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Article by Morgan Stanley and provided courtesy of Barbara Finder. A multitude of economic, social and cultural factors have given rise to many middle-aged Americans providing financial, emotional and physical support for their young children, adult children and parents at the same time, often with multiple generations living under one roof. Caring for children while caring for parents, while also trying to manage your own personal and professional priorities, can be challenging. One of the main concerns facing the Sandwich Generation is: “How do I plan for my own future – my own retirement needs – while I’m also balancing the immediate needs of my family?” By addressing the three questions below, you can start to find your balance. What Are My Needs? Flight attendants tell you to put on your own oxygen mask first before helping others and this is no different. The first step is to create a personal budget. Determine Your Income. Specifically, you’ll want to determine your average monthly income. If your income varies by month, estimate by averaging the past six to 12 months. Evaluate Your Emergency Fund. Maintaining access to cash in a checking or savings account in case of an emergency is essential. Your emergency fund should be separate from your day-to-day cash, and if you can, put away enough to cover at least three to six months’ of expenses. Plan for Savings & Surplus. If you have surplus in your budget, it may be challenging to decide what to do with it. As a dual caregiver, there are an unending number of things you could do with that money, but sometimes the most important thing is to pay yourself first. A good rule of thumb is to save for your retirement ahead of your children’s college funds and your parents’ potential future care needs. Be sure to work towards paying off any debt and evaluate your insurance needs. What Are My Children’s Needs? One of the biggest expenses of raising a child is education. If they’re young, consider whether private school tuition is going to be necessary. There may also be the added expenses of books, extracurricular activities and tutors. If you can swing it without sacrificing your own retirement needs, you may be able to start investing in a 529 College Savings plan, and begin investing with a minimum. If your children are planning to move back home with you after college, it’s important to set expectations. Talk through everything from rent and shared expenses to division of household chores. Don’t neglect the impact this situation will have on your own retirement goals. What Are My Parents’ Needs? Navigating the needs of your parents can be emotional and tricky. But staying in the loop on what your parents have saved, where it is, what plans they have for the future, and who their Financial Advisors are, will help protect their money and yours. You’ll also be better able to make decisions on their behalf in case of an emergency. Potentially assisting your parents with budgeting for their current and future needs is important. The good news is that you can use the same process you used to create your own budget. Include discussions about their desired standard of living – and what changes would need to happen, given financial constraints. Don’t forget the hard questions: How long can my parents stay in their home? Can they afford home health care? Should they live with me? What about assisted living? Additional care? These are all discussions that need to happen before a move is required. Finding Your Balance Dual caregiving can be a balancing act. Don’t forget to make yourself a priority. By creating a clear picture of the needs of every generation under your care, you can map out strategies and solutions that help your entire family thrive. And if you need additional guidance on how to balance this big picture, don’t hesitate to reach out to a financial advisor for help. Barbara Finder is a Financial Advisor in Chicago, IL at Morgan Stanley Smith Barney LLC (“Morgan Stanley”). She can be reached by email at Barbara.j.Finder@morganstanley.com or by telephone at 312-648-3555. The information contained in this column is not a solicitation to purchase or sell investments. Any information presented is general in nature and not intended to provide individually tailored investment advice. The strategies and/or investments referenced may not be suitable for all investors as the appropriateness of a particular investment or strategy will depend on an investor’s individual circumstances and objectives. Investing involves risks and there is always the potential of losing money when you invest. The views expressed herein are those of the author and may not necessarily reflect the views of Morgan Stanley Wealth Management, or its affiliates. Morgan Stanley Smith Barney, LLC, member SIPC.

Holly at the 2021 event with her Walk team. For over a decade, Holly Koontz has participated in the Peoria area Walk to End Alzheimer’s in honor of the family members she has lost to Alzheimer’s disease. She sits on the Marketing Committee and provides day-of event support year after year. Participating in Walk is her way of maintaining hope for a future without the disease. Holly’s grandpa as a young man. Holly has witnessed family members face Alzheimer’s disease and dementia since she was in her teens. “I was a caregiver for my grandpa when I was in high school to give my grandma a break on Sundays. It was my first encounter with Alzheimer’s…My grandma did so much to keep him home instead of a care facility.” Tragically, Holly’s exposure to the disease didn’t end there. Holly saw multiple aunts and uncles succumb to the disease, and one of her uncles is currently living with the disease. She knows her experience is not unique. “This impacts most every family I know at some point in time.” Holly as a baby, held by her Grandma Ruby Garber. “I’ve lost two grandparents on opposite sides of my family [to the disease],” shares Holly. “I fear that one or both of my parents will get it as there is so much family history.” “This disease is so very sad,” Holly says. “The person with it may not know what is happening but the loved ones see every day how that person is lost within themselves.” Participating in the 2022 Walk to End Alzheimer’s – Peoria Metro is Holly’s way to “memorialize my family members who have been lost to the disease and honor those who currently are battling it.” This will be her thirteenth year involved in the event. Taken at the first Walk that Holly’s blended family participated in. “It gives me hope that treatments will be created and ultimately a cure,” shares Holly. “Someone once said to me that it’s so easy for people to donate to childhood charities or animals but we often forget about the issues that impact the elderly.” She acknowledges that all of these causes are extremely worthwhile, but Alzheimer’s has special meaning to her. It’s where she focuses most of her energy. For Holly, it’s a way “to thank my grandparents and aunts and uncles for all they did for me.” Honor your loved one by registering for the 2022 Walk to End Alzheimer’s in your community. Get started at alz.org/walk

For Mahomet resident Marie Burge, her involvement with the Alzheimer’s Association has enhanced her understanding of the term “awareness” – both awareness for the condition itself, and awareness for the precious moments that she shares with her dad . “Alzheimer’s/dementia is incredibly hard to witness,” says Marie. “Especially when it takes away a person you love.” Marie chooses to focus on the positive side of life’s circumstances rather than the negative since her father’s Alzheimer’s diagnosis. She says she is “truly thankful for every moment” that she has with him. Marie shares that “just being with him, hearing his voice, seeing his handsome smile, holding his hand – those are the moments I am more aware of and cherish daily.” The 2022 Walk to End Alzheimer’s – Greater Champaign/Urbana will be Marie’s fourth year involved in the event. She has been consistently involved in the Champaign, Illinois Walk as a participant and team captain for Team Pops!! in honor of her father. This year will be different for Marie: she recently joined the Volunteer Committee and is excited to be involved in the planning of the event. Raising awareness for Alzheimer’s disease and other forms of dementia is of great importance to Marie. She shares that, while this illness is incredibly hard to witness, she feels strongly that it cannot take away the memories and feelings that we have for our loved ones. “I try not to let Alzheimer’s define who my dad is ‘now’ because I know that is not truly him,” she shares. “The imprint/legacy he leaves on this world is a blessing that defines him much more than Alzheimer’s!” Help Marie and Team Pops!! raise awareness at the Champaign Walk to End Alzheimer’s, or visit alz.org/walk to find a Walk to End Alzheimer’s event in your area. Contributor: Amanda Wisinger, Alzheimer’s Association Volunteer

Written by Carmen Molinaro Alzheimer’s disease has affected me in the most life-altering way possible. Alzheimers took away my best friend and life partner of over 35 years: my wife, Susan. I had to watch as it took simple physical coordination away from a once world-class marathon runner. It took my future retirement plans and threw them out the window. The disease took my children’s mother and best friend; it took away a friend to many people; and it took a wonderful human from this earth. The saddest thing to deal with was watching the disease progress without being able to do anything about it. It felt like we lost her twice. Susan first became a different person than we all knew, and then physically passed. The single and only positive way Alzheimers has affected my life is that I now have a much greater appreciation of life, my family and my friends. I have always said “I love you” to people, but I find myself saying it more often. Don’t wait. Say it to those that mean so much to you. We found tremendous support from Susan Frick and the Without Warning support group. Those get-togethers were so good for both my wife and myself. As a caregiver it was comforting to know I wasn’t alone with my questions, confusion, exhaustion and concern about the care we were all trying to give our loved ones. The bonding that took place between caregivers was swift, strong and comforting. We found others in similar situations that could offer advice and would understand our pain, our fears, and our frustration. An example of the bonds we created took place around Christmas. I was in my kitchen in Glen Ellyn having some melancholy moments about dealing with the holiday and trying to make sure my family stayed upbeat as it would mark one year since my wife’s passing. I got a buzz that someone was at the door, so I went down to the entry and there was a gentleman, Tom, from the Without Warning support group. He was there with a box of cookies and a hug just to let me know someone was thinking about me. I didn’t get a chance to tell him, but that one simple act carried me through the holiday with a smile in my heart. Don’t try to deal with Alzheimers alone. Get in a support group , go to therapy and lean on family and friends. I started a fundraiser with The Longest Day in honor of Susan. I organized a golf outing–which seemed like a logical thing for me as I was retired from the golf business. My original goal was to have about 100 players and try to raise about $10,000. As things got into motion I quickly realized I had many more friends and supporters in my life! First, I got a big boost from the golf club where I work part-time in the summer, Boulder Ridge Country Club. Thanks to previous owners, the Plote Family, and the current owners, The Heritage Golf Group, they afforded me a generous discount on the complete package of golf, lunch and dinner. The fantastic staff at Boulder Ridge gave me so much help and support. I cannot imagine the event running as smoothly as it did without them at my side. Many of my fellow golf professionals donated gift certificates for rounds of golf that we auctioned off. Many friends from our past and present showed up to participate, sponsor, donate or help with registration and setup at the event. My fellow Rotarians from Buffalo Grove played and donated to the fundraiser. One super generous Rotarians case donated all the signs, banners and bag tags for the day’s events. Former employees of mine came from all over. Some who had worked for me during their high school and college days flew in for the event, some who worked with me up until my retirement showed support. The members of Boulder Ridge Country Club were and continue to be such great friends–not just during the event, but in the years preceding the event when they offered their friendship, support and love. Needles to say I had my family and three of my best friends urging me on and holding me up when I would wobble a bit. When it was all said and done my event had 186 golfers and nearly 200 for dinner. The final amount raised was over $32,000 . This year’s event takes place on Monday, August 22, 2022 and my goal is to top that amount. One of my all time favorite movies is Shawshank Redemption. One of my favorites lines is, “You got to get busy living or get busy dying.” In dealing with the loss of Susan, the idea of “get busy dying” would have been to sit and feel sorry for myself, my family and Susan–to sit in my misery without doing anything. That did not seem like an option for me nor one that would make Susan or my sons proud of. I chose to “get busy living” by helping raise awareness about Alzheimer’s disease and raising funds for Alzheimer’s research so that hopefully the next generation doesn’t have to deal with this horrible disease. As the population continues to live longer, Alzheimer’s unchecked will start affecting more and more of us. If we put people on the moon and bring them back, we can do this: we can end Alzheimer’s in our lifetime. More awareness means more funds raised, and more funds raised means hope for the future. The thing I would like people to understand about Alzheimer’s disease is that it can happen to anyone. My wife Susan had no family history of Alzheimer’s. She exercised every day, she ate healthy, stayed mentally active and could have been the poster child for someone least likely to be afflicted, especially at the age of 54. It can happen to anyone and that is why it is so important to raise awareness. If it does happen to someone in your care, please do not face it alone. Join a support group, reach out to family and friends and know that you are not all by yourself. Sometimes people are a little hesitant to reach out to you first because they don’t know what to say or do. If you reach out to people first you will be amazed how much just having someone to talk to can help. I was always fortunate to have friends I could count on, but the depth and sincerity of those friendships amazed me and certainly carried me though those most difficult days.

“I believe that hope and action are contagious,” shares Illinois Women Conquer ALZ (IWCA) member Patricia McClure Chessier. Patricia served as Programs Co-Chair on the IWCA Steering Committee and now participates in events such as Walk to End Alzheimer’s and Power of Purple . She wrote two books providing caregivers with resources and tools for better communication. Patricia stays involved with the Alzheimer’s Association by educating and fundraising in honor of her mother. “My mother was the ‘rock’ of our family,” shares Patricia. Her mother lived with Alzheimer’s and eventually passed away due to complications from the disease. “It had a great impact on our family…I was the caregiver for my mother, along with my husband Eric who helped, prior to her needing a higher level of care when the disease progressed.” Patricia’s mother attended an Adult Daycare Program while Patricia built her professional career. “I was able to take my mother to the daycare during the day while my husband and I went to work. The program was great because it gave her a routine, she remained active and was able to socially engage. “I joined IWCA because I wanted to be a part of a group of women who had similar experiences.” She also likes the fact that the women within the group are a great support and resource to each other. “During the time I was my mother’s caregiver, IWCA didn’t exist,” says Patricia. “However, I am confident in saying the activities IWCA provides are priceless. The IWCA Programs committee brings in speakers and panels who are very knowledgeable about Alzheimer’s, caregiving and how to handle legal matters . Patricia was the special guest at one such IWCA event. She discussed her memoir Losing a Hero to Alzheimer’s: the Story of Pearl at an intimate author event. In her book, she covers her own experience as a caregiver for her mother and common warning signs of the disease. Patricia wrote a second book, A Caregiver’s Guide for Alzheimer’s and Dementia , where she gives readers nine key principles on how to be effective caregivers by avoiding power struggles, living in the moment and looking at behaviors as a form of communication. A major theme in both of Patricia’s books is that “there is life after the diagnosis.” “I also enjoy the social activities [with IWCA] because sometimes you need to do ‘fun’ things to give yourself a mental break when you’re a caregiver,” says Patricia. “The women in IWCA know how to have clean fun and the social event benefits the fight against Alzheimer’s.” Patricia hopes to continue sharing her story to give others hope. Through IWCA, she plans to meet new people and participate in activities that will be fun and educational. She encourages people to get involved, to bring their networks to an Alzheimer’s Association event or sponsor IWCA’s signature fundraiser Power of Purple this June. Sign up for Illinois Women Conquer ALZ to join Patricia in the fight against Alzheimer’s disease. Nominations are also open for the 2022 Family Caregiver Award, which will be given at Power of Purple on June 12, 2022.

A lot has changed for Laura’s mother since her Alzheimer’s disease diagnosis, but one thing that hasn’t changed is her love of singing. In fact, both her mother and grandmother used music as a way to connect to their family during their struggles with Alzheimer’s disease. “Both of them loved singing, so that is one thing I did with my grandmother that I still do with my mom,” says Laura. “She even sings harmony sometimes.” Since Laura’s family has been greatly impacted by this disease, Laura has participated in the Walk to End Alzheimer’s for the past three years. She walks to demonstrate how meaningful it is to care for her mother. “I have been blown away with how generous my friends have been to support us,” Laura shared. She was surprised by how many of her friends also have family members who are impacted by dementia. People living with Alzheimer’s and dementia experience a variety of symptoms , and the degree to which a person’s life is affected can be severe. Such is the case with Laura’s mother. Laura saw her mom’s ability to care for herself gradually decline to the point that it felt like a burden on her dad, who had been her mom’s best friend for 70 years. It was very hard at first when they had to change their living arrangements so that Laura’s mom could receive the skilled nursing care she needed. But as her mom’s needs continue to increase, Laura saw it is a blessing that both her parents were happy in their new environments. “Dad read Mom poetry and sang to her over an Alexa device during the pandemic and now he visits every evening.” Laura realizes the day may come when her mother is no longer able to speak, but she is hopeful that she will continue singing even beyond that day. Laura points out that 1 in 3 people have cognitive issues as they age, so many people and their loved ones will be affected by Alzheimer’s or dementia. “If it’s not you personally, it will be a family member,” says Laura. “If it’s not a family member, it will be a neighbor, a congregation member, or a friend.” She believes that if communities can understand the frequent impact Alzheimer’s disease has on people’s lives, they can provide better support and compassion for those with the disease and their families. “The work that the Alzheimer’s Association does is critical for finding pharmaceutical solutions that will forestall cognitive decline as well as reducing the stigma associated with Alzheimer’s.” Her participation in Walk to End Alzheimer’s is one way to help realize that goal. In addition to the Walk to End Alzheimer’s, Laura has participated in the Reason to Hope luncheon which benefits the work of the Alzheimer’s Association. The annual one-hour event gives attendees a chance to learn about the work the Alzheimer’s Association does, including the support it provides to families like Laura’s. It also highlights some of the latest advances in research related to Alzheimer’s disease. To find out more about the Reason to Hope Luncheon, please click here . To participate in the Walk to End Alzheimer’s and get more details about creating or joining a team please click here . Contributor: Ellen Grover, Alzheimer’s Association Volunteer

Ryne and his mother holding hands. “This picture is very important to me and captures a very special moment,” confides Volunteer Advocate Ryne Hunt. Up until now, the only person who had seen it was his wife. The photo features Ryne and his mother grasping hands. His mother lived with dementia for seven years. The picture was taken the first day Ryne visited her care facility after roughly five months of separation due to visitation restrictions. That was one of the final days when Ryne was able to hold his mother’s hand: she passed away mere days after the snapshot was taken. Ryne joined the Alzheimer’s Association Illinois Chapter policy efforts as a Volunteer Advocate two years ago. Ryne’s mother was diagnosed with dementia at age 59 and her journey with the disease lasted seven years. “At such a young age, mom was still very much physically strong,” he shares. “Alongside my dad and brother, we all three did what we could for her and tried to navigate the challenges the disease brought. “More than anything, I want people to know that Alzheimer’s doesn’t just affect the one with the disease but the entire family. The best way I can describe it is it’s like you have to deal with losing your loved one repeatedly. They may be ok or better one day and the next day or even hour they have no idea who you are or where they are.” Ryne, his brother and their mother. Ryne, his brother and his father shared the caregiving responsibilities. Watching his mother’s symptoms progress took an emotional toll on all of them. “We knew through it all mom was not the mom or the wife we all knew our entire lives,” says Ryne. “We all played our part and, in the end, when mom left us, I think we all looked back and at each other with a different take on Alzheimer’s/dementia. “Fighting through the emotions of it all and knowing ultimately what the result [of my mother’s condition] would be was so hard. It’s a cruel disease, but it has given me a drive to fight and to help not only find a cure, but build awareness and help family caregivers.” Since becoming a Volunteer Advocate, Ryne has lobbied his local leaders to support legislation to make Illinois a more dementia capable state. “Funding for research is so important,” shares Ryne. “It’s the key to fighting the battle. Physician training is something that’s been improved upon, but I think more is always better.” Ryne volunteers so that dementia capable policies benefit all Illinoisians, not just those with access to large health systems. He emphasizes that “people and caregivers in smaller communities where big hospital access may be limited need to know they can discuss Alzheimer’s with their family physicians and find the help, resources, and direction they need.” Ryne and his mother. Last year, Public Policy staff, state legislators and volunteer advocates helped pass Senate Bill 677—which ensures ongoing dementia training for healthcare providers. It is the strongest dementia-specific education mandate enacted for healthcare providers in the country. In 2022, they are expanding their advocacy to guarantee dementia training for other professionals who serve those living with a dementia, including paramedics. Ryne is participating in this month’s Illinois Week of Action (February 22-24) to honor his mother, his community in Harrisburg and all families facing dementia. He will join together virtually with volunteers across the state for the Opening Ceremony at 6pm on Tuesday, February 22. The event will be held via Zoom, where advocates, staff and legislators will share why they fight to end Alzheimer’s. “No one wants to think about or ever have to experience Alzheimer’s. The disease is devastating to a family…Caregiver support is also very crucial and will better help the family and patient through the fight.” The Alzheimer’s Association offers support groups, Care Consultations and a 24/7 Helpline (800.272.3900) for families and individuals impacted by the disease. “In the end though, we all must come together to fight. It’s a common ground we can all agree on.” Join Ryne for Illinois Week of Action, February 22-24. Share your story and compel our state leaders to prioritize the fight to end Alzheimer’s—all from the comfort of home. Learn more and register at endalzillinois.org.

For Arielle Thompson, Walk to End Alzheimer’s highlights an opportunity to share light and positivity with others. Her grandmother was diagnosed with dementia in 2013 and both Arielle and her aunt were her primary caregivers . When Arielle’s aunt suffered a heart attack in 2018, Arielle became the sole caregiver to her grandmother. She was also raising her two children. Arielle felt that, while being a caregiver for her grandmother and children was tough, watching her grandmother struggle with this disease was even harder. “I tried to connect with moments that triggered happiness within her,” she shared. “We sang, I reminded her of stories, we walked, we laughed, we cried… but most importantly, we made more memories that I would forever cherish. ” Arielle focused on the positive moments within the struggles. Her experience with her grandmother led her to understand that supporting someone living with Alzheimer’s or dementia is more than just financial support. “The physical, mental, and emotional impacts of this disease can be greatly challenging,” she says. “These challenges require support…the support of each person is important.” Arielle found help through the free programs and services offered by the Alzheimer’s Association’s Illinois Chapter. Arielle is grateful for the opportunity to share her story with others. She has been a volunteer with the Association since 2015, and she is currently serving as a Member of the Logistics Committee for the Chicago Walk to End Alzheimer’s. She is also an annual participant in The Longest Day . Arielle walks because it reminds her of all of the reasons why her family should remain hopeful. She finds inspiration from the stories of other families impacted by dementia and feels encouraged by joining together with other supporters to raise awareness. Arielle says, “I will continue to fight and continue to encourage others to do so as well because we all deserve the opportunity to share in [the] victory over Alzheimer’s!” Visit alz.org to register for your local Walk to End Alzheimer’s event. Contributor: Amanda Wisinger, Alzheimer’s Association Volunteer

What started as a social call blossomed into a passion for Michelle Carlson. Her friend, Mary Wasik, invited her to an educational event with the Alzheimer’s Association at her law firm. There, Michelle met other women impacted by Alzheimer’s disease and dementia. She found a meaningful community, helpful resources and hope for a future without the disease. She is now an Illinois Chapter Board Member, Chair of Illinois Women Conquer ALZ (IWCA) and more committed than ever to the fight against Alzheimer’s. Michelle’s mother, Miriam Hall Michelle’s mother has been living with dementia for ten years. “Before that, she was extremely bright,” Michelle shares. “She had a chemistry/math degree and was a chemist prior to having four children…She has always been such an amazing and fun mom.” Today, Michelle’s brother and sister-in-law live with her mother and handle the day-to-day caregiving in Texas while Michelle stays connected through phone calls and long visits. “I know it has been a long road for my brother, sister-in-law and their family,” says Michelle. “They have been amazing…I am convinced that [their caregiving] is why she is still alive.” Michelle’s mother has always prioritized family. “I wish I could have had more time with her as she was, but I’m glad that I have time with her today,” shares Michelle. “I take care of her 2-3 weeks a year and really do appreciate that time…In the beginning of her disease, she would forget things…She still repeats herself a lot and we mostly assure her that she is okay, or we go along with her unique thoughts. “We need to treat all those diagnosed with respect; their condition is not their fault. There are times when my mom says things that are quite funny and often catch us off guard. It’s important to share the laughter together too!” Michelle is assisted and comforted by what she has learned through the Alzheimer’s Association. The website alz.org has a wealth of resources and education, and the 24/7 Helpline is available anytime, free of charge at 800.272.3900. “There are many things I have learned over time from my involvement in the Association, such as education on the disease, the science, the research trends,” says Michelle. “We have had speakers on all the issues from medical, legal, types of care, and the importance of exercise and nutrition. I have met doctors that treat the disease and listened to how they approach patients. “This disease has a major impact on women, and especially Black and Hispanic women. Almost two-thirds of Americans living with Alzheimer’s are women and they are also more frequently the caregivers. If you have a job, it takes a bigger toll on the family’s source of income. It is stressful to care for a loved one with the disease. For those who don’t have a loved one living with the disease, it is very common to know someone who does. We hope that one day there will be better treatments and a way to delay the onset of the worst aspects of the disease. Ultimately, we want to find a cure.” Michelle (left) with guest at Reason to Hope Oak Brook 2019. After her initial encounter with IWCA, Michelle continued to deepen her involvement with the Alzheimer’s Association. She attended IWCA’s signature Power of Purple garden party event, which led to her joining the group’s Steering Committee. She has hosted a table at Reason to Hope, participated in the Walk to End Alzheimer’s and joined the Illinois Chapter Board of Directors. “I would like to try to make a difference in as many ways as I can,” shares Michelle. The greatest part of her work, though, is connecting with people who know what she’s going through. “I love the learning, the stories, the sharing and the amazing group of women and staff that I have met…Learning that you are not alone in dealing with the disease is cathartic. “We need to slow the pace of the disease and ultimately find a cure. When you get involved, it gives you a chance to make a difference. Working together gives us an opportunity to make a bigger difference. “I can’t be with my mom every day. This is my way of trying to have a positive impact. I hope to continue to build awareness, refer those who need assistance to the Alzheimer’s Association, listen and share more about how the association and our members can help others dealing with the disease.” Join Michelle and a passionate community of women advocating, educating and fundraising on behalf of Illinois families facing Alzheimer’s. Sign up for IWCA, and mark your calendars for their signature event Power of Purple on Sunday, June 12.

“Latino families do not call it what it is,” says State Representative Barbara Hernandez of the 83rd District. She says that many minority communities accept Alzheimer’s disease and dementia as a normal part of aging. “I would get mad,” shares Representative Hernandez. “I would say, ‘Call it what it is. It’s dementia. It’s Alzheimer’s.” She has watched her grandmother in Mexico struggle with the disease and witnessed its impact on her family. The experience inspired Rep. Hernandez to advocate for a more dementia capable Illinois. Rep. Hernandez is the daughter of first generation immigrants from Mexico and a lifelong resident of Aurora, Illinois. Her parents were undocumented for 21 years, which prevented them from being able to travel home. Rep. Hernandez connected with her extended family through letters, phone calls, pictures and social media during that time. She was able to meet her grandmother in-person in 2014 when her parents became residents. The signs of her grandmother’s dementia were already visible. She had trouble finding the right words and forming sentences.   “Whenever we would talk I would say, ‘Hey, I think my grandmother has early signs of dementia, maybe she should go to the doctor.’ I was always told, ‘Oh no, she’s just forgetting a few things; she’s old.’” Her extended family attributed her grandmother’s forgetfulness to her age. Rep. Hernandez didn’t consider it her place to argue. The experience weighed heavily on Rep. Hernandez after returning to Illinois. While she wasn’t face-to-face with her grandmother’s condition, it still had a tremendous impact on her. “I get to stay away from that and go back home to Aurora and leave everything behind,” she shared. “But it’s something I always have in my mind.” Rep. Hernandez and her father returned to Mexico in November 2021. They were anxious to see her grandmother again: she had struggled with isolation and depression as a result of the COVID-19 pandemic. “When I went to my maternal grandma’s house, that was the hardest thing I’ve ever dealt with,” Rep. Hernandez said with emotion. “She thought I was her daughter.” “It was very upsetting to see, because of course back in 2014 I remember my grandma who could talk to me and knew who I was. And now, she thought I was a baby or her daughter.” Rep. Hernandez could recall the laughter and trips they shared, but her grandmother could no longer remember her. “You’re erased from their life. You’re still there, you can still hold their hand. However, in their mind you never existed,” she says. “You’re left alone thinking, how can this happen?” Rep. Hernandez was appointed as the State Representative for the 83rd district in 2019, but her service to immigrant families started in college. She created a virtual resource board for her community where she gathered job opportunities–a program that is still in use today. Rep. Hernandez meets many constituents who have been impacted by Alzheimer’s and dementia through her work as a public servant. From what she sees, the disease is becoming normalized; families simply accept the symptoms as a part of normal aging.  “I would say, ‘Call it what it is. It’s dementia. It’s Alzheimer’s…Why are we just normalizing it? How about we figure out how to fund science to prevent this from happening. How about we try to educate our doctors, our caretakers, our family members on this issue? ”  “That’s why I focus on legislation now,” Rep. Hernandez says. She is “very proud” to have supported legislation such as Senate Bill 677, which was signed into law in 2021 as the first bill in the nation to ensure ongoing dementia training for healthcare providers. To date, this is the strongest dementia-specific education mandate enacted for healthcare providers in the country. “When I saw that bill, it was a no-brainer for me,” shares Rep. Hernandez. At that time, her grandmother’s condition was worsening. “That bill landed in my life at the perfect moment, where I was like, ‘Okay, I can’t do anything back in Mexico, but I can support this bill. And I can get educated more on this subject. And that’s what I’ve been trying to do.’ ” Rep. Hernandez is equally excited about the work she is doing in 2022 with the Alzheimer’s Association. “We’re carrying a bill this year that I’m hoping that we can get through. Because it’s very important that everybody gets trained, everybody is aware of the signs of dementia.” She is referring to the Community Care Program staff training bill, introduced earlier this month. Many of our most vulnerable residents with Alzheimer’s or another dementia receive home and community-based services through the Community Care Program (CCP) at the Department on Aging. Senate Bill 3707 / House Bill 4620 will ensure that education on Alzheimer’s and dementia, safety risks, and effective communication are incorporated into the annual training for these providers. This minimum standard of education will allow consistent and safe delivery of important home and community-based services to people living with Alzheimer’s and dementia. “Hopefully we can do a lot more in Illinois, and hopefully the country will catch up as well,” says Rep. Hernandez.  Join Rep. Hernandez in advocating for a more dementia capable Illinois by registering for our Illinois Week of Action (February 22-24). Gather virtually with advocates from across the state by taking quick, easy actions from home. With a click of a button, you can help better the lives of Illinoisans affected by dementia. Learn more & register at endalzillinois.org .

Many people dream of running a marathon. Steve Barbus had loftier goals. He began long-distance running at age forty and has covered over a thousand miles between racing and training. Steve ran his 30th marathon in October 2021 with team ALZ Stars in honor of his mother, mother-in-law, and two aunts. He resolved to make every step count in the fight against Alzheimer’s disease. Steve discovered a love of running in high school. He ran his first marathon in Chicago in 1991. “The crowd carries you in Chicago,” says Steve. He recalls the excitement of that first race running along Lake Shore Drive and Lake Michigan. Since that day, Steve has run a marathon almost every year. The Cadillac, Michigan resident returned to the Windy City thirty years later for one final race. Steve at the 2021 Bank of America Chicago Marathon “I promised myself—as decades went by—I’ll see if I can do them in my 60s, and then 70s,” Steve says of running marathons. He decided to “put some purpose” behind his passion, so he found the marathon’s Charity Program and supported the causes close to his heart. He first ran to raise money for leukemia research, from which his father passed away. Later, he joined the Alzheimer’s Association ALZ Stars. When his mother developed Alzheimer’s, it was challenging for Steve and his family to see her dementia symptoms. Steve would visit his mother on weekends and observe changes in her memory and behavior. “She was always such a reasonable person,” shares Steve. He was baffled by the confusion she started to show. Steve tried correcting her until one day his sister broke the news to him: “This is a different person now,” she told him. Their mother was no longer the steadfast figure they remembered growing up. That was the difficult moment Steve had to face the reality of his mother’s condition. Eventually, it was too dangerous for Steve’s mother to live on her own. The siblings called a “family sit-down” to discuss moving her somewhere she would be safer and more comfortable. Steve had watched other families struggle with caring for a loved one living with Alzheimer’s. He was thankful for how his own family unified and responded. They eventually moved their mother closer and into a care facility, where she passed away from complications due to the disease. Steve joined the Alzheimer’s Association’s ALZ Stars to prevent other families from facing the same difficulties. Steve and hundreds of other athletes raised funds and awareness for dementia care, support and research. Advancing research is key for Steve and his family. His wife, Sue, is a physician; they both understand the need for prevention, diagnosis and a cure. Steve and his wife, Sue Running for a charity gives Steve an “incentive to get out there” and motivates him as he trains for every race. Training for a marathon can feel like a “pretty selfish act” according to Steve. He is incredibly thankful to his family for supporting him through his decades of running. He mentions how runners often think to themselves, “Why did I sign up for this?” when they’re reaching the hardest point of the race. Steve shared, “That’s another thing about running for charity: you know why you’re out there.” Steve remains involved with ALZ Stars and the running community as a member of the Event Experience Planning Committee. “I’m weaning myself off in a way, because it becomes a lifestyle,” says Steve. He loved the careful attention team ALZ Stars showed their athletes last year, and he hopes to make this year even better. Their homebase at Congress Hote—mere steps away from the start and finish line—had “everything we could possibly want before and after the race,” says Steve. Steve even spoke with first-time marathoners and shared advice he gained from his decades of experience. For Steve, ALZ Stars felt like “a real team.” This year, Steve will shape the race weekend experience for future athletes and encourage them as they join the fight against Alzheimer’s and dementia. He’ll guarantee they have an unforgettable race weekend, and who knows? Perhaps Steve will dust off his shoes and tackle marathon number 31. To learn more about the 2022 Bank of America Chicago Marathon ALZ Stars team or Planning Committee, contact Tracy Collings at tjcollings@alz.org or 847.915.6025. For families struggling to communicate about their loved one’s signs of dementia, attend the virtual Dementia Conversations: Driving, Doctor Visits, Legal & Financial Planning on Wednesday, February 16, or Effective Communication Strategies and Author Valene Campbell online on Wednesday, February 23.

“I’m no scientist or doctor, but I can take my passion in music and use it to hopefully make a positive impact,” shares Chicago musician Bryan Adamick. With his band the Struggs, Bryan is fighting Alzheimer’s disease by raising awareness and funds on the road. Alzheimer’s has always been a factor in Bryan’s life. “My maternal grandfather suffered from Alzheimers in the late 80’s and early 90’s when I was in grade school,” says Bryan. “We lost my wife’s paternal grandmother to Alzheimer’s in 2013.” About 10 years ago, Bryan’s mother was diagnosed with early onset Alzheimer’s disease . She is now in an assisted living facility as she faces the advanced stages of the disease. “Alzheimer’s disease takes smart, talented, proud people and turns them into a shell of themselves,” confides Bryan. “While all illness is difficult, Alzheimer’s really puts another level of mental and emotional strain on loved ones, because it feels as though the person you knew and loved for so many years is already lost, and yet, more than ever, they need a great deal of love, care, and extra attention. ” Bryan and his family have found help through the Alzheimer’s Association. Both Bryan and his father regularly attend an Association-led support group . Support groups educate and inform participants about dementia and help attendees develop methods and skills to solve problems. “When my grandfather was suffering from Alzheimer’s…my parents told me that by the time they were older, there would probably be a cure for Alzheimers,” shares Bryan. “Fast forward 30 years and there still is no cure .” For Bryan, Alzheimer’s disease factors in his past, his present and possibly his future. “I’m now married with my own children (7 and 5 years old)…I recognize that there is still no fix in place, and with both my wife and my family prone to this disease, it dawned on me a few years ago that it’s about time I start taking action and doing my part. ” Bryan joined the fight to end Alzheimer’s through his musical talents. He is a founding member of Chicago-based band the Struggs . Bryan is a prolific songwriter for the group. He also provides vocals, bass and acoustic guitar at live shows and on their records. The Struggs took their music around the region last year through a Summer Tour of Midwest Garages. Many venues were closed due to the pandemic, so they played their blend of rock and alternative country in open garages. Bryan shared his connection to Alzheimer’s disease at every stop and collected donations . With more than 6 million Americans living with Alzheimer’s disease, the band met many individuals who had similar stories. Many fans were inspired to give. In October, the Struggs lent their energetic sound to the Chicago Walk to End Alzheimer’s. Their music was an up-beat backdrop to the day’s activities. Bryan even got his whole family involved. “My favorite part of the Walk this year was seeing my kids starting to understand a little more of what Grandma is going through,” Bryan says. “They learned about the Promise Flowers and what the colors represented and held them up in honor of their Grandma and Great Grandma.” Are you interested in using a talent or existing hobby to fight the darkness of Alzheimer’s disease? Start a fundraiser with The Longest Day .  The Struggs’ newest record Common Sense & Accidents comes out Friday, January 7. It will be available digitally on Spotify, Apple Music, Amazon and most major platforms. From www.thestruggsmusic.com : Based in Chicago, the Struggs formed from numerous different bands and musical influences to create their own brand of rock/pop/alt country weaving catchy choruses and harmonies with soaring guitar riffs and solos. Established in 2015, they have played a variety of clubs and festivals, most recently raising money for the Alzheimer’s Association on a Summer Tour of Midwest Garages while clubs were closed. In 2022, the band will release its 3rd LP entitled Common Sense & Accidents.