Author Archives: Joy Johnston

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About Joy Johnston

Joy Johnston is an experienced digital journalist and award-winning author. The Reluctant Caregiver, her collection of essays on caregiving, received a gold medal at the 2018 Independent Publisher Book Awards. She received the 2015 Rick Bragg Prize for Nonfiction from the Atlanta Writers Club. Her father’s death from Alzheimer’s complications in 2011 inspired “The Memories Project” blog, which was featured on NPR. She is an Alzheimer's awareness and caregiver advocate.
February 12, 2024 · 8:00 am

Study explores link between vision issues and Alzheimer’s disease

A recent study published in The Lancet takes a closer look at a specific vision issue that previous research suggests has a link to Alzheimer’s disease.

The new meta analysis reviewed previous research studies on posterior cortical atrophy. The rare condition causes damage to an area of the brain that results in visual impairment. According to the Alzheimer’s Association, symptoms can include difficulty in “judging distances, distinguishing between moving objects and stationary objects, inability to perceive more than one object at a time, disorientation, and difficulty maneuvering, identifying, and using tools or common objects.” Other symptoms can include hallucinations, and difficulty in performing tasks like spelling and math problems. In the latter stages, memory can be impacted.

Because of the overlapping symptoms of posterior cortical atrophy and Alzheimer’s, there’s ongoing clinical debate as to whether it should be considered a form of Alzheimer’s disease or a distinct disease, according to the Alzheimer’s Association.

The new study “found a strong association between posterior cortical atrophy syndrome and Alzheimer’s disease neuropathology” and “emphasize the importance of Alzheimer’s disease biomarker testing
as part of the diagnostic assessment of individuals with posterior cortical atrophy.” Medical News Today reported that among the study findings, “94% of study participants with posterior cortical atrophy also had Alzheimer’s disease pathology.”

It’s important to note that according to the Alzheimer’s Association, misdiagnosis of posterior cortical atrophy is common as most people would first go to their ophthalmologist if concerned about changes in vision. Those who are experiencing vision issues that persist and who are concerned about their risk of Alzheimer’s disease should seek further testing.

While there’s no specific treatment for posterior cortical atrophy, understanding its potential connection to Alzheimer’s could lead to an earlier diagnosis of the latter. Most of the newer Alzheimer’s drugs on the market are designed for those in the early stages of the disease, so diagnosis timing is critical.

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February 5, 2024 · 8:00 am

Controversial Alzheimer’s drug Aduhelm to be discontinued by Biogen

The rocky road that the Alzheimer’s drug Aduhelm experienced on its way to FDA approval was considered a hard-fought victory by proponents, but skeptics and critics may feel redeemed as Biogen announced Jan. 31 that it will discontinue production and research of the controversial drug.

Biogen’s announcement to abandon Aduhelm comes just two and a half years after the drug received accelerated approval from the FDA in 2021. The Alzheimer’s Association and other advocacy groups had urged the FDA to approve Aduhelm despite underwhelming benefits demonstrated in trials and concerning side effects such as brain bleeds and swelling associated with a condition known as ARIA. A congressional investigation found that the FDA’s approval process of Aduhelm was “rife with irregularities.”

While a disappointing outcome, there will be minimal impact, as Aduhelm was only being used by approximately 2,500 patients worldwide, according to NBC News. Why such a low number? The high cost (initially set at $56,000 annually by Biogen), Medicare’s hesitancy to cover treatment, and the intravenous delivery requirement were significant roadblocks.

In its response to the news, the Alzheimer’s Association said that Aduhelm gave hope to millions and helped pave the way for new medications to treat the disease, such as Leqembi, which has been approved by the FDA and remains on the market.

The frustrating and disappointing journey of Aduhelm should be viewed as a cautionary tale for all of us who yearn for a legitimate, effective treatment for Alzheimer’s and other dementias. The pharmaceutical industry responsible for developing innovative treatments are driven by profit and the demands of investors. The FDA’s questionable approval process of Aduhelm also didn’t appear to put patient safety first. At least four deaths were reported among those taking Aduhelm, though it was unclear if the drug played any role.

As I wrote at the time of the FDA’s accelerated approval of Aduhelm “It has been a long wait, and that is why the drug’s approval has been met with a mixture of hope and skepticism.” When it comes to future treatments for Alzheimer’s, take time to do your own research, talk to your doctor, and take a realistic look at the pros and cons to make an informed decision.

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January 29, 2024 · 8:00 am

Accessible writing for those with dementia can benefit us all

Dementia can make many daily tasks difficult, if not impossible. One of those tasks is reading. My father was an avid reader throughout his life so as his dementia progressed, his one true hobby and passion in life was rudely stolen from him.

Reading skills are necessary to navigate daily life beyond reading for pleasure. Being able to interpret signs, recipes, instruction manuals, etc. all take various levels of reading comprehension. Is there a way to write that can make it easier for those with dementia to comprehend?

Innovations in Dementia has released new guidelines on accessible writing for people with dementia. It’s an insightful and useful manual offering real world examples and explaining the whys behind the recommendations. It’s written with a good dose of humor, which is hard to do with a style guide! Everything from font choice and size to page layout and navigation and word choice are covered in the manual.

Researchers found through surveys that many of the recommendations on how to make writing clearer for those with dementia were also useful for those without dementia. The guide points out some similarities in reading challenges for those with dementia and those with dyslexia. Many of us find ourselves increasingly distracted and overwhelmed by the information flooding our minds on a daily basis. If you are familiar with the concept of “smart brevity” that powers the concise writing style used by Axios, you may see some similarities with the clear and direct writing style recommended in the writing for those with dementia guide.

Recently I read a book, Writing for Busy Readers, that I found insightful in how we can all improve our written communication to express ourselves more clearly and be understood by others. From corporate boardrooms to schools, there are opportunities each day to express ourselves more effectively.

Communicating in a way that is more accessible to those with dementia could benefit us all.

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January 22, 2024 · 8:00 am

Can robots help those with dementia engage with past and present?

Social robots have been met with an understandable level of skepticism by elder care advocates. Can generative AI take such technology to the next level? A recent Wired article highlighted interesting developments in this field. Instead of focusing on robots substituting for human companionship or serving as a virtual caretaker, a group of researchers are developing robots “for the soul.”

One group that is being targeted for this technology designed to spark sensations and experiences are those with dementia, with technology meeting them where they are, whether that is surreal or relived memories. One example cited in the article is a robot playing birdsong that prompts an introverted woman with dementia to mimic a bird and speak about her love of birds. Another product that has been created is a pillow with panels that can be personalized to one’s life experience. When a panel is touched, a familiar sound is played. For example, if I was programming this for my father I would include a rendition of Danny Boy, my father’s favorite song. I might include the sounds of a ship, because my father loved ships.

Most of the article focuses on the development of QT, a chatty robot being tested at a memory care center. The technology has a ways to go, but one of the interesting developments is how the robot can spark conversations between residents and visitors. Encouraging such interactions can have a positive impact on all involved.

While I don’t envision a flood of robots caring for the elder population anytime soon, assistive technology is rapidly developing. Fall detection products are commonplace now, and proved to be an essential tool when caring for my mother. Smart, connected devices like the Amazon Echo Show and the Alexa Emergency Assist service keep busy caregivers connected to their elder loved ones, allowing them to monitor virtually. These products provide long-distance caregivers like I was with some peace of mind.

As an Amazon Associate I earn from qualifying purchases.

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January 15, 2024 · 8:00 am

Keeping your loved ones with dementia warm and safe during winter weather

The new year has started off with a blast of winter weather that is impacting a large portion of the U.S. The frigid temperatures are a sobering reminder to take special precautions if you are caring for someone with dementia.

Each year, cases are reported of those with dementia wandering away from home and dying from exposure during the winter. My dad was a dementia wanderer, so these tragic cases hit close to home for me. There are several things to keep in mind when caring for loved ones with dementia on top of normal winter weather safety tips.

Creative Carer had a Facebook post this past week that offered excellent tips on how she kept her mother warm and comfortable during the winter. Some tips to keep in mind:

  • Depending upon the stage of the disease, your loved one may not be able to accurately communicate if they are comfortable temperature-wise. It’s important to be hands-on and monitor for signs of discomfort.
  • As Creative Carer points out, pay special attention to the extremities during cold weather.
  • Think about smart layers. A fidget blanket could serve dual purposes, by occupying restless hands while keeping the body warm. Be cautious about bundling with too many layers of clothes, as it could make it difficult to use the restroom and restrict movement.
  • When severe winter weather limits outdoor activities, make plans to keep loved ones occupied indoors. Restlessness can lead to wandering attempts.
  • Don’t forget about bath time and take extra precautious to keep your loved one warm and comfortable.
  • Knowing your loved one’s preferences before they developed dementia can serve as a guide to maintaining comfort even once they become non-verbal. My father didn’t like things around his neck, as it made him feel like he was being strangled, so scarves would not have been a good choice for him. However, Dad liked wearing hats, so that would have been acceptable.

I hope you and your loved ones stay safe during this winter season.

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January 6, 2024 · 3:08 pm

New year, new opportunities for caregivers

Happy New Year! I hope you and your loved ones had a good holiday season. While we enter another year fraught with tension on many fronts, one way to harness anxiety is by focusing on positive actions you can take to make a difference.

Such actions can come in many forms. Maybe this is the year you finally join a caregiver support group. It’s an election year so perhaps you join forces with a group like Caring Across Generations and their campaign for paid leave for family caregivers. Have you thought about your end-of-life care wishes and do you know the wishes of your loved ones? Make it a priority this year to document these choices in a form that’s legal where you reside.

Perhaps you or a family member have been diagnosed with Alzheimer’s disease or another form of dementia and you are seeking trusted information. Consider an excellent community resource like AlzAuthors, where you can read books from dementia caregivers, medical professionals, and those who are living with dementia. That includes my award-winning book, The Reluctant Caregiver.

If you’d like to get involved in Alzheimer’s research, explore the Alzheimer’s Association TrialMatch. On that note, the Center for Information and Study on Clinical Research Participation (CISCRP) is seeking individuals age 65+ living in the U.S. diagnosed with mild Alzheimer’s and/or their caregivers to participate in a virtual interview project. Note that CISCRP is not recruiting volunteers for a clinical trial, but rather to learn from patients how to best create a clinical trial that addresses the unique needs of individuals with Alzheimer’s. For more information about the interview project, please contact research associate Madeline Heaney at mheaney@ciscrp.org or call 617-725-2750 ext. 416.

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December 24, 2023 · 9:00 am

Happy Holidays

Wishing you and your family a peaceful and restful holiday season. The cats managed to negotiate with Santa Claus and get a gift early. I would love to be a cat with my very own soft, cozy house for endless naps!

For those grieving this holiday season, I fully understand and send you supportive and healing energy.

If you need last-minute gifts, you can get the e-book version of my award-winning personal essay collection, The Reluctant Caregiver, for just 99 cents if you purchase through the Smashwords 2023 End of Year Sale. The deal is available through Jan. 1, 2024. For the kids, you can grab the digital version of my children’s book, Slow Dog, for $2.99 on Amazon Kindle.

If you are feeling a bit sad today, I hope this puts a smile on your face!

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December 20, 2023 · 11:27 am

Marking 12 years since Dad’s death

Today marks 12 years since my father died.

The years following his death have been tough, both on a personal and global level. I am grateful for having found such an amazing community of dementia caregivers and advocates who are tirelessly working to gain better resources and support. No one welcomes a diagnosis of Alzheimer’s or other forms of dementia, but my family’s experience has opened my eyes to challenges in our health care system that I otherwise would not have known about.

I began The Memories Project blog in honor of my father and will continue to advocate for better dementia care treatment and family caregiver support.

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December 18, 2023 · 8:00 am

Honoring departed loved ones during the holidays

On December 20, I will mark the 12th anniversary of my father’s death. Losing a loved one during the holiday season can usher in a mix of grief and nostalgia during subsequent holidays. There’s also a group of people who are marking their first holiday after the passing of their loved one.

Each person processes grief differently, and each person will have to decide what feels right when marking the holidays without their loved one. Over time, I’ve found the sharp pangs of recent loss wane some, replaced by a more generalized sadness.

Care Dimensions posted a helpful list of suggestions on how to remember a departed loved one during the holidays. I have found playing their favorite music or watching their favorite films can be a positive way to connect with those who have passed. I also like to light a candle and set aside dedicated time to recognize departed loved ones in the memorial areas I have both inside my home and in my garden.

You can read more about how I dealt with grief in my award-winning personal essay collection, The Reluctant Caregiver. You can get a digital copy for just 99 cents if you purchase through the Smashwords 2023 End of Year Sale.

Image by Chantelle Thompson from Pixabay.

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December 11, 2023 · 8:00 am

The gift of having difficult conversations

This holiday season, one of the best gifts you can give the caregivers in your life as well as those nearing the end of their lives is the space and attention to have difficult conversations.

This includes not only end-of-life conversations but challenging family situations that need to be addressed. Perhaps there’s a caregiver in your family or friend circles that could use more support. If we’ve learned anything over the last few years of tremendous loss of life from the pandemic, it’s that we may not have the time we think to work through difficult issues with our loved ones. Now is the time to be proactive.

I was reminded of this while watching the Peacock TV series, “The Gentle Art of Swedish Death Cleaning.” This isn’t normally the type of show I would watch but in episode 2, a woman with terminal cancer is featured. In fact, the woman was quite organized and she didn’t need that much help in downsizing. Beyond practical matters, she was dealing with challenges connecting with loved ones as she neared the end of her life. As one of the death cleaners proclaims, she needs “death cleaning of her soul,” which is an empowering concept that they help her fulfill.

Can you facilitate that process for yourself or someone dear in your life? What a meaningful holiday gift that would be.

Photo by freestocks on Unsplash.

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