Category Archives: Awareness & Activism
Policies needed to address cognitive decline in the workplace
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.
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Filed under Awareness & Activism
Study suggests link between shingles, cognitive decline risk
Is it just me, or are you inundated with pharmaceutical ads about shingles? The Shingrix vaccine ad blast is virtually in constant rotation on the streaming channels I watch. At this point, anyone 50 and older should have gotten the message about the threat of shingles as one grows older.
The commercial came on again as I was writing this blog post!
Now that I’ve turned 50, shingles is officially on my radar. I had chicken pox as a kid, so I’m at increased risk. The two-dose Shingrix vaccine is effective, but can trigger adverse reactions so those interested should consult their doctor.
A new study that suggests there could be a link between shingles and cognitive decline.
The latest study conducted by researchers at Brigham and Women’s Hospital analyzed data from three large independent studies that have been collecting data since the mid-1970s and mid-1980s. Researchers determined from their analysis that an episode of shingles was associated with an approximately 20% higher long-term risk of cognitive decline. The risk was greatest for men who are APOE ε4 carriers, a significant genetic risk factor for Alzheimer’s disease.
What could be the link between shingles and cognitive decline? The connection is not fully understood and will require further research, but inflammation may play a role. Vaccination may help reduce the risk of shingles-related cognitive decline, but more research is needed, according to the study.
Even without a potential link to dementia, shingles is a painful condition that can lead to significant, long-term symptoms. But for those of us already at increased genetic risk for Alzheimer’s, understanding how other conditions may trigger cognitive decline is worth monitoring.
For caregiver tips, check out my Caregiver Product Recommendations page, with a list of products that I used while caring for my parents.
As an Amazon Associate I earn from qualifying purchases.
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Filed under Awareness & Activism
Digital estate planning and dementia
Digital estate planning has become an essential part of end of life considerations. In our tech-driven society, you may spend more time and have more information stored in digital form than you do physical form.
As a Gen X member, I’m one of the last generations to have a foothold in both worlds. For example, my diaries from junior high and high school were kept in physical journals, and photos from that time period were physical prints. As an adult I’ve fully embraced technology and have most of my writing and photos, along with my financial and household information, are stored digitally. I will need to select a person comfortable with both physical and digital documents to handle my estate.
There’s no official method when it comes to digital estate planning. 1Password offers a guide with helpful tips. Maintain a list of your digital accounts with access information, and store that information somewhere secure. If you prefer, you can grant access to your online password manager to your digital estate executor. Only the person you choose to manage your digital estate should have access to that information and understand your wishes as to what to do with your accounts, personal writings, etc. Be very clear about what to do with potentially sensitive information that could be hurtful to others if discovered after your death.
Digital estate planning action steps (from Perplexity AI):
- Take Inventory: List all your digital assets and account details.
- Decide Asset Fate: Determine what should happen to each digital asset.
- Appoint Executor: Choose a trusted digital executor.
- Create Digital Will: Document your wishes legally.
- Store Securely: Keep your digital estate plan in a safe and accessible place.
- Update Regularly: Review and update your plan periodically.
- Communicate: Inform your loved ones and executor about your plan.
Also something to consider are any messages, social posts, or works you would like shared after your death. Many social media services allow accounts to be converted to a memorial account. Dementia awareness advocate Wendy Mitchell wrote a final farewell blog post that she instructed her daughters to publish after her death.
Where digital estate planning can get tricky is when a person has dementia. If the person had no digital estate plan, it may be a challenge for family members to gain access to accounts, because login information may be stored haphazardly or be unintentionally discarded. Those who did create a digital estate plan may change details as their dementia progresses. My father was not digitally-minded at all, but I remember how I came across important account information mixed with junk mail stuffed in plastic shopping bags under the bed.
For those who need assistance, check out the resources offered by Memory Banc. Founder Kay Bransford, who also manages the Dealing with Dementia blog, was a caregiver for her parents who were diagnosed with two different forms of dementia, so she understands the challenges firsthand.
Every person with a digital presence should create a plan on how they wish for their digital information to be handled after their death. Communicate with those who will be handling your digital estate to make sure they are comfortable with the role and the responsibilities. If you find yourself designated as the executor for a digital estate, organize and process accounts by type and importance, and reach out to estate officials or the estate attorney if you have any questions.
For caregiver tips, check out my Caregiver Product Recommendations page, with a list of products that I used while caring for my parents.
As an Amazon Associate I earn from qualifying purchases.
Illustration created by Perplexity AI.
Filed under Awareness & Activism
Caregiver SOS podcast: Preparing for the Financial Impact of Caregiving
Recently I had the pleasure of being a guest on the Caregiver SOS podcast. We discussed the financial impact of caregiving, and I shared my own insights from caring for my parents.
The “p” word really is the key word here. We discussed how to prepare financially before a family healthcare crisis strikes. This is a topic that I feel is vital to discuss as a family and I’m grateful for the opportunity to share my story.
You can find Caregiver SOS on your favorite digital audio platform, or via the WellMed Charitable Foundation website.
Listen to Preparing for the Financial Impact of Caregiving with Joy Johnston on Caregvier SOS
For more caregiver tips, check out my Caregiver Product Recommendations page, with a list of products that I used while caring for my parents.
As an Amazon Associate I earn from qualifying purchases.
ICYMI: I’m participating in the Smashwords Summer/Winter sale. Get the e-book version of my award-wining collection of personal essays, The Reluctant Caregiver, for half-off (just 99 cents!) during the entire month of July. Enter the code SSW50 at checkout.
Filed under Awareness & Activism
Summer reading recommendations for caregivers
It has been sweltering in Atlanta for the past month, and summer just began. When it’s too hot to be outside for long, I’m going to turn to one of my favorite pastimes that often gets pushed to the side: reading. I read all day as part of my job, but reading for pleasure is something that I wish I did more. My Kindle is full of books I haven’t started yet, and I have plenty more on my wish list. Reading is something that makes me feel close to my dad, and I feel I inherited my love of books from him.
I could write a book about the many amazing books available for dementia caregivers, but here are my top recommendations:
I’m honored to have “At the Crossroads,” a poem about my father, included in Poetry for the Dementia Journey: An AlzAuthors poetry Anthology. This new collection was published in June and is available on Amazon. Check out AlzAuthors for a large and impressive library of books that inform and support dementia caregivers.
I’m participating in the Smashwords Summer/Winter sale. Get the e-book version of my award-wining collection of personal essays, The Reluctant Caregiver, for half-off (just 99 cents!) during the entire month of July. Enter the code SSW50 at checkout.
If you’d like to honor the memory of dementia awareness advocate Wendy Mitchell, who died earlier this year, consider one of her books. One Last Thing is aptly titled as her final work. Somebody I Used to Know is her best known and highly acclaimed book.
Finally, another shameless plug: Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias is a wonderful collection that captures the highs and lows of the dementia caregiving journey. I’m honored to have a story about my father, “French Toast,” included in this edition.
What books are on your summer reading list?
For more suggestions beyond books, check out my Caregiver Product Recommendations page, with a list of products that I used while caring for my parents.
As an Amazon Associate I earn from qualifying purchases.
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Filed under Awareness & Activism
Summer is here: Caregiver tips to keep loved ones safe
Summer officially began this week, but here in Atlanta, the heat arrived a month ago. Summer here is brutal and unrelenting and requires one to plan outdoor activities carefully. Humidity brings another level of misery and danger to summer heat waves. Beyond the standard temperature and heat index readings, it’s important to take into consideration heat and humidity with a more accurate measurement such as the wet bulb temperature; check out the readings for major cities.
Whether it’s the broiling triple digit temperatures out west or the oppressive humidity of the south, summer creates multiple challenges for caregivers. Keeping elder loved ones safe both indoors and out during the summer months requires smart planning.
Before a heat wave, check on your elder loved ones and make sure their homes have adequate cooling options. Keep in mind that elders on a tight budget may be reluctant to turn on the air conditioner, but that ill-advised decision could cost them their lives. Energy-efficient air conditioners are now available. Smart thermostats can help you monitor the temperature remotely and adjust if necessary.
Battery-powered handheld fans can offer a mobile form of relief both indoors and outdoors. I find that even with air conditioning, a tabletop fan helps keep the air moving in upper floor bedrooms, where it can get stuffy quickly. In milder climates, such as where my parents lived, oscillating fans may be sufficient to keep rooms comfortable.
Outdoor safety during the summer is multifaceted. Elders are more susceptible to heat, but spending time outdoors for short periods can offer important health benefits. Timing is key: aim for outdoor time in the early morning or in the evening after the sun goes down. For those who garden, wearing protective clothing and a hat is important, as is staying hydrated and taking breaks. These neck fans can help one cool down quickly when doing outdoor activities.
During summer heat waves, staying hydrated is essential. I witnessed my mother suffer the consequences of dehydration and the symptoms resembled dementia. From my experience, it can be difficult to encourage older people and those with dementia to drink enough fluids. These Stanley water bottles come with convenient handles and some models include built-in straws for ease in sipping. For outdoor adventures during the summer, carry hydration drink mix pouches such as Liquid I.V. which offer a quick electrolyte boost.
Mosquitoes aren’t just annoying, but can carry West Nile Virus, which can be deadly in older people. Consider a mosquito repellent device in addition to citronella candles, mosquito-repellent plants and clothing to keep loved ones safe while enjoying their home’s outdoor spaces.
I hope these suggestions help you plan for safe and enjoyable time outdoors this summer with your elder loved ones.
For more, check out my Caregiver Product Recommendations page, with a list of products that I used while caring for my parents.
As an Amazon Associate I earn from qualifying purchases.
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Filed under Awareness & Activism
How caring for loved ones can leave one without a home
Imagine finding yourself homeless after sacrificing to care for a loved one. According to a recent NPR report, the tragic scenario is not that uncommon.
A person may need to move in with the care recipient if they are the primary caregiver and may not be able to maintain a job if needed for caregiver duties around the clock. In certain states, a family caregiver may receive a small family caregiver subsidy. This doesn’t replace a full-time income, but between a care recipient’s funds (such as disability or social security) and the caregiver subsidy, a person may be able to make ends meet. But once the care recipient dies, those benefits disappear, leaving the caregiver in a precarious financial situation.
If the care recipient rented their home, then a caregiver may find themselves having to move out quickly. Even if the care recipient owned their home, unless specific arrangements were outlined in a will or other legally binding document, the caregiver will have to negotiate with family members regarding living arrangements.
What may get overlooked is a caregiver’s own health issues and how long it can take time to restart one’s life, especially in the midst of active grieving. Those who were already living paycheck to paycheck may struggle to secure full-time employment upon re-entering the job market and the housing market in major cities is skyrocketing in price and running low on inventory. Any social services benefits that a caregiver seeks may take months to become active. This can lead to outcomes that otherwise they would never have imagined, such as homelessness.
A family medical crisis often happen with little to no notice. I encourage everyone to think about what they would do in such a situation, and make a plan on how to address financial and housing issues.
For caregiver resources, check out my dementia caregiver product recommendations. As an Amazon Associate I earn from qualifying purchases.
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Filed under Awareness & Activism
Poetry for the Dementia Journey: An AlzAuthors Anthology available now
I’m excited to share that Poetry for the Dementia Journey, an AlzAuthors Anthology, is now available.
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..
Filed under Awareness & Activism
CNN’s Dr. Sanjay Gupta explores his own dementia risk
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.
For more caregiver resources, check out my dementia caregiver product recommendations. As an Amazon Associate I earn from qualifying purchases.
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Filed under Awareness & Activism
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The Memories Project 