The Alzheimer’s Association had an interesting blog post recently about the issue of cognitive impairment in the workplace. As the U.S. population ages and older people by financial necessity or personal choice are staying in the workforce longer, we need policies to address this sensitive issue.
While modern workplaces, to be compliant with the Americans with Disabilities Act. have evolved over time to better accommodate workers with a variety of physical disabilities and conditions like autism and dyslexia, it seems like similar considerations for those with dementia are a work in progress.
Because dementia is an umbrella term that includes a variety of diseases from Alzheimer’s to frontotemporal dementia (FTD) each with their own unique set of symptoms and behaviors, creating a comprehensive policy will be difficult. The Alzheimer’s Association includes recommendations in their blog post:
Training: Human resources need to be educated on signs of dementia, which can present symptoms that may be mistaken for conditions like substance abuse or depression.
Accommodating: From flexible schedules to technology enhancements, employers should consider how to assist workers with dementia so they can remain productive and engaged.
Support: There will come a time when a person with cognitive decline will progress to the point where they need to retire. Companies should do their best to allow for a dignified exit that leaves the worker feeling some agency in the decision and provide the worker’s family with options for support, such as disability and retirement benefits.
Hopefully with greater awareness, employers in conjunction with medical experts and dementia awareness advocates will create sensible and sensitive policies to address this important issue.
One of the tasks that has been on my to-do list since turning 50 is registering for GeneMatch, a program led by the Banner Alzheimer’s Institute. The program uses genetic testing to recruit people age 50-90 for Alzheimer’s prevention studies.
After what seemed like little activity for years when it comes to treatment options for Alzheimer’s and other dementias, in the past few years, new drug treatments have emerged that are offering some hope. These new medications have also been accompanied by controversy, as I’ve written before about Leqembi and Aduhelm. But one thing that isn’t in dispute is that effective treatments cannot be developed without a sufficient amount of study participants. According to the Alzheimer’s Prevention Registry, 80 percent of studies are delayed because of lack of qualified participants.
Joining GeneMatch is simple and free. Those who meet the basic requirements will be sent a cheek swab test that can be completed in the comfort of your home, and then returned in a postage-paid package. One thing to keep in mind is that you won’t necessarily learn the results of the genetic testing, but some studies may offer the opportunity to learn APOE results. Since I’ve had genetic testing done previously, I already know I carry one copy of the APOE e4 gene, which increases my risk for Alzheimer’s disease. With the disease appearing on both sides of my family tree, I’m eager to do whatever I can to find effective treatment.
For caregiver tips, check out my Caregiver Product Recommendations page, with a list of products that I used while caring for my parents.
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Elaine shares a tender reminder for all caregivers, past, present, and future: don’t forget your self-worth and be kind and forgiving of yourself when making tough decisions as a caregiver. Much time has passed since I cared for my parents, but I still feel pangs of guilt over some of the decisions I made.
I read another post recently about grief and guilt and that some researchers feel that the sharp pain of guilt may be the way some people attempt to maintain a strong emotional connection to their departed loved ones. I think there is some truth in this from my experience. Certainly the pain of guilt can overshadow more positive memories. Over time, we can make a conscious effort to let go of the guilt and accept the new relationship we have with those who have departed.
A poem I wrote about my father, is included in the collection. “At the Crossroads” is about the week I spent with my father in a hospital in Albuquerque in the last month of his life. He was in a medically induced coma so I spent many long hours looking out the window of his room.
I’ve found that beyond personal essays, writing poems about my caregiving experiences has been healing for me. Writing poems encourages me to distill memories using concise language and experiment with perspective and voice.
I had a chance to review an early copy of the book and was so moved by the poems people wrote about the dementia experience, from a myriad of perspectives.
To celebrate the launch of the collection, AlzAuthors is hosting a reading on Monday, June 3 at 4 p.m. ET. I’ll be participating, so I hope to see you there. If you are not able to attend live, the session will be recorded. You can access the Zoom link here..
CNN’s Dr. Sanjay Gupta has reported on Alzheimer’s and other dementias over the years, but recently he became the subject as he explored his own dementia risk, knowing his family history with the disease. The takeaways were enlightening, though it may be some time before such tests are widely available to the general public and covered by insurance.
Gupta is not an ordinary patient; he is a brain surgeon. Yet in his report he shares his surprise about what he learned about his own brain during a “preventative neurology” visit at the Institute for Neurodegenerative Diseases of Florida. While there he went through a battery of tests: blood, saliva to check oral health, genetic testing for the APOE4 gene, body composition, and a series of cognitive tests. In regards to the intense series of cognitive tests, Gupta said, “I felt like my brain was being cross-examined by a very skilled prosecutor.”
Dr. Richard Isaacson conducted the tests on Gupta and came to some interesting conclusions. He said the results suggested Gupta may have undiagnosed dyslexia. He also found a gene mutation that could explain low B12 levels, and suggested that Gupta take supplements to boost his Omega 3 levels. Gupta was surprised to learn about his elevated body inflammation. Isaacson also made recommendations when it comes to Gupta’s exercise regimen.
Of course, the cost of all of these tests aren’t affordable for the average person at this time. To his credit, Isaacson is working on a method to do many of these tests at home for free or at a reasonable cost. I just did a finger prick cholesterol test at home and it was simple and affordable, so I would definitely be interested in similar tests for Alzheimer’s risk. My cholesterol is a bit elevated and as discussed in the CNN report, there is believed to be a connection between high cholesterol and cognitive decline risk, so I’m taking steps to address that, as I know I carry a copy of the APOE4 gene so my Alzheimer’s risk is already elevated.
Not everyone wants to know their dementia risk, and while I think it should be a personal choice, I’m definitely in the camp of wanting as much data as possible. My dad had high cholesterol and took steps to alter his diet, but if he’d known his Alzheimer’s risk, would he have quit smoking sooner? Would it have made a difference? That’s impossible to say, but if there are simple things I can do to reduce my dementia risk, I’m open to considering the recommendations.
Happy Mother’s Day to mothers of all kinds. I will be holding space for all of us whose mothers are no longer here.
On a related note, congratulations to Katie Engelhart, contributing writer for The New York Times Magazine, who won a Pulitzer Prize for Feature Writing for The Mother Who Changed: A Story of Dementia. With compassion and clarity, she shared this family’s complex and fraught journey with dementia. The piece raises important ethical and moral issues that should be discussed.
In case you missed it, I’m sharing again a poem about my mother that was published by The Prose Poem earlier this year. “Her Lists” is my way of coming to terms with some of my mother’s more eccentric qualities. Below is an example of one of her lists for reference.
Recently, Bloomsbury Publishing released a final message from author and dementia awareness advocate Wendy Mitchell, who died earlier this year. I encourage you to watch the video, in which she so eloquently explains her decision to take agency over the end of her life.
In the video, she speaks so poignantly about those with dementia working so hard to present as “normal” in public and the toll that takes on a person over time. This can apply to other conditions as well, such as depression. We could all learn a lesson here, by being more compassionate when encountering others whose struggles may not be readily apparent on the surface.
A new study suggests that the type of work on does over the course of their life could impact their risk of cognitive decline and dementia.
The study, published in Neurology, tracked and analyzed the health and occupational data for 7,000 Norwegians over a roughly 30-year period. The individual’s occupation was categorized by researchers based upon its cognitive demand: for example, a factory worker’s repetitive tasks vs a doctor’s more complex duties. Teacher was the most common occupation in the higher cognitive demand category.
The study found that those with routine jobs were linked to a 66% higher risk of mild cognitive impairment and a 37% greater risk of dementia compared to those with jobs that were more cognitively demanding. As has been found in other studies, higher education offers a cognitive health protective benefit, offsetting some of the negative impact from repetitive jobs.
My father worked as a freight checker most of his life, a physical, blue-collar job that was repetitive in nature. In his later years, he worked as a security guard, which offered little mental stimulation. While my father didn’t have a lot of formal education as an adult, he was self-taught in areas he cared deeply about by being a voracious reader. He read deeply complex topics such as war strategy.
While the study’s findings are interesting, people have lives beyond their career choice. Some people may choose a routine job to pay the bills, so they can save their energy for hobbies such as playing a musical instrument or chess. My job requires a great deal of data analysis, and I also enjoy word puzzles and jigsaw puzzles.
We know that dementia can strike anyone, regardless of occupation. It makes sense to engage in mentally stimulating activity on a routine basis, whether it’s at work or a hobby.
I had a work trip this week that took me to New York City for the day. It just so happened to fall on what would have been my father’s 92nd birthday. It was nice to be able to mark the occasion in the first city my father lived in after immigrating to America.
While it’s been almost 70 years since my father walked the streets of the Big Apple, the city’s nonstop energy remains. I can only imagine what my father felt walking these streets, gazing up at skyscrapers, and being part of a community filled with a wide range of cultures and languages. As a young man with his whole life ahead of him, it must have been exciting and likely a bit overwhelming.
On my flight back home, a couple of strangers struck up a conversation and the topic turned to Alzheimer’s. Both were caring for people with dementia, with the man saying he cared for three gentlemen who were younger than him. I find that the amount of people whose lives have been touched by Alzheimer’s has grown a great deal since my father died in 2011.
A short film by the UK-based Alzheimer’s Society has generated a wide range of strong emotions from those with dementia and their families. In addition to the original video campaign embedded above, there is also an extended cut version and a profile of a couple who faced a heartbreaking FTD diagnosis.
The crux of the criticism comes from the film’s fatalistic point of view, framing dementia as a series of deaths that occur when a person loses the ability to do something they loved or remember something fundamental to their life, such as remembering their child’s name. With these series of “deaths”, one will need an organization for support, which is where the Alzheimer’s Society says it will be there for families impacted by dementia again and again.
George Rook, a patient activist living with dementia, has posted his eloquent rebuke of the film on his blog. It’s garnered a lot of support within the dementia community, and he has since written more posts related to the film that I encourage you to read.
The Guardian also wrote a column about the controversy, with the columnist agreeing that the film is uncomfortable to watch and concluding that “the advert went too far, but that one of the many issues with the public discourse about dementia is that it can be overly sanitised.”
Below is the Twitter/X post from the Alzheimer’s Society which I’m including so you can read the replies. As you can see, the video sparked a passionate discussion from those living with dementia who felt personally offended that they were being portrayed as the living dead when in fact they are living with dementia reasonably well.
In the Alzheimer’s Society response to the video’s controversy, it states the need for a societal wake-up call when it comes to dementia. It’s the leading cause of death in the UK and according to the organization, only 10 percent of people are aware of that sobering fact. I know I was not aware of that statistic.
If you’ve read my book, The Reluctant Caregiver, I think you’ll know my take on the film. While I can understand some may find the tone of the film harsh, I do agree with the need for a wake-up call. That’s why I wrote about the difficult moments in my caregiving experience, even if that has led to some reviews that the book is depressing.
In the US in particular, the financial impact of dementia is something many people are woefully unprepared for as they think Medicare will cover expenses. People don’t fully appreciate the challenges of living in place nor are they prepared for the astronomical cost of memory care. As for the “series of deaths” a person with dementia may experience, there is a real sense of loss when the disease takes away people’s abilities and aspects of their personality. As I wrote in my book, it did feel like an imposter had taken over my dad’s body. When he looked my mother straight in the eye and asked where she was by name, the heartbreak I experienced was worse than when I viewed his body in the morgue.
My mother dealt with the brunt of my father’s dementia. From what my mother, the eternal optimist, told me, there were not many good days. I’m sure she didn’t even share all of the horrific moments, though some she couldn’t hide, like when my father punched my mother in the jaw as she tried to get him ready for bed.
Once he was heavily drugged in the memory care center, his aimless shuffling through the hallways with the lost, vacant stare in his eyes did make him seem like a zombie in some ways. I know some people may find that portrayal offensive, but that was my honest reaction at the time.
I’m encouraged by those with dementia who continue to lead rewarding lives, and if I get the dreaded disease one day I hope I will follow their example. Unfortunately, that was not my family’s experience with the disease. It not only had a dire financial impact but I’m also convinced that the toll of caring for my father played some role in my mother ignoring her own health issues and being diagnosed with stage III colon cancer just six months after his death. I live alone and don’t have children, so for those of us without a support network, thriving with dementia may be a challenge.
We live in polarizing times when we refuse to recognize that multiple things can be true at once. There are some people living well with dementia, and maybe that should be the focus of the Alzheimer’s Society’s next awareness campaign. Kudos to these people and we should all be working towards the goal of improved treatments and better support resources so that living well with dementia becomes the norm and not the exception. But there are also those whose lives, and their family’s lives, are devastated by dementia. Those stories should not be buried because they make some people uncomfortable.
Each person with Alzheimer’s or another form of dementia will experience the disease in their own unique way. So will their families. We should encourage those from across the spectrum of dementia experiences to share their stories, the good, the bad, and the ugly.
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The Memories Project 