Exciting News: Interview(s) on HealthCentral!

I’m thrilled to report that HealthCentral, a medical website that focuses on “real stories” of people dealing with illness, has just published a two-part interview with me about caring for my father in Peru. You can read Eldercare Lessons from the Land of the Incas: Part I and Part 2 here.

The interviews can also be found on Minding Our Elders (Part 1, Part 2), which focuses on caregiver and elder support.

I’m grateful to author/editor Carol Bradley Bursak for reaching out to me to learn more about our Peruvian eldercare experience and for helping me share our journey with a national audience. I’ve known Carol for about half a year on Twitter and am a big admirer of her website Minding Our Elders–which is full of useful and very well researched articles on many aspects of the caregiving experience. When she suggested doing the interview for HealthCentral, I jumped at the chance. I answered Carol’s questions via email, and when my answers were effusive, she graciously gave me a two-part story AND ran photos of my father with his healthcare aides.

Thank you, Carol!

Reaching more readers is very important to me. When I learned in Peru is that it is possible to give Alzheimer’s patients compassionate, affordable care, both in the home and in a nursing home setting. The United States isn’t Peru, but certainly aspects of the Peruvian model could be implemented in the U.S. to relieve burdens on caregivers. That’s what this blog is about, and I extremely pleased to be sharing this with more people who want the best for their loved ones.

 

 

Dogs in Purple Tutus and Color-Coded Flowers

Two weeks ago, I participated in my first walk for a cause, the Gainesville area Walk to End Alzheimer’s (Oct. 21). I only raised $80, but it was a great experience and it gave me insight into how much coordination goes into events like these. Some observations:

  • Walk to End Alzheimer’s events draw on some very powerful organzing tools, from online marketing tools to at-site features. I didn’t sign up for the march until the day before (!), but within a few hours, the organization had produced a video that I then shared on Facebook and Twitter. Surprisingly, two friends pitched in money, and so I had the pleasure of being able to walk in support of them and their moms, in addition to honoring my dad.
  • Color is everything with these walk-for-a-cause events. I don’t know how the Alzheimer’s movement did it, but they were the first charity to claim royal purple as their color, and this enables them to quickly brand and unite disparate people and events. The official t-shirts were, of course, in this color, but experienced walkers went further with it, sporting pants, caps, and even tutus in this shade. Little kids and dogs were wearing it, as well; no matter who (or what species) you were, you “belonged,” thanks to the unifying effect of color branding.
  • We were given the option of walking either .9 miles or 3 miles, and that flexibility meant that people of varying degrees of physical fitness could participate. Kudos to the organizers for offering those choices.
  • More color branding offered further ways to express support for and experiences with Alzheimer’s. At a big booth next to the stage, you could pick up flower pinwheels in various shades. A purple flower stood for losing a loved one to Alzheimer’s; yellow meant you were currently a caregiver; orange was for supporters, and blue was for dementia sufferers. On stage, speakers would shout out, “Raise your flower if you’ve lost someone to Alzheimer’s,” and a sea of purple flowers rose above, spinning in the morning breeze. It was a simple and meaningful way to honor loved ones and to find commonality with other people.

Continue Reading

Walking to End Alzheimer’s in Gainesville, Oct. 21

Format Video

I’ll be participating in honor of my dad in the 2017 Gainesville Walk to End Alzheimer’s. I’m walking as part of the ALL-IN team from the University of Florida (Aging and Language Labs and Investigators). The team’s goal is $2,500.

If you’d like to learn more about the event, the link to my video below has good information.

http://act.alz.org/site/TR?px=14203473&pg=personal&fr_id=10435&play=1

On my Donations Page, you can learn about why I’m walking. It also gives an opportunity to donate to help end Alzheimer’s, if you feel so inclined. One of my childhood friends just made a donation in my father’s name, which is very moving.

I’ll post about the walk after it’s all done.

 

U.S. Deaths from Alzheimer’s Surge 55%, Says CDC

The healthcare tsunami that is looming over the U.S. became a front-page news story on Friday when national media reported that mortalities from Alzheimer’s have risen 55% since 1999.  And more patients are dying at home rather than in hospitals, which reflects a greater burden being made on caregivers.

CNN, the New York Times, Scientific American and scores of other news outlets cited a new report by researchers from the Centers for Disease Control (CDC) and Georgia State University, which released these figures:

  • 93,541 Americans died from Alzheimer’s disease in 2014, an increase of 55% compared to 1999;
  • In that same period, the percentage of Alzheimer’s patients in the U.S. who died in a nursing-home or hospital setting dropped by more than 50%: from nearly 15% in 1999 to less than 7% in 2014;
  • At-home deaths increased from nearly 14% in 1999 to about 25% in 2014.
  • By 2050, Alzheimer’s is expected to affect 13.8 million U.S. adults, up from 5.5 million in 2017. Translation: Deaths from the disease are going to rise 150%.

The media also broadcast the report’s conclusions that these multiple trends are hitting caregivers with hurricane-like force. Continue Reading

“I Think I Love You”: Thoughts on David Cassidy’s Dementia Diagnosis

David Cassidy was the television version of the cool older brother I never had. Hearing that he has dementia feels like some protective cone over my childhood has been wrenched away.

As an only child growing up in the late ’60s and early ’70s, I often felt out of place in working class New Jersey. Most of the families on my street had four or five kids, and at school some kids used to call me a “lonely only” or make snide remarks about my being “spoiled.” I loudly told them to shut up, but part of me felt bad about being different. I sometimes fantasized about having lots of siblings, but mainly my daydreams centered on one thing: Having an older brother who would protect me.

I imagined this perfect big brother beating the shit out of Donald Schmidt when he punched my arm in the coatroom in fourth grade. (Instead, I challenged Donald to a fight outside and got punched in the face.) I imagined this big brother pushing the junior high kids off the bridge when they threw lit cigarettes into my bookbag. (The cigarettes made brown burn holes.) When a gang of nasty seventh-graders ganged up on my friend Judy Chen and called her a “Chink,” I envisioned my big brother grabbing them by their hoodies and hauling them off to the principal’s office like some kind of civil-rights-era Sir Lancelot.

A few years later, I found myself wishing for a cool older brother who would bring his guy friends over to the house so I could get to know them.

Back in elementary school, my go-to role model for an older brother was Keith Patridge, as played by David Cassidy on The Partridge Family. He was relaxed, funny, confident—the de facto father figure in a household run by his widowed mother. Continue Reading

David Cassidy Has Dementia

Format Video

Back in the 1970s, David Cassidy became a teen idol as the lead singer of the Partridge Family, a made-for-TV pop group that spawned a number of Top 10 hits including “I Think I Love You” (1970), which went to No. 1. The show was hugely popular for several years, and Patridge Family albums sold millions of copies, especially among pre-teens like me and my friends.

Cassidy continued to act and sing throughout his adult life, but he never achieved the same level of success as he had when he was playing Keith Partridge.

And now he has revealed that he has dementia. He struggled with alcohol abuse for years, but went into rehab. Then he forgot the lyrics at a show and didn’t want fans to think he had relapsed. So he decided to tell them the truth.

His mom, Evelyn Ward, had Alzheimer’s.

I’m very sad. More than I can say.

Here he is singing, “I Think I Love You.” Girls used to scream so much when he performed that no one could hear the music.

Alzheimer’s Costs Will Bankrupt American Safety Net, Says Association

So today the Alzheimer’s Association released its 2016 report on the disease, and the news doesn’t look good. As reported by CNN and Forbes, we can expect that by 2015, the number of Americans 65 and up with Alzheimer’s will reach 7.1 million; that is an increase of nearly 40 percent from 5.2 million who had it in 2016. Jump forward to 2050, and the view is even bleaker: Probably 13.8 million Americans will have Alzheimer’s, nearly triple the rate of today.

Why the soaring rise? Americans are living into their 80s and beyond, and the older you get, the greater your risk of contracting Alzheimer’s and other forms of dementia.

There is no cure for the disease. No treatment. No early intervention. Gulp.

What we have on our hands is a crisis, Continue Reading

Spend Money on Alzheimer’s, President-elect Trump

I haven’t posted here since October. I got kind of busy working a regular job and teaching an extra course and writing textbook material on the side. Oh, and my candidate won the popular vote by almost 3 million votes, but not the electoral college, so she and her brilliant plan to end Alzheimer’s went down the drain. That defeat really got me.

What was her brilliant plan? You probably don’t know about it because it was never brought up in the debates. The media didn’t cover it. Everyone was too busy writing about Hillary’s e-mails from the early 2000s, instead of focusing on the candidate’s actual platform. Said platform = $2 billion a year for Alzheimer’s and related disorders, additional Medicare investment for planning and treatment for patients, commitment to finding a cure by 2025.

Are you gutted by her loss, now that you know about what she was actually prepared to do to combat the disease? Join the club.

The, uh, man who is going to be the president of the United States could do us a solid and get behind Alzheimer’s research in a yuuge way. As we all know, his father, Fred, had Alzheimer’s, and the Donald J. Trump Foundation gave $9,000 to Alzheimer’s foundations in 2010, which was something. I mean, it was nothing, but, you know, it shows that the wheels are turning in there. Which makes me think that somebody could just give the president-elect a push and instruct him on how to make a real difference. I certainly can. Here goes:

#1) Steal Hillary’s plan. It’s right there on her website. No one will notice because nobody paid it any attention during the election. This is one time that plagiarizing won’t get you in trouble, Donald & family.

#2) Bully Congress and the Senate into funding it. Don’t change your mind. Make this your issue. Put your brand all over it. “Fred’s Plan.” That has a nice ring.

#3) Let the plan do its work and in just a few years maybe, just maybe, we’ll see a cure. And you will have done something to truly make America great.

Where the U.S. Presidential Candidates Stand on Alzheimer’s Research

Last night’s presidential debate was heavy on vitriol, insults and threats but managed to address a few of the issues that this nation faces. Unfortunately, confronting the Alzheimer’s epidemic wasn’t one of them.

Still, we do have information on the two candidates’positions on funding for Alzheimer’s research. Donal tRump says that he strongly supports funding it–“It’s a total top priority for me“–but does not offer specifics. The Republican platform does advocate for research for several diseases, including Alzheimer’s.

Hillary Clinton has said that, if elected president, she would dedicate $2 billion per year over a decade to promote a cure for Alzheimer’s, Bloomberg reports. On December 22, 2015, in Iowa, Clinton announced a plan to cure the disease by 2025:

Alzheimer’s is the sixth leading cause of death right now in our country. For every other of the Top 10 causes of death, we have treatments, we have means of prevention—we even have some cures. But for Alzheimer’s, we have no treatment, no prevention and no cure. So for me, the bottom line is if we’re the kind of nation that cares for its citizens and supports families, respects our elders and takes care of our neighbors, then we’ve got work to do. And we need to do better when it comes to diseases like Alzheimer’s

The plan is meant to steam an “epidemic that could single-handedly crush Medicare, Medicaid,” says a neurologist who was featured at the Iowas event, adding that Alzheimer’s is “an unmet medical need of the greatest type.”

Clinton’s website details her plan, including:

  •  commit to preventing, effectively treating and making a cure possible for Alzheimer’s disease by 2025;
  •  invest $2 billion a year in research for Alzheimer’s and related disorders, which is the level leading researchers have determined is necessary to prevent and effectively treat Alzheimer’s and make a cure possible by 2025, and which is higher than the $936 million appropriated for FY 2016 and $1.4 billion proposed for FY 2017;
  •  make sure that funding is reliable and consistent so researchers can work steadily toward effective treatment;
  •  appoint the most qualified research and health experts possible to oversee this ambitious initiative;
  •  make it easier for families and individuals with Alzheimer’s to get the care they need by having Medicare cover comprehensive Alzheimer’s care-planning sessions and the cost of properly documenting every diagnosis and care plan; and
  •  help protect loved ones who wander by reauthorizing the Missing Alzheimer’s Disease Patient Alert Program to assist in finding individuals who are reported missing.

Read more about Clinton’s plan here.

I’m a details person. I’m with her.

Vote for Alzheimer’s Question to Be Included in Presidential Debate!

With just a few hours to go before the second U.S. presidential debate, you can add your vote for Alzheimer’s to be added to the debate questions.

“What’s your plan to tackle the large public health crisis, Alzheimer’s disease?”

Go to Open Debate and vote now!

link: https://presidentialopenquestions.com/questions/6990/vote/

%d bloggers like this: