Embracing our loved one’s eccentricities

I recently had a poem about my mother’s infamous shopping lists published. You can read “Her Lists” at The Prose Poem.

My mother’s lists were like a look inside her busy bee brain. It may have seemed like an oxymoron, but my mother’s chaotic organization style worked for her. That was fine until I became her caregiver and then I was the one responsible for interpreting her wacky roadmap.

I wrote “Her Lists” during a poetry workshop a few years ago. I tinkered with it just a bit since then, but it mostly came out as is on first draft. If you’ve had challenging caregiving moments that you are trying to work through, engaging with them in a creative process may be helpful. Taking a look at such moments with a different lens may be healing and provide some sense of closure.

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2024 Alzheimer’s Disease Facts and Figures

The 2024 Alzheimer’s Disease Facts and Figures has been released by the Alzheimer’s Association. One major fact that jumped out to me was the topline figure. For years, it’s been over 6 million people in America are living with Alzheimer’s. Now we are at the 7 million threshold.

Here are other major takeaways from the report:

  • 1 in 3 seniors dies with Alzheimer’s or another dementia.
  • Alzheimer’s kills more people than breast cancer and prostate cancer combined.
  • Between 2000 and 2021, deaths from Alzheimer’s have increased by 141 percent.
  • In 2024, Alzheimer’s and other dementias will cost the US $360 billion.
  • That cost would have been even higher if it hadn’t been for the over 11 million Americans who provided unpaid care to people with Alzheimer’s and other dementias.

You can review the entire report at https://www.alz.org/alzheimers-dementia/facts-figures.

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New study sheds new light on cognitive decline’s impact on speech functions

Changes in speech and word recall can be among the earlier signs of cognitive decline. We’ve all experienced this, no matter what the age: “It’s on the tip of my tongue!” While not always a precursor to Alzheimer’s or other forms of dementia, it’s important to recognize changes and talk to your doctor about them.

A recent study, albeit with a small sample size of 125 people, shed new light on what is a frustrating yet common complaint among older adults: difficulty in finding words. Among the findings: “Overall reaction time for word retrieval (controlling for psychomotor slowing) was the best predictor of spontaneous WFD (word finding difficulty) and executive function decline, suggesting processing speed as the key factor, and that verbal reaction time may be an important clinical measure.”

AI software was used to extract data such as speech speed, word variety and pauses in speech, according to The Conversation report. The study participants also completed a series of tasks designed to gauge executive function ability, and the results found a link between age-related decline in executive task ability and speech pace.

The findings are interesting but of course more research will be needed with a larger study group. If confirmed, the findings could help in forming more accurate tests for cognitive decline.

Image created by Microsoft Copilot.

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Being an only child and caregiver to your parents

With my parents before my father moved into a memory care center.

The Wall Street Journal published an article recently about the beginning of an only child boom and its impact on caregiving. As an only child, I could relate all too well to the main subject of the article. I felt overwhelmed many times during my caregiving journey, and felt the crushing weight of making life or death medical decisions on my own.

On the other hand, every time I’ve mentioned the challenges of being an only child and caring for aging parents, I’ve heard from others who had siblings but still felt like only children because their siblings refused to help with caregiving duties for their parents. Or in other cases, siblings would squabble over making decisions in the care of their parents, leading to fractured relationships. So I understand how whether being a small or large family, caregiving comes with its challenges.

One of the people profiled in the article talked about having to make a life-or-death medical decision for their mother while being in another country several thousand miles away. In the comments section, someone inquired why distance would make the decision more difficult. I can speak personally to this, as I was 1,300 miles away when I got a call the morning of Black Friday, with a nurse in rapid-fire speak informing me my dad was crashing and should they engage in life-saving measures or not. The nurse had first tried to reach my mother, but she took sleeping pills and wore ear plugs when sleeping, so she didn’t answer the phone. Now the life and death decision was in my hands.

But it really wasn’t. Over 12 years later, I still struggle with the decision I was forced to make, which was tell the nurse to keep my father alive while I tried to reach my mother. If it had been solely up to me, I would have let my father go. But I couldn’t make that decision for my mother, and I knew she would never forgive me if I had. I eventually got hold of her and my father lived about another month before dying five days before Christmas.

One of the reasons I feel so strongly about paid leave is for those like myself who find all of the parental caregiving duties falling on their shoulders. No one should lose their job because they are caring for a loved one. It’s also why I feel so strongly about respite care, as only children may not have as robust of a support system that can come with larger families.

I enjoyed being an only child and don’t regret the lack of a larger family. But as the article mentions, only children need to be vigilant about building a support system so that when an older parent has a medical emergency, they will have resources in place to help them make informed decisions about medical care, finances, and to lean on for emotional support.

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Wendy Williams diagnosed with FTD, aphasia

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Former talk show host Wendy Williams recently revealed that she has been diagnosed with primary progressive aphasia and frontotemporal dementia (FTD). The update on her medical condition was provided as a new documentary about Williams and her whereabouts since leaving her talk show aired and generated a great deal of controversy.

I watched the documentary, “Where is Wendy Williams?” and while it was difficult to watch her cognitive struggles, a lot of people got an eye-opening education on the varied forms of dementia. While Alzheimer’s has moved more into the public awareness in recent years, dementia variants like FTD are less known and understood. For those who think dementia is just “memory loss” witnessing the symptoms Williams displayed, combined with the aphasia, should raise awareness of the distinct symptoms that dementia variants can present.

FTD can trigger personality-driven changes, with erratic behavior and mood swings. For the former radio personality and talk show host, aphasia is a particularly cruel diagnosis, as it impacts speech and language skills. All of these symptoms are on display in the documentary, further aggravated because of Williams self-medicating with alcohol. Williams was previously diagnosed with Graves’ disease and lymphedema.

The documentary also puts a spotlight on court-appointed guardianships, and how a system supposedly designed to protect the vulnerable can isolate the person and cause further harm. The Williams family feels cut off from providing care for their struggling family member, while those in Williams orbit approved by the guardian seem not equipped to handle such a complex case. There is also the challenge of convincing a loved one that they need help, which is something many families dealing with dementia are all too familiar with.

Actor Bruce Willis has also been diagnosed with FTD and aphasia. I’m grateful that both celebrities have chosen to go public with their dual diagnosis, as it will help raise awareness and hopefully funding for these conditions.

I’m participating in the Smashwords  2024 Read an Ebook Week promotion that runs from March 3-9. During this time, get my award-winning personal essay collection, The Reluctant Caregiver, as well as CBD for Caregivers, for half off.

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Remembering Wendy Mitchell, who shared her dementia experience with candor, compassion

I was saddened to learn that Wendy Mitchell, who so generously and insightfully shared her experience living with dementia through her blog and books, died this week. However, I take solace in knowing that Mitchell left this world in a way that honored the agency she still had over her own life.

I mostly knew Mitchell through her blog, Which me am I today? The blog’s title captures the dementia experience so well. I enjoyed the photos she shared from her sunrise walks, which included gorgeous skies as well as a variety of birds and other animals. Mitchell was dedicated to her nature walks, writing that the “miracle of nature would thin the glue in my head and bring me alive again.” Mitchell shared the full spectrum of the dementia experience, demonstrating that memory impairment does not prevent those with dementia from continuing to feel a wide range of emotions, maintaining a sense of humor, and achieving new milestones.

At the same time, Mitchell was clear-eyed about what the end of the dementia journey looks like for many people, and she was determined to not have her life end that way. She had been making her end of life plans for awhile, consulting with family and getting their blessing. Because assisted dying isn’t a legal option in the UK, Mitchell planned to travel to Switzerland and utilize the services available at Dignitas. But a recent fall in which she spent a week in the hospital derailed those plans. With her mobility limited, Mitchell chose to stop eating and drinking. You can read Mitchell’s final blog post which goes into detail about her decision process. I encourage you to read it, even if you disagree with her choice.

For the record, I support assisted dying and would consider that option for myself. I think it’s a decision for an individual, in consultation with family members, medical providers and spiritual advisers to make, NOT government officials.

Mitchell shared on her blog what she hoped to accomplish by sharing her dementia journey: “What I want is not sympathy. What I want is simply to raise awareness.” Mission accomplished.

Mitchell was a cherished member of AlzAuthors, read their lovely tribute.

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How creating GenAI prompts reminds me of dementia communication

For the past year, I’ve immersed myself in the emerging generative AI technologies. Mostly for my job, but also for my personal curiosity. Every industry is being impacted by AI, including caregiving. If you’ve followed any of the AI discussion, you’ll know that while the technology offers great potential in certain areas, it also can produce errors, which are referred to as “hallucinations.”

Users of these gen AI models are given the responsibility of creating suitable prompts for whatever tasks they are asking the model to complete. There are now people being hired as “prompt engineers” solely for that purpose. The reasoning goes that the better the prompt, the better the execution.

Instead of just typing in a few keywords into a search engine bar, one has to think about a variety of details. There’s a lot of trial and error in the process, with the accompanying frustration and wonder when you get it just right.

This made me think about communicating with someone in the earlier stages of dementia. The person’s communication skills are typically not that impaired early on, but some aspects may be slightly off. The misuse of a word. The incorrect memory recall. The out of left field response. Not understanding a routine request the person’s done many times before.

I remember having conversations with my father during those early stages of the disease and it was disconcerting because our discussion was mostly normal, until it suddenly wasn’t. And that’s how it feels to me working with generative AI technology. It’s accurate a good deal of the time but there’s still something just a bit askew.

If gen AI is characterized as being almost human, we sometimes feel our loved ones with dementia are not the people they once were. Creating AI prompts reminds me to be thoughtful when assembling the building blocks of communication, and how we may be required to reconstruct our typical communication style with our loved ones with dementia, by reframing questions and devising ingenious ways to keep the conversation, and the connection, alive.

The prompt used for the blog post image: “A digital illustration of an adult daughter and her 80-year-old mother with dementia setting at the dining room table, having a conversation with each other, with hearts floating around them.”

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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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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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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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