Tag Archives: alzheimer’s association

Supporting Alzheimer’s research via trial participation

Louis Reed/Pixabay

While a cure or effective treatment for Alzheimer’s continues to remain elusive, there have been promising research developments this year. Recently, the results of a drug trial found that lecanemab helped to slow the progression of Alzheimer’s.

These breakthroughs wouldn’t happen without trial participants. It’s vital that researchers have access to a sufficient pool of volunteers. There are a variety of ways people can participate in Alzheimer’s research and you don’t have to have a specific diagnosis or be a certain age to participate in some programs. I take a battery of online brain tests and answer a health questionnaire a few times per year. Other areas of research may require in-person interviews, a blood draw, following a specific diet or taking medication.

Participating in a drug trial can come with risks, such as side effects from the medication. For example, aducanumab led to brain bleeding or swelling in 41 percent of clinical trial participants.

Study participants are closely monitored, so side effects are documented and treated quickly. Those willing to take this risk help determine a drug’s safety profile and whether a drug’s benefit outweighs its side effects.

Another important point to remember when it comes to drug trials is that there is typically a group receiving the trial drug and another group receiving a placebo, but “blind” trials don’t inform participants which one they are receiving.

If you are interested in learning more about participating in Alzheimer’s research, visit TrialMatch from the Alzheimer’s Association and the Brain Health Registry.

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2021 Alzheimer’s disease facts and figures

While always a sobering overview, I believe it is important to review the annual analysis that the Alzheimer’s Association releases.

READ: 2021 Alzheimer’s disease facts and figures

Some important takeaways:

  • More than 6 millions Americans are living with Alzheimer’s
  • Over 11 million Americans provide unpaid care for those with Alzheimer’s and other dementias
  • 1 in 3 American seniors die with Alzheimer’s or other dementia
  • This year, Alzheimer’s and other dementias will cost the nation $355 billion
  • The value of the care unpaid Alzheimer’s caregivers provide is $257 billion

One other important statistic to note is the racial disparity in care. Discrimination in the health care setting can prevent or delay people getting the care they need. Half of Black Americans report such discrimination. Over 40 percent of Native Americans reported discrimination. Over a third of Hispanic and Asian Americans reported discrimination. I would also add to this the discrimination that women face in healthcare settings. Discrimination can take many forms, including a doctor not taking complaints of pain as seriously and assuming a symptom is emotional vs. physical in nature. I remember my own mother suffering at the hands of doctors who did not take her cancer pain seriously, instead assuming she was drug seeking.

As caregivers, we must be vocal and tireless advocates when faced with such discrimination. Don’t be afraid to ask for a different doctor if you are uncomfortable or dissatisfied with the care being provided. I’ve read many accounts from adult children who sought treatment for their elder parents with signs of dementia but the doctors shrugged off symptoms as the elder was able to present well for the duration of the appointment. Be persistent. While there is no miracle treatment for Alzheimer’s or other dementias, there are medications and treatments which may help in the earlier stages. That is why receiving a correct and timely diagnosis is crucial.

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Review the 2020 Alzheimer’s Disease Facts and Figures

The Alzheimer’s Association released their annual report around the time the coronavirus pandemic was ramping up, but I did not want to overlook the latest findings. I thought it was especially appropriate to post this today, on what would have been my father’s 88th birthday.

Here are the main takeaways from the 2020 Alzheimer’s Disease Facts and Figures report:

  • Alzheimer’s is the sixth leading cause of death in the U.S. 1 in 3 seniors die with Alzheimer’s or another dementia. The death rate from Alzheimer’s has skyrocketed. Between 2000 and 2018, the number of deaths from Alzheimer’s disease has more than doubled, increasing 146%.
  • More than 5 million Americans live with Alzheimer’s disease. Women make up two-thirds of that number; African-Americans are about twice as likely to be diagnosed with Alzheimer’s or other dementias compared to whites in the same age group; Hispanics are about 1.5 times as likely to develop Alzheimer’s or other dementias compared to whites in the same age group.
  • Unless significant medical breakthroughs are made, by 2050, the number of Americans age 65 and older with Alzheimer’s dementia may grow to a projected 13.8 million.
  • 16 million unpaid dementia caregivers provide care valued at $244 billion annually. One in three caregivers are 65 and over, and two-thirds are women. One-quarter of dementia caregivers belong to the “sandwich generation,” caring for both an aging parent and minor children.
  • The cost of Alzheimer’s care to the nation is staggering. In 2020 alone, Alzheimer’s and other dementias will cost the nation $305 billion. What’s even more sobering is that half of primary care physicians believe the American healthcare system is not prepared for the growing number of those with Alzheimer’s and other dementias.

While these reports highlight the challenges we face in providing care for our loved ones with Alzheimer’s and other dementias, the Alzheimer’s Association proposes an action plan focused on education and recruitment to build up a corps of geriatric providers who understand the unique challenges that those with dementia and their caregivers face. The Alzheimer’s Association also encourages greater funding in the areas of rural healthcare and telemedicine.

2020 alz report


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Latest Alzheimer’s report demands action

The Alzheimer’s Association released its 2019 Alzheimer’s Disease Facts and Figures report, and the statistics are sobering. Almost 6 million Americans are living with Alzheimer’s disease, and it is the sixth-leading cause of death in the U.S.

On the caregiving front, more than 16 million Americans are providing unpaid care for people with Alzheimer’s and other dementias. The value of their work is approximately $234 billion.

While the numbers are grim, the 2019 report makes crystal clear that we need bipartisan support at the federal level in addressing what is a health care crisis. Alzheimer’s disease is so costly, yet lags in research funds. Alzheimer’s caregivers need far greater support, both financially and in respite care.

Read the full report on the Alzheimer’s Association website.

alz assoc 2019 report

(Infographic courtesy of the Alzheimer’s Association)

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National Caregiver Month: Honor a caregiver

In addition to being National Alzheimer’s Disease Awareness Month, November is National Caregiver Month. It’s only fitting for those of us who have cared for a loved one with dementia that these two recognition events occur in the same month.

While caregiving, both family and professional, needs much more recognition than just a designated month, this is a good time to get the conversation started about how important caregiving is to our society.

My mom, who was a wonderful caregiver for my father who had Alzheimer's.

My mom, who was a wonderful caregiver for my father who had Alzheimer’s.

The Alzheimer’s Association is marking the month by allowing people to write a personal tribute on their website.

I’m marking the month by making a visit to my mother, who has been dealing with some recent health setbacks. Caregiving in action!

To all of you in the blogosphere who have shared your caregiving stories, thank you. Together we can raise awareness and help each other through this challenging journey that is always full of surprises.

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My story will appear in “Chicken Soup for the Soul Living with Alzheimer’s & Other Dementias”

I am very excited to announce that a story that I wrote about my father, called “French Toast,” will appear in a special edition of the popular “Chicken Soup for the Soul” series. This edition features stories about living with Alzheimer’s and other dementias and is a joint project with the Alzheimer’s Association. All royalties from this special edition will go directly to the Alzheimer’s Association. The book will be released on April 22, 2014.

CSS Living with Alzheimer's & Other Dementias

I am thrilled to be a part of this upcoming book, especially for a publisher as popular and well-respected as the “Chicken Soup for the Soul” folks. From thousands of submissions, 101 stories were chosen to appear in the book. I look forward to reading all of the inspirational stories.

If you’re wondering how I came about submitting my story, it was really just by chance. I was doing my daily “looking for paid writing gigs” web search and was on the Work-at-Home Moms website. Now I’m not a mom (unless you count the pets) but I find that their website sometimes posts opportunities I don’t see elsewhere. It was on their website that I saw the “Chicken Soup for the Soul” callout for Alzheimer’s and dementia stories. I said to myself, “Why not?” I submitted two stories: a depressing one and a funny one. The funny one was accepted. 🙂

One of the main goals I had in mind when starting The Memories Project blog was to raise awareness, not just for Alzheimer’s but for family caregivers as well. I’ve virtually met so many wonderful people through my modest but loyal following. The dialogue we have has educated and inspired me and lifted my spirits. Yet I know so many others are struggling silently and I hope by being able to get out the word on a larger platform, more people can get the support they need.

To prepare for the upcoming release of the book, I’ve added a couple of pages to my blog: media appearances and publishing credits. If you or someone you know would be interested in a copy of the book, an interview or a guest blog post, feel free to contact me directly at joyjohnston.writer@gmail.com.


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Walking for Dad on The Longest Day

This year I actually have the opportunity to participate in the Alzheimer’s Association campaign, The Longest Day. Since this is the day it stays light the longest, today is the perfect opportunity to shine a light on Alzheimer’s awareness from dawn to dusk. Last year I was at work so I couldn’t fully participate, but I had no excuses this year!

Walking the Beltline in Atlanta for Dad on The Longest Day 2013.

Walking the Beltline in Atlanta for Dad on The Longest Day 2013.

People do all sorts of things to honor their loved ones for The Longest Day campaign. People hike, run, swim, ride a bike, just anything to get out there and spread awareness. I chose to walk because Dad loved to take long walks and I do too! I decided to walk the Beltline, which is an exciting project here in Atlanta that is repurposing the long abandoned railroad tracks that still exist around the city and converting them into a walk/run/cycling trail that links up many intown neighborhoods. I was skeptical about the project at first I have to admit, but now that I have experienced one of the first phases of the project, I feel like it’s coming along nicely.

Piper the Beltline Kitty came out to greet me on my walk for Dad!

Piper the Beltline Kitty came out to greet me on my walk for Dad!

Today I walked the Eastside Trail from Piedmont Park in Midtown to Inman Park. Driving that route is almost a five mile trek. But thanks to the Beltline, you can walk there in half that distance. I made it to my destination in about an hour and am writing up this blog post at a neighborhood coffee shop. I’m going to keep spreading Alzheimer’s awareness throughout the day by staying active on social media and doing more walking!

I would love to hear how others are honoring their loved ones and spreading Alzheimer’s Awareness on The Longest Day. To follow the action on Twitter, use the hashtag #thelongestday.

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25 years of Alzheimer’s advocacy in America

The Alzheimer’s Association Advocacy Forum will host its 25th national conference this year in Washington, D.C. from April 22-24. Check out this timeline of Alzheimer’s advocacy over the last quarter of a century. So many people have come together and broadened awareness of this terrible disease over the last 25 years. Certainly I know most advocates would hope we would be further along with treatment options or even, daresay, a cure, but awareness has grown greatly. Unfortunately, as Alzheimer’s cases have grown in numbers, the U.S. and the world have had to take notice and take action.


I hope to get to attend this year. For those on a budget, registration fees are being waived in honor of the 25th anniversary. You can find out more about the event and the agenda details on the registration page.

Sometimes, caregivers and family members can feel so alone, so isolated in their family’s struggle with Alzheimer’s. Meeting others who share similar experiences can be a moving, yet rewarding experience.

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The personal side of the Alzheimer’s awareness movement

The Alzheimer’s Association Advocacy Forum is taking place this week in Washington, D.C. For those attending and promoting Alzheimer’s awareness, a big thank you. Alzheimer’s is quickly becoming a national health crisis, and we must come together as a nation to address it.

For most of us, the battle against Alzheimer’s is very personal. For me, it’s the reason why I started The Memories Project. My dad was not a celebrity or a hometown hero. He was just an average guy.

But he was my father, and he did not deserve to suffer from Alzheimer’s. No one deserves to suffer from this terrible disease.

I can’t be in the nation’s capital to be a part of the forum, but if I had the opportunity to share a personal memory of how our family was touched by Alzheimer’s, I would share this snapshot in time, my last visit home when my father still lived there:

My dad was restless and paced the living room, while trying to get the zipper on his jacket to work. Suddenly, he turned around and looked straight at my mom, who was sitting on the couch next to me. He asked with a tone of distress, “Where’s Jane?”

My mom is Jane. My parents were married for 40 years.

My mom’s face crumpled internally, the words striking her skin as painfully as physical blows. She answered in an even tone, “I’m right here.”

There were many other painful memories that Alzheimer’s created for our family, but this one stands out starkly in my mind and makes my heart hurt. It was difficult to know who to have more sympathy for, my dad suffering from advanced memory loss or my mom forced to deal with the fact that her partner of 40 years could no longer remember who she was.

This is why I am an advocate for Alzheimer’s Awareness.

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