Illinois Chapter Blog

As temperatures rise across Illinois, extreme heat can have a significant impact on everyone’s safety, but it can be especially stressful and confusing for individuals with Alzheimer’s and other dementias. Alzheimer’s disease causes a number of changes in the brain and body that may affect their safety, including changes in sensitivity to temperatures.

Today, there are more than 6 million Americans living with Alzheimer’s disease, including 233,000 in Illinois. Taking measures to plan ahead for weather changes, like extreme heat, can prevent injuries and help a person with dementia feel more relaxed and less overwhelmed.

“People living with Alzheimer’s and other dementia can be vulnerable during extreme weather because their judgment may be impaired and they may be unable to communicate discomfort,” said Delia Jervier, Executive Director of Alzheimer’s Association, Illinois Chapter. “It’s really important to take extra precautions with these individuals when there is extreme heat or other excessive weather conditions.”

The Illinois Chapter of the Alzheimer’s Association is offering important safety tips for caregivers and families facing Alzheimer’s and other dementias to prepare for the hot summer months:

• Make a plan. Family and friends should prepare accordingly and make plans to regularly check in on a person living with Alzheimer’s disease and other dementias during extreme heat. Arrange alternative plans for cooler spaces, if air conditioning is unavailable, and dress in loose, light clothing.
• Pay attention at night. Keep people living with Alzheimer’s disease and other dementias cool by using fans and keeping the air conditioning on. At night, low temperatures can still exceed 75 degrees with little fluctuation in humidity levels, making for difficult and exacerbating sleeping conditions, heightened anxiety and increased agitation.
• Prepare for behavioral challenges. Research shows that heat can increase agitation and confusion in people. Try to remove behavioral triggers by addressing the person’s physical needs related to the heat, then tending to their emotional needs.
• Stay hydrated. Increased water intake is essential to maintaining good hydration and health during extreme heat. Know the signs of heat exhaustion to avoid heat stroke. Dehydration may be difficult to notice in a person living with Alzheimer’s disease and other dementias, as signs like increased fatigue, dry mouth and headache may be difficult to detect. People taking diuretics, sedatives, or certain heart medications may not sweat as much as others, but this does not mean that they are not hot.
• Stay indoors and out of the sun. Heat stroke and heat exhaustion may occur in extreme heat conditions but symptoms may be difficult to detect in people living with Alzheimer’s and other dementias. Keep individuals cool by using air conditioning at home or moving to a public place, such as a senior center or shopping mall. If you must go outside, be sure to dress appropriately, loose, light clothing, wear a hat, and apply sunscreen with an SPF of at least 30 or higher.
• Stay informed. Keep an eye on local weather forecasts. High temperatures are not the only cause for concern. Humidity and air pollution indices can cause breathing difficulties. The person should be monitored regularly and seek medical attention if symptoms arise of dehydration, heat exhaustion, or heat stroke.

The Alzheimer’s Association is here to help families take measures to prepare for and cope with such extraordinary circumstances. For more information, visit alz.org or call the 24/7 Helpline at 800.272.3900. 

How did I get involved with the Walk to End Alzheimer’s?
I first got involved in the walk when my grandfather (Dick Briel) my mom’s father was diagnosed and passed away in 2007 from Alzheimer’s. I really got involved when my mom was diagnosed in 2018. I was living in California and got a call that my mom was slipping and starting to be very forgetful. I packed up and moved in with my mom and my stepdad so I could help in whatever way. My mom has Early onset Alzheimer’s and was only 57 when she was diagnosed at the Mayo Clinic in Minnesota. I called the Alzheimer’s Association frequently to talk to someone who knew what I was going through and to ask questions, I got advice on joining a support group in my area and then I decided to join the Alzheimer’s Walk committee. It has been so amazing having the Alzheimer’s Association in my back pocket when I need to talk, get advice, or ask a question. My Committee has my back and has been a great sounding board. The committee head for the Dupage Walk Alison McEwen met me for coffee and we found out that both of our stories were very similar about our parents.

How has Alzheimer’s disease impacted your life?

It’s hard to put into words how much this disease has impacted me. A few words to describe my mom are Role Model, Amazing Business Women, Great Friend to all, my rock, and my best friend. My mom was diagnosed when she was at her prime and only 57. It’s just way too young and it is affecting people younger and younger every day. I did have the privilege of being my mom’s caregiver for close to 4 years. It was some of the hardest and best times that I have ever had. The hardest day was by far August 1, 2022 when we had to place my mom in a memory care facility. It was getting dangerous for her and we knew it was the best thing to do. My mom is currently living her best life in memory care in Aurora, IL we get to visit her as much as we would like and she lights up when she sees us. She still remembers the close family and it’s amazing to see her eyes look up into yours.

Why should others raise funds and awareness for Alzheimer’s Disease?
I think it is extremely important that we bring awareness because this disease is taking too many people too fast. Many people think it’s just an old person’s disease and that they are going to die anyway but that is not the case. It is heartbreaking for the person and the family members to watch their loved ones forget you, and everything around you. It’s so hard to watch them be confused and flustered. I do my part to speak up about it and raise awareness. This year I worked really hard with a Bowling fundraiser where the proceeds went to my Walk page. I was able to raise $2,000 just from the fundraiser and have one more in August. I work hard to advocate for my mom and for this disease. People need to know Alzheimer’s kills more people than breast cancer and prostate cancer combined. Alzheimer’s also affects Women more than it does men.

Is there anything additional you would like to share to raise awareness?
I just want to add that it was really hard when I was being my mom’s caregiver. I worked part-time and took shifts with my stepdad, we worked well as a team. My mom’s name is Sue Vidmar and my name is Shelbi Vidmar my stepdad is John Postlewaite. I just want people to help with raising money because we need to find a cure for this disease. We need survivors. My mom is currently 62 and is for the most part doing well. She is in a wheelchair now but can take a few steps on her own. She loves visitors, treats, and being with her family and friends.

CONTACT:     Lionell Martin, Alzheimer’s Association – Illinois Chapter, 773.593.4211, lrmartin@alz.org

The Alzheimer’s Association celebrates today’s U.S. Food and Drug Administration (FDA) action to grant traditional approval of Leqembi™ (lecanemab, Eisai/Biogen) for the treatment of early Alzheimer’s disease with confirmation of elevated amyloid beta. This is the first traditional approval of an Alzheimer’s treatment that changes the underlying course of the disease.

“This treatment, while not a cure, gives people in the early stages of Alzheimer’s disease more time to maintain their independence and do the things they love,” said Joanne Pike, DrPH, Alzheimer’s Association president and CEO. “While we continue efforts to discover new targets and test new treatments, people living with this fatal disease deserve the opportunity to discuss and make the choice with their doctor if an FDA-approved treatment is right for them.”

Leqembi works by targeting amyloid beta, the primary component of amyloid plaques, which are a disease-defining hallmark in the brains of people with Alzheimer’s disease. Well-conducted clinical trials clearly demonstrate that removing amyloid from the brain provides measurable, meaningful benefit in people with early Alzheimer’s. In a Phase 3 clinical trial, Leqembi delayed cognitive decline by 5.3 months compared to placebo after 18 months of treatment, at a time when such delays are most valuable to the individual. Further delays in progression are anticipated with extended time under treatment. It is administered twice monthly through intravenous infusion. Leqembi has been on the market since January 2023, when it received accelerated approval from the FDA. However, to this point access has been blocked by Medicare coverage policies.

“This is a momentous day for people living with early-stage Alzheimer’s and their families,” said Hugh Courtney, 60, who was diagnosed with Alzheimer’s disease in 2020. “I was in the Leqembi clinical trial, so I am really excited about today’s FDA approval. It gives others living with early-stage Alzheimer’s a chance to pursue treatment that may slow progression of their disease.”

With FDA-approved treatments now available, it is more important than ever that patients and their families have informed discussions with their health care providers about the potential risks and benefits of treatments.

The FDA included a boxed warning in Leqembi’s label to raise awareness about specific side effects and at-risk populations. Side effects include amyloid-related imaging abnormalities (ARIA), typically a temporary swelling and/or bleeding in certain areas of the brain that usually resolves over time. ARIA does not usually cause symptoms but in a low number of cases can be serious. The FDA also recommended, but did not mandate, genetic testing. People with two copies of a well-known Alzheimer’s risk gene may be more at risk of ARIA. 

“The FDA’s consideration in the label will help ensure clinicians monitor safety closely — this is a good thing. However, the boxed warning should not keep clinicians and patients from having the conversation about the benefits and risks of approved treatment options,” said Maria C. Carrillo, Ph.D., chief science officer, Alzheimer’s Association.

“More treatments that target the disease from all angles are needed,” Carrillo added. “We look forward to hearing results from a variety of Alzheimer’s and dementia therapies next week at the Alzheimer’s Association International Conference (AAIC), July 16-20 in Amsterdam.”

The Alzheimer’s Association is committed to working with health systems and providers to ensure they have the resources and infrastructure to meet the needs of their patients. Participation in the Alzheimer’s Association’s Alzheimer’s Network for Treatment and Diagnostics (ALZ-NET), which will gather real world data on how people from all backgrounds and communities respond to novel FDA-approved Alzheimer’s therapies, is encouraged by the FDA in the prescribing information for Leqembi.

With this approval, early detection and diagnosis are even more critical to ensure individuals receive the most benefit at the earliest point possible. If you or a loved one is experiencing memory changes, the Alzheimer’s Association strongly encourages speaking with a health care provider for a thorough evaluation and diagnosis and to discuss treatment options. For more information on diagnosis or to find a local health care provider, visit the Alzheimer’s Association at alz.org, or the Helpline 24/7 at 800.272.3900.

More than 6 million Americans are living with Alzheimer’s disease – a leading cause of death in the United States. Additionally, more than 11 million family members and friends provide care to people living with Alzheimer’s and other dementias. In Illinois alone, there are more than 233,000 people living with Alzheimer’s and more than 314,000 family members and friends caring for them.

You can find more information at alz.org/facts. Support and information from the Alzheimer’s Association are available for free anytime, day or night, for individuals with Alzheimer’s disease and their caregivers at 800.272.3900.

About the Alzheimer’s Association

The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Our mission is to lead the way to end Alzheimer’s and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer’s and all other dementia®. Visit alz.org or call 800.272.3900.

In September 2022, Alzheimer’s 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. Jay is ready to take the stage for a live performance at Memorial Park Bandshell in Wheaton, Illinois. The event will take place on Saturday, July 15, 2023 at 6pm CT. The general cost of admission is $40 with $30 of each ticket sold going to the DuPage Co WTEA.  

“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,” said Allen.

Allen wrote “Blank Stares” to tell his story and share the effects of this disease with the world. A video of him performing the song with his mother on stage went viral with over 500 million views on Facebook. His mother has since passed, but Jay continues to tour the country as an advocate for the Alzheimer’s Association, and the song has gone on to raise over $100 million dollars to help fight the disease. Jay has been featured on NBC’s The Voice, ABC World News, PeopleTV, Pickler & Ben, and in People & Forbes Magazine, among others. He was also presented The Caregiver Award by The National Alzheimer’s Association.

Today, there are more than 6 million Americans living with Alzheimer’s, including 233,000 here in Illinois with more than 314,000 caregivers caring for them. As the size of the U.S. population age 65 and older continues to grow, so too will the number and proportion of Americans with Alzheimer’s or other dementias. By 2050, the number of seniors aged 65 and older with Alzheimer’s is projected to double to nearly 13 million.

Tickets are now available online at https://www.eventbrite.com/e/jay-allen-concert-to-benefit-the-alzheimers-association-tickets-606848188267 or by calling 630-690-4880.

Event Details:

Memorial Park Bandshell

225 Karlskoga Avenue Wheaton, IL 60187

6PM CT – 9:30PM CT

Ticket Price $40 ($30 goes to the DuPage Co WTEA)

events@wheatonparks.org

630-690-4880

Today, there are more than 6 million people living with Alzheimer’s disease in the United States, with 233,000 here in Illinois. Alzheimer’s disease can cause people to lose their ability to recognize familiar places and faces. It’s common for a person living with dementia to wander or become lost or confused about their location, and it can happen at any stage of the disease. In fact, it is estimated that 60% of people with dementia will wander and become lost at some point, many do so repeatedly. If not found within 24 hours, up to half of wandering individuals will suffer serious injury or death.

There are several warning signs that lead to wandering including forgetting how to get to familiar places, talking about fulfilling former obligations, such as going to work and trying or wanting to “go home” even when at home.

On January 1, 2016 Silver Search legislation was passed in Illinois. Silver Search is a coordinated effort to bring awareness, education, and resources to help find and safely return people with Alzheimer’s or dementia that go missing. The Silver Search program wants to bring to light the increasing incidences of people with Alzheimer’s or dementia that get lost and ways in which the public can help law enforcement return them home safely.

“While the term ‘wandering’ may suggest aimless movement, individuals who wander have a destination and a purpose,” said Delia Jervier, Executive Director of Alzheimer’s Association, Illinois Chapter. “For example, a person who wanders may have a personal need such as going to the bathroom. And because people living with dementia can become disoriented even in a familiar place, this simple task can become a challenge and may prompt a person to leave the house”.

“Just as Amber Alert is for missing children; Silver Search is for those with Alzheimer’s or dementia. Many of those that wander may still have a driver’s license, may still be in a vehicle, may still be on our roadways,” Illinois State Police Missing Persons Coordinator Craig Burge said. “So it creates a hardship for law enforcement to determine where these people might be located.”

To help families prevent their loved one with Alzheimer’s or dementia from wandering, the Alzheimer’s Association offers these tips:

● Identify the time of day the person is most likely to wander. Plan things to do during this time including exercise as it may help reduce anxiety, agitation and restlessness.

● Ensure all basic needs are met. This would include toileting, nutrition and hydration.

● Create a daily plan. Involve the person in daily activities, such as folding laundry or preparing dinner.

● Reassure the person if he or she feels lost, abandoned or disoriented.

● Consider using a GPS device. If the person is still safely driving, this can help if they get lost.

● Remove access to car keys. If the person is no longer driving, they may forget that they no longer drive.

● Avoid busy places. Shopping malls and other busy areas can be confusing and cause disorientation.

● Assess the person’s response to new surroundings. Do not leave someone with dementia unsupervised if new surroundings may cause confusion, disorientation or agitation

If a family member does wander and get lost, begin your search immediately. Start by searching the immediate vicinity, including “less-traveled” areas in your home. Outside the home, search the yard and nearby surroundings. Most wanderers are found within a half mile of their homes or starting location. If, after 15 minutes, the person is not located, call 911 to file a missing person’s report.

To learn more about ways to prevent wandering or how to take action when wandering occurs, visit alz.org or call 800-272-3900.

Story shared by: Pastor Jeanette Jordan and family

On Father’s Day, Bryan, Allison, Christa, Drew, and Edilah always celebrated the day by taking their dad, Dr. Robert “Bob” Jordan, to his favorite Soul Food restaurant. Sadly, Bob is living with Alzheimer’s disease and was recently moved into a memory care facility.

The children who live nearby, Allison, Christa, and Edilah continue this tradition by picking up his favorite foods and bringing the restaurant to him. This Father’s Day he can expect to dine on fried chicken, fried green tomatoes, collard greens, succotash, potato salad, cornbread and of course his favorite, a slice of German Chocolate Cake!

On July 29, 1962, 20-year-old Robert Andrew Jorden married the love of his life, Pastor Jeanette Jordan.  Fifty-five years later the story of love and happiness, good times and bad, ups and downs, twists and turns, from poverty to prosperity had enough guiding light that it was turned into a published book “From Suspenders to Stethoscope…The Dr. Jordan Story.”

This story was released on June 30, 2017, the day which was the last day of work for Robert A. Jordan, M.D., Pediatrician, a graduate of Rush Medical College, the first African American Chief Resident at Rush Presbyterian St. Luke’s Hospital, a well-known and respected physician who was known for the quality of patient care he gave to thousands of children during his time in practice. He believed that no matter what one’s socioeconomic orientation may be, ethnicity or gender, or religious affiliation – everyone deserved the best of healthcare. Yet this dedicated clinician had been diagnosed with dementia.

It was in January 2014 that the family finally came out of denial and came to terms with what was going on with their dad and husband. The news was shared with his five children as well as his mother and sisters fear of what was later confirmed – he had dementia. The family became more observant of the changes in his behavior. “He would call me from his office two or three times a day to ask how my day was going and I would share with him what I was doing or had done but a few minutes later he would call again, and ask the exact same question. When I would say you just called me and asked me that, he would laugh and say, “Oh I was just kidding,” said Jeanette Jordan.

Dr. Jordan was an avid golfer and would golf at least two to three times per week with his buddies or on his off days and special occasions. However, we began to notice his buddies stopped calling to include him in their golf outings. I eventually realized it was probably because he would interrupt the game when he couldn’t find his phone or misplaced his keys, everyone would have to go on the hunt only to find that his keys were in his pocket and/or his phone in the compartment of the golf cart. He stopped being excited about golfing together. His interest in reading the bible, which he loved to do, diminished.

We were a physician-pastor team and our dialogue with one another about our passions was slowly coming to a halt. I would ask him to stop by the store on his way home from the office to get a loaf of bread, or pick salad fixings and would come with everything but. Around late 2015 his staff started calling me to ask if Dr. Jordan had come home for lunch because it was way past his lunch hour and he had not returned. He once called me to say he had gone to pick up lunch for the staff but he was confused and couldn’t find his way back to the office. He seemed scared and panicky, but I was able to direct him home using landmarks and street signs after about 30 minutes.

I was taking care of my 86-year-old sister who was a double amputee, and he would ask the same questions about her condition over and over. In early 2016 I finally convinced him to let me make him an appointment to see our Primary Care Physician be evaluated for possible memory loss- he wasn’t happy with the suggestion and went hesitantly. My husband was so crafty that he convinced our doctor that nothing was wrong with him, but rather he was preoccupied. When the doctor suggested that he could do a memory loss assessment just to rule out what we suspected, Bob refused. I can remember leaving the office in dismay, frustrated not knowing what to do.

The family began to watch his behavior even more closely. His routine of getting up at 7 a.m., showering, getting dressed, making and drinking a cup of coffee, and stopping by McDonald’s to get some oatmeal before going to the office began to change. He started sleeping later and later. His impeccable dress was a little off and it would take him forever to complete the dressing task; he was constantly misplacing his wallet or his phone or his keys. Every morning was a search for something that he had misplaced. When I located the item, he would fuss and say “who put it there?”. I notice that his demeanor was changing and he would get irritated often. He started to get up earlier to get ready for work, sometimes as early as 6 a.m. when office hours weren’t until 9 a.m., leaving him to pace back and forth until it was time to leave. He stopped calling his mother, I would have to remind him. He forgot that our daughter’s fiancé had flown in from California to ask him for our daughter’s hand in marriage. They had a long wonderful conversation and he gave his blessing. When the day came that she called to say they were on their way to get married, he became angry and claimed he’d never met the man. He began to take longer and longer to come home. As things got progressively worse, my children and I started preparing for Dr. Jordan’s retirement.

We found a psychiatrist who convinced him to do a memory loss test and diagnosed him with Alzheimer’s. A second opinion confirmed this diagnosis. He was placed on medication, which he initially refused to take. We reduced his hours at his office, and my oldest daughter immediately pitched in by becoming the office administrator to help prepare for his retirement. He was resistant to retiring but we finally convinced him it was time to enjoy life outside of medicine, he was now 75 years old and God had given him the ability to practice 10 years beyond retirement age.

Ron Borkowski made quite an impression in high school when he planted a kiss on a pretty, blonde-haired girl who would later become his wife. “I just walked up and kissed her.” Didn’t she think that was forward of him? “l didn’t. It took her back. She was surprised. Yes.”

Four years later in 1962 after he graduated from the University of Notre Dame, Ron married a girl named Carol Weller. The couple would leave South Bend, Indiana and live out West and in the Mideast.

They had five children, and in 1992 moved to Lexington where Ron worked for Sears and later the Lexington Legends. In addition to raising the children, Carol enjoyed reading, walking, and becoming an excellent bowler.

It was 2010 when Carol drove away from a bowling alley and life took a dramatic turn. She had told Ron she was going to visit a friend after bowling. Ron says four hours went by when he took a phone call from Carol.

She was not in Lexington. In fact, she was a long way from home. Carol was in Ashland, Kentucky on the side of the interstate. She had run out of gas and told Ron she had no idea where she was. A Kentucky State Trooper found her.

At that point, Ron knew something was very wrong. Carol was diagnosed with Alzheimer’s Disease, and for the next ten years, she and Ron would do everything they could to fight it. Ron became her full-time caregiver.

Increasingly there were moments she didn’t recognize Ron. He was devastated. “It’s a killer. That’s the hard part.” But they pushed on.

The couple agreed to take part in a clinical trial at U-K’s Sanders-Brown Center on Aging. For two years she took an experimental drug called Lecanemab.

It’s a drug for patients with mild symptoms of Alzheimer’s Disease. Ron says during that time Carol stabilized and her symptoms did not get worse.

Ron remembers how much that meant to him as her husband and caregiver. “I had my Carol back. I didn’t have to worry about tomorrow. Yea you worry, but you could see that hey she’s right in there with you.”

Dr. Greg Jicha, a neurologist at Sanders-Brown, says the drug was a huge success during the clinical trial. “It is an antibody that’s been created in the laboratory to remove, dissolve the amyloid plaques that are at the core of Alzheimer’s Disease from the brain.”

Those plaques are abnormal proteins that first develop in areas of the brain connected to memory and mental activities like thinking.

Dr. Jicha cautions this drug is not a cure, but a critical step forward to finding one. He says, “Carol’s study and the medicine she was taking turned out to be a huge success. Really leading right now to the potential first disease-modifying therapy. Not the eventual cure we’re looking for but the first step in that direction.”

In Carol’s case, her symptoms did eventually become worse, and after eight years of caring for her at home, Ron made a very difficult decision. “We vowed we’ll always take care of each other. You know you’ll never be in a home (nursing home). And the hardest day of my life was when I had to take her and drop her off at the home. And then they suggested I not see her for four to six weeks because she had to get into a new routine for her life.”

Carol received 24-hour care at The Willows of Hamburg. On March 28^th, 2020, Carol passed away at the age of 76. She and Ron had been married for 58 years.

He says he misses her every day. “That’s hard. She was so much part of my life. That loneliness is there. And the memories are there.” Now 83 years old and in very good health, Ron has dedicated the rest of his life to helping the caregivers of people with dementia.

He attends a caregiver meeting once a month in to pass on what he experienced and learned.

His advice to them?

“Basically, surround yourself with support. Because most people say I’m going to take care of you. Don’t worry. And if you do that, what you don’t realize is you start to lose your life. Because you are of no value to your loved one when you start losing your life.”

Dr. Jicha says what Carol and Ron did in the clinical trial cannot be appreciated enough. Lecanemab is expected to be available to the public sometime this Summer.

He says, “That contribution should never be understated. Carol, I’m sure is looking down at us from wherever she is and has to be smiling knowing that she has helped make the world a better place.”

As for Ron his legacy now includes his openness to help others navigate a cruel disease. “It makes me feel like I’m contributing through the memory of Carol to help others. Do I feel good about doing it? Yea, I do because hopefully, it’s helping someone.”

You can learn more about the Alzheimer’s drug Lecanemab here.

Ron Borkowski was his wife’s main caregiver for eight years while she fought Alzheimer’s Disease. In this conversation, he shares how family and caregivers of people with dementia can better understand what their loved one is going thru, and the support group that he speaks with.

Alzheimer’s Association to Host Rallies in All 50 States to Make New Treatments for Alzheimer’s Accessible

—– Rallies will call on CMS to change unfair and discriminatory policy blocking access to FDA-approved treatments for people with early-stage Alzheimer’s —–

—– Alzheimer’s treatments are only FDA-approved treatments not covered by Medicare —–

During Alzheimer’s & Brain Awareness Month in June, the Alzheimer’s Association is ramping up its efforts in making FDA-approved treatments for early-stage Alzheimer’s accessible to all who can benefit. The Association is conducting rallies in all 50 states this month, urging the Centers for Medicare & Medicaid Services (CMS) to change its policy, preventing those with early-stage Alzheimer’s from accessing treatments.

The Alzheimer’s Association estimates that each day without access to FDA-approved treatments, more than 2,000 individuals with early-stage Alzheimer’s transition to a more advanced stage of the disease where they are no longer eligible for treatment.

“People living with early-stage Alzheimer’s cannot afford to wait, they deserve access to FDA-approved treatments now while they can still slow progression and allow us to live independently for a longer time,” said Brian Goughan, of Chicago, IL, who was diagnosed with mild cognitive impairment due to Alzheimer’s disease in 2020. “It’s unfair and discriminatory how CMS is treating people living with Alzheimer’s.”

Currently, there are two FDA-approved treatments for early-stage Alzheimer’s, including mild cognitive impairment due to Alzheimer’s disease. Both approved treatments — and a third treatment, seeking FDA-approval — have been shown to slow the progression of Alzheimer’s disease during the earliest stages of the disease.

Access to these treatments, however, remains severely hampered by an unprecedented CMS decision not to cover payment for the drugs without patients enrolling in additional clinical trials. Currently, Medicare covers all FDA-approved drugs with the glaring exception of the two Alzheimer’s treatments.

“The Alzheimer’s Association has been leading the way in calling on CMS to reverse its unprecedented and unjust policy. Now, we are inviting Illinois residents to join us and add their voices to our call and we need to listen to people living with the disease. They deserve the right to access FDA-approved treatments now, while they still can, if they and their doctor decide it is right for them,” said Delia Jervier, Executive Director of Alzheimer’s Association, Illinois Chapter “There’s a groundswell of support for CMS to reverse its decision — from bipartisan members of Congress to 26 attorneys general to physicians and scientists and patients and families. The CMS policy is wrong and people living with Alzheimer’s are counting on us to get this decision reversed.”

Since the initial CMS decision in April 2021, the Alzheimer’s Association has urged CMS to reverse course. A rally outside the White House in March attracted nearly 900 supporters. Just last month, the Alzheimer’s Association conducted similar rallies outside 10 regional CMS offices and the Health and Human Services office in Washington D.C., bringing together thousands of volunteers impacted by the decision.

The 50 state rallies during Alzheimer’s & Brain Awareness Month will build on the momentum of previous rallies and growing public sentiment to make Alzheimer’s treatments accessible. The rallies will bring together people living with Alzheimer’s directly affected by the CMS decision, as well as their caregivers, families, Alzheimer’s volunteers and the public.

In addition, the Alzheimer’s Association invites Illinois, residents, to sign this online petition urging coverage of FDA-approved Alzheimer’s treatments now. To date, the petition has generated more than 20,000 signatures.

More than 6 million Americans are living with Alzheimer’s disease — a leading cause of death in the United States. Additionally, more than 11 million family members and friends provide care to people living with Alzheimer’s and other dementias. In Illinois, there are more than 233,000 people living with Alzheimer’s and more than 312,000 family members and friends caring for them.

During Alzheimer’s & Brain Awareness Month, the Alzheimer’s Association is encouraging individuals who are experiencing cognitive issues to schedule an appointment with their doctor. An early diagnosis of Alzheimer’s provides a range of benefits for the individuals, including access to new treatments.

In recognition of Alzheimer’s and Brain Awareness Month this June, the Alzheimer’s Association is turning the Chicago Skyline purple this week thru June 10. Few cities can boast a skyline as iconic as that of Chicago’s: powerful buildings that display how the city rose from the ashes of the 1871 Chicago Fire, the city later becoming known for inventing the skyscraper. Two buildings that shine brightly during Alzheimer’s Awareness Month are the Willis Tower (formerly known as the Sears Tower, 1,450 ft.) and the John Hancock Center (1,128 ft.), both completed in the 1970s thanks to an architect named Bruce Graham, who passed away from complications of Alzheimer’s in 2010.

Graham became the renowned architect of the iconic skyline duo of the Willis Tower and the John Hancock Center, combining great height with a touch of magic. The Willis Tower, located on Wacker Drive, along with Michigan Avenue’s John Hancock Center, have lit up the Chicago Skyline, going purple during Alzheimer’s and Brain Awareness Month in support of all those affected by the disease. 

The Chicago skyline was illuminated purple to raise awareness for Alzheimer’s and Brain Awareness Month (June) and The Longest Day. From Sunday, June 4 to June, June 10, buildings were encouraged to light the signature color of the Alzheimer’s Association and display the slogan “ENDALZ.” The initiative was spearheaded by our Illinois Chapter Concern and Awareness Committee in partnership with the Building Owners and Manager Association of Chicago (BOMA). Their Illuminate Chicago Lighting Program was created ten years ago to build support for charitable causes. We are grateful for their support as we raise funds and awareness to put an end to Alzheimer’s and all other dementia. 

Participating buildings and businesses include Soldier Field, Blue Cross / Blue Shield, Prudential Plaza, Wrigley Building, Willis Tower, Navy Pier (Ferris Wheel), United Center, Salesforce Tower,  Brittanica Building,  Merchandise Mart, and 311 South Wacker.

Throughout June, the Alzheimer’s Association is offering additional programs and events to raise Alzheimer’s awareness and to promote brain health...

·       Free stage play VIP Reception: Unforgettable – June 9 at 6:30 P.M. at DuSable Black History Museum and Education Center 740 East 56th Place Chicago, IL 60637: This will be an “Unforgettable” night. Meet Alzheimer’s Association CEO, Dr. Joanne Pike, and engage with community organizations and partners, and learn about the Association’s strategies in bridging the health disparities gap for those populations disproportionately affected by Alzheimer’s disease and other forms of dementia. Special performance by ADRIAN CRUTCHFIELD (adriancrutchfield.com) http://bit.ly/UnforgettableVIP_Reception

·       Free stage play: Unforgettable. The dynamic and emotional play showcases the effects of caring for a loved one with Alzheimer’s at the DuSable Black History Museum and Education Center on June 10 at 11:00 A.M. and 3:00 P.M. 740 East 56th Place Chicago, IL 60637 You must register for free tickets at: https://unforgettableplay.com. 

·       Fight the Darkness of Alzheimer’s on the Day with the Most Light – The Longest Day. The Longest Day is the day with the most light — the summer solstice. On June 21, people from across the world will fight the darkness of Alzheimer’s through a fundraising activity of their choice. Whether you’re participating at home, online or in-person, we have plenty of fun ideas to engage family and friends in The Longest Day. Throughout the month and culminating on June 21, Longest Day participants will bake, bike, hike, golf, knit, play bridge and participate in other favorite activities to raise funds and awareness for the care, support and research efforts of the Alzheimer’s Association. For more information and to register: visit alz.org/thelongestday.

More than 6 million Americans are living with Alzheimer’s disease — a leading cause of death in the United States. About 1 in 9 people (10.7%) age 65 and older has Alzheimer’s dementia. Alzheimer’s is a leading cause of death – Deaths due to Alzheimer’s have increased an alarming 145% since 2000 – 13% here in Illinois. Older Black Americans are twice as likely and Hispanic American are one-half more likely to have Alzheimer’s or dementia. Additionally, more than 11 million family members and friends provide care to people living with Alzheimer’s and other dementias. In Illinois, there are more than 233,000 people living with Alzheimer’s and more than 312,000 family members and friends caring for them.

By: Caroline Johnson 

It was a chilly winter day. I turned to write a homework assignment on the whiteboard for my English students. As I wrote the date, January 26, I froze: It was the one-year anniversary of my mother’s death. I thought about her funeral and how the soil was too frozen at the time to cover the casket. I wondered if it had thawed now. I wondered where she was.

As the family caregiver for both of my parents, I witnessed firsthand the traumatic effects of memory loss. My father’s dementia was the byproduct of a rare neurological disorder; my mother had full-blown Alzheimer’s. As a way to grieve their loss, I wrote poems over a 15-year period. These poems were published this past May in a book dedicated to caregiving, entitled The Caregiver (Holy Cow! Press), which contains poems about Alzheimer’s, Parkinson’s, hospice, and many other concerns I encountered on this roller coaster journey of care. The poems became a sort of calling for me, and I am including some excerpts from them in this article.

A mother of five, my mother was a very creative, resourceful and extroverted person who made friends wherever she went. Even with her Alzheimer’s, she remained gracious, despite the cruel nature of the disease. She would “wander into each guest’s memory, making friends with strangers, whistling a tune each day” (“Borders”). Despite Rheumatoid Arthritis and a shunt surgery, she remained strong.

It was a gradual progression. She could never remember the lines in a play she was acting in. This morphed into more forgetting, then delusions, then wandering. Her home became foreign to her, and we had to put a lock on the door:

“I’m going home,’ you say confidently, in a cloud of delusion, as you step over yesterday’s daffodils, and walk away from the moon.”  (“Wandering”)

It was about that time when she began thinking there was another Caroline, one that was perhaps both evil yet also generous. I describe this in my humorous poem, “Donut Holes”:

“Do you know someone has given me a whole closet of clothes? Caroline, did you do that? … Or was that the other Caroline?”

Towards the end, my mother needed to be spoon fed. I describe this spiritual act in the poem, “A Mother’s Love”:

            “The nurse sits her up in bed.

              She winks one eye open and I feed her

              A spoonful of stuffing and gravy.

              With brown eyes she smiles, and the smile

              Lasts me the whole day—more than 77 years,

              More than one week in a hospital bed,

              More than a generation,

              More than the love a mother can show.”

My mother was a hospice volunteer in her younger days. Both my mother and father were on hospice at the end, and we welcomed the support, though it is always difficult when you witness someone dying: “Seeing Mother as Raggedy Ann / in hospice clothes / shakes me up, rattles my bones” (“Conjuring”). I was holding her hand when she passed. Like so many mothers, she wanted to make sure everybody else was satisfied before she could let go.

During the last year of my mother’s life, my husband and I participated in a Walk to End Alzheimer’s. We also organized our own private bike-a-thon, “Ride for Gladys.” She passed away shortly afterward.

I don’t remember when I wrote the poem, “Alzheimer’s Dream,” but I’m sure it was during the middle of her illness when she was struggling with delusions and trying to stay sane. In the poem, I write about how she has become a stranger to me; nonetheless, I, like so many daughters of mothers with memory loss, craved her company:

            “Let’s sit down here and talk.

              Let’s look at the weather.

              Let’s do everything to be together.

              Let’s try not to remember,

              Have a drink to forget

              That we ever once met a lifetime ago

              When I called you mother

              And needed you so.”

I still miss her, but she instilled in me a love of creativity, art, music and people. I will always treasure her special gifts, and these came through even when she faced the most devastating challenges.

Caroline Johnson has two poetry chapbooks, Where the Street Ends and My Mother’s Artwork, and more than 100 poems in print.  Nominated for the Pushcart Prize and Best of the Net, she won 1^st place in the Chicago Tribune’s Printers Row 2012 Poetry Contest. She leads poetry workshops for veterans and others in the Chicago area. One of her favorite activities in the past was watching James Bond movies with her father. Visit her at www.caroline-johnson.com.