Happy Father’s Day. The Memories Project was started in memory of my father. As a baby, I was definitely daddy’s little girl. As I grew older, I gravitated towards my mother as I spent most of my time with her. Dad worked the swing shift so once I started school, our schedules didn’t overlap much. I moved halfway across the country for college and so Dad and I never had the chance to reconnect on a deeper level.
Alzheimer’s is a cruel reminder of what you’ve lost of a loved one before they are actually gone from this world.
Fortunately I have photos and cards and recordings of my father singing to me when I was a baby so I will always remember that special father-daughter bond we had.
Hope you are able to spend time with your father today or find comfort in the memories.
I came across a documentary series by Peter Murphy Lewis who was recently profiled on Being Patient. He candidly admits to “making a documentary out of guilt.” He was in another country working when his beloved grandfather, who had dementia, died.
“We treat the buildings where our elders live as places of “sadness,” which inadvertently devalues the people who work there. It turns a noble calling into an invisible job,” Lewis said. His goal with the project is to shine a light on those workers who care for our elder loved ones.
My own family caregiving experience followed a similar road. I was in another state, working, when my father died from Alzheimer’s complications. I too remember getting that dreaded call while on the job. I also experienced a deep amount of guilt that I was mostly a long-distance caregiver. And similar to Lewis, that guilt inspired the birth of a creative project about caregiving. In my case, it’s the blog that you are reading right now, The Memories Project.
If you find yourself weighed down by guilt after the loss of a loved one, consider ways you can honor your loved one’s memory with your own unique skillset. It doesn’t have to be a public project. I know of people who have created a memorial garden in their backyard. It could also be a conscious lifestyle choice: to spend more quality time with family, to travel more, to take up a new hobby or reconnect with an old friend.
Everyone moves through the grief process in their own way. For some, embarking on such a project can bring some meaning and closure to one of the most difficult events a person can experience.
I write a lot about the high cost of Alzheimer’s care, because I feel it’s vital that society understands just how expensive such specialized care is and how little government support there is to help middle-class families pay for it. I’m sharing this post from Mary K. Doyle who writes about her husband’s Alzheimer’s experience and outlines the costs involved whether one tries to care for their loved one at home or places them in a memory care facility.
As Doyle suggests, the best time to plan for such medical decisions is early in the Alzheimer’s journey. I wrote in The Reluctant Caregiver about the consequences of my parents not being prepared after my father experienced a medical emergency and could not be returned home due to his advanced Alzheimer’s disease. These are tough conversations to have, but being able to make such decisions while your loved one still is able to contribute their wishes is a true gift, and will give you some peace of mind as you navigate care options later down the road.
One aspect of my health that I’m immensely grateful for is that I’m able to fall asleep easily and consistently get a good night’s sleep. I’ve watched other people, including my mother, struggle with insomnia and how much of an impact it can have on overall well-being. If you or someone you’ve lived with has insomnia, you understand about the nightly anxiety, the restless tossing and turning, the exhaustion that comes with sleep deprivation, and the side effects of sleep medication.
It turns out that sleep quality may play a role in dementia risk. I’ve written about past studies that explored sleep and cognitive health, so this isn’t a new concept. A new study published in Science goes a step further to explore the activities that take place in the brain during sleep and the impact those activities may have on dementia risk.
In essence, during deep sleep, the brain performs housekeeping tasks that helps clear the brain of waste products. Disrupted sleep leads to less clearance of these neurotoxins such as amyloid-beta and tau, which in turn can increase inflammation and degeneration. These proteins are thought to have a connection to Alzheimer’s disease risk, though no definitive link has been established. (Some people with normal cognitive functioning have been identified as having high levels of amyloid-beta and tau in the brain.)
The study’s author also found that “heart-rate variability may be a biomarker of sleep-related brain health.” If further research supports this theory, it would be a simple tool to help identify those with poor sleep quality who may be a greater risk of dementia. If you wear a health tracker, your HRV data may already be collected. My Oura ring captures that information nightly.
They say as you get older you need less sleep; so far I still need about 7 hours to function normally. I used to sleep longer on the weekends but now I don’t, maybe 30 minutes longer if the pets will allow. Working remotely full-time definitely helps, as I’m able to awake naturally without an alarm clock.
According to the study’s author, “Regular sleep schedules, sufficient sleep duration, physical activity, minimizing stress, and avoiding stimulants or bright light exposure late in the evening” is recommended to support healthy sleep.
Death has a way of warping time. While 11 years doesn’t feel that long to me, it does seem like my mother died in a different era. For me, her death was the end of normal times, and the decade that has followed has ushered in a world I barely recognize.
As those who have experienced loss of a loved one knows, grief is not linear. It moves in unpredictable waves. Another way of describing it is “growing around grief.”
My mother doesn’t visit me that often in dreams but one way I feel her presence is each year, around the time of the anniversary of her death, the butterfly bush I planted in her honor begins to bloom.
Those of us concerned about Alzheimer’s risk know there are many steps we can take to support our cognitive health, but sometimes the advice can feel overwhelming. Where to begin? What’s more important, exercise or diet? The Alzheimer’s Association is trying to help address this issue by launching a focused 6-step challenge, called “(re)think your brain.”
The challenge will focus on areas such as eating right, getting exercise, and challenging your mind.
Sometimes, a little accountability is all we need to establish a healthy routine. The free program uses an interactive tool to help gauge what you are already doing well to support your brain, and the areas where you could use a little motivation and guidance.
Each participant that completes the initial onboarding process will receive a customized Action Plan. Users can expect to receive via their preferred method of email or text:
Practical tips to get started
Tools to help build habits that stick
Clear guidance from the leaders in brain health
Life gets busy and family caregivers tend to put off self-care. As we head into summer, consider taking the brain challenge.
Mother’s Day stirs a mixed range of emotions for me, as it does for many whose mothers are no longer alive. As I wrote about in The Reluctant Caregiver, my mother and I often did not see eye to eye. Yet there is a bond that can never be broken. I took my first breath in her presence, and she took her last breath in my presence.
I was getting my hair cut yesterday, and out of nowhere, I thought about one of the last photos ever taken of my mother, which was at the hair salon. How she even managed to get out of the house in the pain she was in, I don’t fully comprehend, but she loved to have her hair done.
She was gone two months later.
For those who are grieving this Mother’s Day, I hope you are able to find some comfort and peace through memories and reflections.
A new study found that while many people are not aware of the scientific advances made in blood-based biomarker tests for Alzheimer’s, most support their availability and would be willing to take the test upon their doctor’s recommendation.
I recently wrote about how dried blood samples captured on a card could allow people to do an at-home test for Alzheimer’s biomarkers. But I knew I had written about such blood tests before then, so I dug into The Memories Project archives and sure enough, I found a post from 2014. I didn’t realize it had been 12 years since I had written about the potential for a blood test to diagnose Alzheimer’s. It’s a stark reminder of how long scientific progress can take to reach the general public. As the HealthDay article points out, only a couple of blood tests that check for levels of amyloid and tau proteins in a person’s bloodstream have been approved by the FDA and are not yet ready for widespread use.
The latest study captured the opinions of nearly 600 people, average age 62, from the Chicago area. Over half had a close relative who had been diagnosed with Alzheimer’s disease. While 84 percent of those surveyed were unaware of blood biomarker tests, 94 percent said it was important to offer such tests to those with suspected memory or cognitive issues. And on another promising note, 85 percent of those surveyed would be willing to take such a test if it was recommended by their doctor.
Getting that public approval is key to maximize the value of screening tests. The study also found that 60% of those surveyed felt it was important to offer blood-based biomarker tests for Alzheimer’s to those age 65 and older on an annual basis.
The study identified potential barriers for blood test adoption, and cost, test reliability, and concerns about the consequences of receiving a positive result were among the top concerns. I would also be concerned about cost and whether the test would be covered by health insurance, as well as reliability. But my opinion about taking such a test hasn’t changed since 2014: I would definitely take such a test. With dementia on both sides of my family tree, I think it’s important to capture any changes in cognitive health as early as possible. The current Alzheimer’s treatments on the market work best for those in the early stages of the disease. Earlier diagnosis gives people the opportunity to make decisions about their future care and to take advantage of quality time with family before significant cognitive decline.
If you have questions or concerns about Alzheimer’s screening options, talk to your doctor.
The Alzheimer’s Association recently released their annual “Facts and Figures” report. It’s always a sobering collection of data, but important to document and share to increase Alzheimer’s awareness and to ensure the disease remains a high priority for funding research and care support initiatives.
Here’s a roundup of the top Alzheimer’s insights from the report:
More than 7 million Americans are living with Alzheimer’s.
1 in 3 older adults dies with Alzheimer’s or another dementia.
Approximately 1 in 9 people age 65 or older has Alzheimer’s.
Women account for 2/3 of Alzheimer’s cases in America.
Race plays a role in Alzheimer’s risk, with Black Americans (twice as likely) and Hispanic Americans (1.5 times as likely) to develop the disease vs White Americans.
Those with Alzheimer’s or other dementias have twice as many hospital stays and more skilled nursing facility stays and home health care visits per year than other older people.
The lifetime cost of care for a person living with dementia is estimated at a whopping $405,262 (in 2024 dollars.) What’s worse is that 70 percent of those costs are borne by family caregivers.
The report also highlights the growing contributions of family caregivers.
Nearly 13 million Americans provide unpaid care for people with Alzheimer’s or other dementias.
About 30% of caregivers are age 65 or older.
Most caregivers (66%) live with the person with dementia in the community.
Approximately 25% of dementia caregivers are “sandwich generation” caregivers, juggling the care demands of an aging parent and at least one child.
Caregivers are stressed out: Nearly 60 percent of dementia caregivers report feeling high to very high emotional stress.
Unpaid caregivers provided more than 19 billion hours of care valued at more than $446 billion.
Forty-one percent of caregivers have a household income of $50,000 or less.
Below is a video synopsis of the report’s most important findings.
Based on the Alzheimer’s Association report and resources, I used NotebookLM to create an infographic of ways to protect the brain, which appears at the top of this blog post. This year’s report found that Americans have a deep interest in brain health and understand that lifestyle choices can have an impact but are unclear about how to implement them in their own lives. The good news is that supporting brain health isn’t that complex: moderate exercise, decent diet, managing stress, good sleep quality, engaging in brain-friendly hobbies like puzzles, learning new languages, or playing a musical instrument. The tough part is being consistent in implementing these healthy lifestyle choices. Every positive choice helps, so consult with your doctor to see which lifestyle change may be most beneficial for you.
There’s new research supporting previous findings that there are sex-based differences in Alzheimer’s disease progression that should be considered when it comes to screening protocols.
Researchers at Georgia State University (which is just down the street from me) analyzed brain scans of 332 people at different Alzheimer’s stages. While males show earlier gray matter volume loss, their rate of loss tends to plateau, which may result in “earlier onset but slower progression of structural decline.” Conversely, females showed delayed brain atrophy when compared to males, but when the decline did begin, it was at a steeper rate.
The study explores 3 theories that may have an impact on why Alzheimer’s disease evolves differently in men and women: hormonal pathways, APOE-e4 mechanisms, and women’s higher cerebrovascular burden. As I’m a APOE-e4 carrier, it’s concerning that the body of research so far suggests that it contributes to “more severe outcomes in women.” Obviously there’s nothing I can do about genetics, but it’s important to be aware of such factors.
Research will continue in this area to determine if sex-specific screening may support “earlier, more precise interventions.” This is critical because current treatments typically work best in the earlier stages of the disease.
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