Tag Archives: Alzheimer’s

Advocating for aging issues in the midst of political turmoil

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Aging is a bipartisan issue. Whether you’re a Republican, Democrat, Independent, a member of another political party or reject all such labels, all of us will experience the consequences of aging, save for those who meet a premature death. Even those who don’t experience old age themselves may have dealt with aging issues when caring for a loved one.

As Washington deals with political upheaval, the lives of seniors hangs in the balance. The work to address senior and caregiving issues must continue, no matter who resides in the White House. I subscribe to the Alzheimer’s Impact Movement newsletter, and their January update provided a list of Congressional members who play an important role in committees that address Alzheimer’s and aging issues.

In addition to your local representatives, reaching out to the Senate Committee on Aging is a good place to begin. The bipartisan leadership includes:

  • Chair: Sen. Susan Collins (R-ME)
  • Ranking Member: Sen. Bob Casey (D-PA)

Their contact information can be found on the committee’s website, along with an online submission form.

According to AIM, just this past week, 12 senators sent President Trump a letter to encourage greater investment in Alzheimer’s research and introduced a resolution to make address Alzheimer’s issues an “urgent national priority.”

So call your representatives, email them, write letters, reach out to them on social media … make your concerns known. I do believe personal stories make a difference, and can help fuel greater legislative effort.

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Learning the language of Alzheimer’s

I’m reposting this excellent piece from Marie Marley on how to effectively communicate with those who have Alzheimer’s. It’s really all about being in the moment with that person, and not worrying about right or wrong, truths or untruths. Learning a new communication style is so important because many people with dementia still crave human interaction.

“Adopt the pace of nature: her secret is patience.” Ralph Waldo Emerson Today we welcome award winning author Marie Marley to The Purple Jacket. Yesterday afternoon I walked into Mary’s spacious room. Mary is a woman who has few visitors and who I’ve volunteered to spend a little time with every week. I greeted her, […]

via 5 Tips for Talking With a Person Who Has Alzheimer’s — The Purple Jacket

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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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A visit to Amy’s Place

I finally had the pleasure of visiting Amy’s Place, a memory care cafe in metro Atlanta. Amy’s Place was selected by Atlanta magazine as a 2016 Groundbreakers finalist. This year the theme was how to make Atlanta a better place to grow old.

Amy’s Place certainly fulfills that mission. The charming home is open free of charge to people with dementia and their caregivers. It is designed as a place to visit and relax. Two adorable dachshunds bring wail-tagging joy to visitors, and caregivers can utilize a fully-stocked kitchen and shower while their loved ones receive attention and supervision from staff. Amy’s Place also offers caregiver support groups and fun social events, like painting classes.

I had a chance to meet co-founder Pam Van Ahn at the holiday party held at Amy’s Place last week. She and her sister Jean opened Amy’s Place earlier this year and are receiving rave reviews from the caregiving community. The memory cafe is part of their nonprofit, Caring Together in Hope.

The more I learn of programs like this, the more hope I have that we as regular citizens can make a difference in the lives of those with dementia and just as importantly, their caregivers. If you know of programs in your area that are designed to help caregivers, let me know in the comments section. I’m working on putting together a list of resources for my own Respite Care Share project.

 

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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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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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