documentary. Daisy takes care of her mother, Sonia, who was diagnosed with early-onset familial Alzheimer’s at the age of 57.

Families like the Duartes are fighting back, by participating in clinical trials and telling their story to lawmakers. Daisy spoke to members of Congress, who gave a sympathetic ear and related their own tales of family members with Alzheimer’s. Right now, our government is in turmoil, but we must keep the momentum going in the battle against Alzheimer’s and in our campaign to better support caregivers.

The documentary also highlights Rick in Florida, who is overwhelmed by the high cost of residential Alzheimer’s care, when his mother’s condition prevents her from staying in her home. Rick is also saddled with guilt and remorse, because Phyllis is adamant about staying in her own home. This is a heartbreaking decision that so many families face.

I highly recommend this documentary. While it is tough to watch families struggle with this disease, there are people out there dedicating their lives to finding effective treatment and supporting caregivers. Hopefully this film will inspire others to join the fight.

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Raising dementia awareness, one citizen at a time

To mark MLK Day, I thought it would be appropriate to highlight a gentleman who is truly an inspiration when it comes to raising dementia awareness. His success proves that all of us can make a positive change in our world, if we simply try.

Norman McNamara is a UK resident who was diagnosed with dementia at the age of 50. (Initially misdiagnosed with Alzheimer’s, it was later discovered he has Lewy body dementia.) After being treated rudely by a shopkeeper, he was inspired to raise awareness of dementia in hopes of improving the daily lives of those with dementia in his community. With the help of his wife and community members, the Purple Angel project now has ambassadors and supporters worldwide.

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Purple Angel logo, designed by Norman McNamara and caregiver Jane Moore.

If you spend time in the world of dementia online, you have likely seen the Purple Angel logo. You may have seen it in the windows of businesses.What the emblem signifies is that the business owner and staff have read informational material: the “Guide to Understanding Dementia” by McNamara and “What is Dementia” by the Alzheimer’s Society. By raising awareness of dementia and the challenges those with dementia face, business owners can offer more appropriate and compassionate service, helping create a dementia-friendly community.

A short film about McNamara and the Purple Angel project, Norrms, has been released and McNamara has written multiple books on his experiences with dementia.

It’s inspiring to see how one man’s desire to improve his community has sparked a worldwide campaign, raising dementia awareness one neighborhood at a time. The success of grassroots campaigns like this inspire me to continue my work on Respite Care Share. No one person can solve the challenges of dementia and caregiving alone, but each step concerned citizens take can make a big difference.

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Touch in Dementialand (aka The Huggers and the Non-Huggers) — Welcome to Dementialand

I’m sharing another post from the wonderful series that Welcome to Dementialand has written. This one really hit home with me, because my dad was definitely a “non hugger.” He was never very demonstrative, even before dementia, but when my mom would visit the memory care center, and she would try to hug him goodbye, he would admonish, “No more hugs!” My mom tried to joke about it but I know it hurt her.

That being said, it is very important to recognize and honor the level of touch a person with dementia demonstrates they want. There are many factors involved, as the post explains.

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The last photo of Dad and I together, July 2011.

This is the second of a series of five posts about the senses in Dementialand. Today we focus on touch. The issue of touch, or tactile stimulation, for those with dementia is complex. An entire book could be written on the topic, and I will be clear that this post is not a complete summary of […]

via Touch in Dementialand (aka The Huggers and the Non-Huggers) — Welcome to Dementialand

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Ways to battle wandering

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One of the most frightening aspects of my dad’s dementia was his tendency to wander. It is unfortunately a common symptom of Alzheimer’s and other dementias. It can place people in life-threatening situations. In fact, a gentleman with Alzheimer’s in the same town where my parents retired wandered away from his home one winter and died from exposure. He’d fallen into a ditch and had gotten tangled in some weeds and brush.

Fortunately, my father’s wandering never led to physical danger, but it did scare my mom and I. On a few occasions, my mother had to call the police, who were wonderful about tracking my father down, but it was nerve-wracking until he was home. It also became impossible for my mother to take my dad on any errands, because she couldn’t trust him to wait for her. One time he wandered away while she was in the dentist’s chair, and ended up at a fast food restaurant a few doors down, which he claimed was full of spiders. Another time, he wandered away from McDonald’s while my mother was in the restroom. The police found him near the drive-thru.

When I was contacted on Twitter about A Caregiver’s Guide to Wandering, I was interested in learning more. The guide was inspired by Sergeant Jacqueline Fortune of the Harris County Sheriff’s Office in Houston, Texas, who’s department was using Boerner, Inc.’s McGruff Safe Kids ID Kit to address wandering calls in the area they serve. The company decided to create a guide to help caregivers cope with the specific wandering issues associated with dementia.

The 12-page guide offers innovative, concrete tips on preventing wandering as well as developing an action plan to implement when a wandering incident occurs. The guide is designed to be used by agencies — it is in use in the VA Hospital in Palo Alto, California and in agencies in thirteen other states, including several Area Agencies on Aging.

I believe this guide could be useful to every dementia caregiver. If you know of an organization that works with the aging in your community, recommend A Caregiver’s Guide to Wandering as a resource for dementia caregivers.

Full disclosure: I received a complimentary copy of the guide for this review.

 

 

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Will a dementia wonder drug suffer from price gouging?

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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

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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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