Month: March 2023

By Rachel Ford, Attorney at Law, Alz Stars Team member

Alzheimer’s Disease didn’t burst its way into my life. It didn’t cause a huge scene when I was first impacted by it. It walked, slowly. But, as we all know, even the slow and steady turtle can make it miles and miles down the road.

My grandad, my mom’s father, was diagnosed with Alzheimer’s in 2012. Alzheimer’s took him slowly. At first, he would mix up people’s names (but what 80-year-old doesn’t?). Then, he walked into the wrong house while visiting my family and me. He then forgot people with whom I’d been friends 20-plus years. Finally, he forgot me and my family. Alzheimer’s took him in March of 2022, and he was the same easygoing gentleman he had always been until the very end.

My gran, my mom’s mother, was diagnosed with Alzheimer’s in 2021. She had taken care of her husband with Alzheimer’s for almost 10 years prior to her diagnosis, so it seemed incredibly unfair she had to deal with this terrible disease, too. The isolation of the COVID-19 pandemic seemed to speed up her memory loss compared to my grandad. She still remembers my family and me on our weekly Zoom call, but she already forgets my friends she has known for decades. She isn’t as easy to deal with as my grandad was; she calls her banks so many times they think she’s fraudulent and freeze her accounts. My mom, her power of attorney, has spent hours on the phone with my gran’s banks, unfreezing her accounts.

My family lives 12 hours away from my grandparents; we live near St. Louis, Missouri, and my grandparents live near Hamilton, Ontario, Canada. Even with the distance, my grandparents were a constant in my life. Up until 2015, my grandparents made the 12-hour drive to visit my family at least twice a year for around a month per visit. From around 2015 to the start of
the COVID-19 pandemic, my gran would come by herself. My grandparents didn’t miss my brother’s or my high school graduations. My gran was able to come for both my brother’s and my college graduations. I graduated law school in May 2022, and my gran wasn’t able to make the trip. It was my first graduation without either of my grandparents. I know both she and my grandad would have been there if they could have, beaming with pride in the stands. The distance between us makes it hard, but even now we make it up to visit my gran at least twice a year.

Alzheimer’s Disease takes those moments away. It slowly creeps along, stealing memories from us and its victims as time passes on. I have dedicated running my first marathon to funding research for a cure to Alzheimer’s disease. I may be slow and steady, like the way Alzheimer’s took my grandad, or I may be unexpectedly fast, like the way Alzheimer’s is taking my gran. Either way, I am grateful to be able to run and make a small difference in our hopes to find a cure.

If you would like to support Rachel in her marathon, go to: http://act.alz.org/goto/RachRuns4ALZ

The Alzheimer’s Association Illinois Chapter will host Release The Silence Conference on Saturday, April 22, 2023. Conference is designed to educate our community, future caregivers, and the healthcare industry about Alzheimer’s disease and other forms of dementia. The conference is designed for those who are caregivers of a person with Alzheimer’s, individuals who want to learn more about the disease as well as professionals wanting to understand the health disparities which affect individuals in the African American community.

“Our community is facing a major challenge: how to deal with the growing number of African-Americans living with Alzheimer’s disease and how best to support their unpaid family caregivers. Alzheimer’s disease impacts all races and ethnicities, but African-Americans are twice as likely to develop Alzheimer’s disease compared to Caucasians,” said Delia Jervier, Executive Director Alzheimer’s Association, Illinois Chapter. 

Topics covered will include: the Alzheimer’s & dementia journey, managing the caregiving role and navigating healthcare systems, addressing the latest treatment options, myths and misconceptions about the disease, knowing the signs and symptoms, and much more.

In partnership with: Chi Eta Phi, Alpha Eta Chapter – The Kroc Center – Scottish Rite Prince Hall Masons and MyOwnDoctor.

The Alzheimer’s Association is committed to providing access to resources and information to communities who need it the most and this event is part of this effort.  Registration: bit.ly/ReleaseTheSilence 

The Kroc Community Center Chicago
1250 W. 119^th Street
Chicago, IL 60643  
Saturday, April 22 (10:00AM – 2:00PM) 

In September 2022, #ENDALZ Champion and country music artist Jay Allen debuted as a contestant on “The Voice,” bringing new eyes and ears to the music he created after losing his mom, Sherry, to Alzheimer’s.

When I first came to Nashville 10 years ago, my mindset was similar to every aspiring dreamer who comes to Music City. But it was not until I wrote a song out of heartbreak, “No Present Like the Time,” trying to find a sense of understanding about my mom and her Alzheimer’s experience, that I truly felt like I was doing something special.

My song “Blank Stares,” which I wrote about my mom and brought her up onstage for in 2018, was not done for success — it was done to tell my story and share the effects of this disease with the world. It continues to be the most honest I have ever been. [“Blank Stares” went viral after a fan posted a video of Jay holding onto Sherry during an onstage performance, viewed more than 125 million times on Facebook.]

Human nature is to judge. When I walk into a room with all my tattoos, I know how I am often perceived. I want people to look past what they see and listen instead: to my music, my words, and my message. It has truly become an obligation as an artist to be part of helping heal the Alzheimer’s community. 

By sharing my own story, I hope I am creating a safe place for people to share their heartache. It sounds strange, but I feel like I made it cool to be sad, okay to talk about sad things. Opening up and being vulnerable is the first step on this journey. 

Faith & family

I wrote my new song “No Present Like the Time” before appearing on NBC’s “The Voice” this past fall. This song was born at the tail-end of my grief from losing my mom. I climbed out of a very dark place and created this song to lift myself and others up. It is a reminder of what’s most important in life … and how precious time is. 

Through my music, I am taking people to my church, and I will continue to do that. This song is about going through the grieving process and coming out of it alive and as a better person. 

When you lose someone, you realize we only have one go. It took a lot for me to wrap my head around the idea that I wouldn’t get to see my mom, receive a card from her, or hear her voice. Many people tend to take those moments for granted. Now, I know I never will.
I believe that if you go through life honestly, you have to believe in something. When Alzheimer’s hits home, it is easy to say “Why me?” and point fingers at a higher power like God.

I am still learning that good things come back tenfold when you put positivity in the world. I was not the best brother, but after losing my mom and realizing how important family is, me and my siblings talk every single day. It has also been so easy to wholeheartedly be in my relationship with my wife, who I married in November. You have to choose that. And there is no present like the time. 

Where there is a will, there is a way.

I clearly recall the moment when my mom walked through the door and I immediately knew: “I can’t fix this.” It pissed me off. We have two options in this life, fight or flight; at that moment, I wanted to get out. I didn’t know how to face this disease and I wasn’t ready to open up. Once I was, I realized how important having conversations about Alzheimer’s is, this disease that can be so upsetting, defeating and just plain sad. 

The biggest struggle of Alzheimer’s is the role reversal … that you now have to fight for the person who nurtured and cared and fought for you. When I wrapped my arms around my mom onstage in 2018, that was real. It was the hardest and most brave thing I have ever done, and when the healing began. 

https://www.youtube.com/embed/WmjwWGXLurY?fs=1&enablejsapi=1&version=3
Don’t be scared to share your feelings or show people that you are sad. Be honest in conversations. It took a lot longer for me than I thought it would, but constantly being open and honest during the grieving process allowed me to feel more alive, with more understanding. Losing mom was hell, but it led me to healing.

I didn’t know that by telling my story, strangers would lean on me, put their heads on my shoulders, and cry their eyes out. Even though I take pride in opening up my world and taking on other people’s pain, it reminds me of my own loss. And yet it is so rewarding and has given me a purpose. If I can give healing to one person for a few minutes after one of my shows, I will.

Going on “The Voice” in 2022 allowed me to further create this powerful community of people affected by Alzheimer’s. I felt ready for “The Voice” because I had accomplished all I could on my own and wanted my songs that were born of my journey and healing to continue to be elevated to help others. I wanted a message of hope out in the world, and I wanted my story told.

Today, I am bear-hugging the world. I hope you enjoy my song, and find your own form of healing in its lyrics, and the power to relish in every precious moment we have.

Take a picture, take a chance
Chase a dream, chase a girl
Say a prayer or take a trip
Don’t hold your breath, hold your kids
‘Fore they’re too big

‘Cause it can fade in a minute
No matter how you spin it
That clock keeps tickin’
It can stop on a dime
Be careful how you spend it
In a blink, it’s gone, goodbye
‘Cause there’s no time like the present
There’s no present like the time

It’s a gift, it’s all you get
Make a friend, make amends
Make a call, tell the truth
Say “I love you”

Help a stranger, help yourself
Pull that Bible off that shelf
Open it up with your mind
See the world through His eyes
Make the most of what matters
The most in this life

‘Cause it can fade in a minute
No matter how you spin it
That clock keeps tickin’
It can stop on a dime
Be careful how you spend it
In a blink, it’s gone, goodbye
‘Cause there’s no time like the present
There’s no present like the time

It’s a gift, it’s all you get
Make a friend, make amends
Make a call, tell the truth
Say “I love you”

About: NBC’s “The Voice” contestant and Alzheimer’s Association Celebrity Champion Jay Allen continues his dedication in the fight to end Alzheimer’s in honor of his mom. Visit Jay on Instagram. 

Daylight Saving Time (DST) is a seasonal practice that involves adjusting the clocks forward by one hour in the spring and back by one hour in the fall. Despite being a seemingly small shift, DST can significantly impact our circadian rhythm, which regulates our sleep-wake cycle. The suprachiasmatic nucleus is a part of the human brain which controls our circadian rhythm. This part of the brain utilizes external cues, for example, light and darkness, to synchronize with the external environment. The sudden shift in time can disrupt this synchronization, causing temporary sleep disturbances as our bodies adjust to the new schedule.

As we prepare to spring ahead with DST on Sunday, March 12, the Alzheimer’s Association is encouraging caregivers and families of loved ones with Alzheimer’s or dementia to keep safety top of mind.

Sleep Issues in Individuals with Alzheimer’s and Dementia

For individuals with Alzheimer’s and dementia, Daylight Saving Time could cause sleep issues that can further exacerbate the symptoms of their condition. Alzheimer’s is a progressive brain disorder affecting memory, thinking, and behavior. It is estimated that over 6 million people in the United States are living with Alzheimer’s, including 230,000 Illinois residents, and this number is expected to grow as the population ages, especially in the elderly. Dementia, on the other hand, is a broader term encompassing a range of cognitive impairments, including memory loss, difficulty with language and communication, and problems with decision-making. Individuals with Alzheimer’s and dementia mostly experience sleep problems, including difficulty sleeping. 

Sleep disturbances are common among people with Alzheimer’s and other dementias, including changes in sleep schedule and restlessness/wandering during the night. It has been reported that up to 45% of people with dementia may have sleep problems. Many people with Alzheimer’s wake up more often and stay awake longer at night. Those who cannot sleep may wander, be unable to lie still, or yell or call out, disrupting the sleep of their caregivers. Experts estimate that in the late stages of Alzheimer’s, individuals spend about 40% of their time in bed at night awake and a significant part of their daytime sleeping.

Connection Between DST and Sleep Disturbances in Alzheimer’s and Dementia

Individuals with Alzheimer’s and dementia are particularly vulnerable to sleep disturbances, and the disruption caused by DST can exacerbate their symptoms. These individuals often experience disrupted sleep-wake cycles due to cognitive impairments, leading to irregular sleep patterns and daytime drowsiness. The sudden change in the timing of the sunrise and sunset caused by DST can further disrupt their already fragile sleep patterns, leading to additional sleep disturbances such as waking up too early, difficulty falling asleep, and daytime fatigue.

“Research has shown us that not getting enough sleep because of insomnia or sleep apnea may result in problems with memory and thinking and increase the risk for Alzheimer’s-related brain changes,” said Maria C. Carrillo, PhD, Alzheimer’s Association chief science officer. “findings show that disrupted sleep patterns not only put the overall health of people with dementia at further risk, they may also worsen their memory loss and disrupted thinking.”

The connection between Daylight Saving Time and sleep disturbances in people with Alzheimer’s and dementia is particularly concerning as sleep plays a vital role in cognitive function and memory consolidation. Sleep disturbances can exacerbate the cognitive decline associated with Alzheimer’s and dementia, making it even more difficult for individuals to perform daily activities and maintain independence.

Caregivers and healthcare professionals must be aware of the impact of DST on individuals with Alzheimer’s and dementia and take steps to mitigate its effects. Adjusting the sleep schedule gradually, providing exposure to natural light, and creating a comfortable sleep environment can help individuals with Alzheimer’s and Dementia adjust to DST and improve their sleep quality.

Managing DST and sleep for people with Alzheimer’s and Dementia can be challenging, but some strategies can help. It is important to establish a regular sleep schedule, limit caffeine and alcohol intake, and create a comfortable sleep environment. Caregivers should also monitor for signs of sleep disturbance and adjust their routines accordingly. By managing DST and sleep, individuals with Alzheimer’s and dementia can improve their quality of life and better manage the symptoms of their condition.