While there are noticeable changes that can be related to the onset of Alzheimer’s or other dementia, there are also typical age-related changes that can be misconstrued for dementia. Our 2020 Alzheimer’s Disease Facts and Figures report lays out some of the differences as well as how to move forward if you are concerned about behavioral changes that do not seem age-related.
It is important to understand which changes call for extra attention, and which are to be expected. Some causes of dementia-like symptoms include Lyme disease, sleep apnea, depression, side effects of medications, thyroid problems, delirium, vitamin deficiencies and excessive alcohol consumption. These problems may be reversed with treatment, unlike Alzheimer’s disease.
Typical age-related changes in memory/behavior:
Sometimes forgetting names or appointments, but remember them later.
Making occasional errors when balancing a checkbook.
Occasionally needing help to use the settings on a microwave or record a television show.
Getting confused about the day of the week but figuring it out later
Vision changes related to cataracts, glaucoma or age-related macular degeneration.
Sometimes having trouble finding the right word.
Misplacing things from time to time and retracing steps to find them.
Making a bad decision once in a while.
Sometimes feeling weary of work, family and social obligations.
Developing very specific ways of doing things and becoming irritable when a routine is disrupted.
These changes are common as a person ages and are not always cause for concern or extra attention. Some memory loss and changes in behavior are to be expected. There are some shifts in conduct, however, that may be more notable than the typical changes listed above. For an in-depth explanation of each sign of Alzheimer’s or other dementia, visit our full 2020 Facts and Figures report.
Signs of Alzheimer’s or other dementias include:
Memory loss that disrupts daily life.
Challenges in planning or solving problems.
Difficulty completing familiar tasks at home, at work or at leisure.
Confusion with time or place.
Trouble understanding visual images and spatial relationships.
New problems with words in speaking or writing.
Misplacing things and losing the ability to retrace steps.
Decreased or poor judgment.
Withdrawal from work or social activities.
Changes in mood and personality.
Understanding the difference is important, that’s why here at the Alzheimer’s Association we are committed to always bringing you the facts. If you have questions or concerns, our helpline is available 24/7 at 800-272-3900.
Shelter-in-place can be difficult to navigate for the 230,000 people living with Alzheimer’s in Illinois. Aside from the concerns of wandering, keeping occupied and entertained can also be a burden. Here are a variety of ideas to stay engaged and bonded with loved ones when staying indoors:
Play a game. Dominoes, checkers, cards or board games engage multiple senses at once. Some friendly competition can strengthen your relationship and be a good way to have fun between just two people.
Spend time in the kitchen. Cooking or baking a loved one’s favorite dish or trying a new recipe can be a fun adventure together. Ask your loved one if they have a cherished recipe or use the internet to experiment.
Test your knowledge. Try identifying all the states on a map or listing the presidents. Try to complete the list as a team, or turn it into a friendly competition with the prize of picking the next activity.
Get personal. Look at family photo albums and share stories or make a family tree poster board. Reminisce about past times together, it can bring up memories that you realize you haven’t yet shared.
Enjoy some self care. Brushing a loved one’s hair, a hand massage with lotion, or giving a manicure can generate a feeling of closeness. Discuss what types of personal care are relaxing to you and find the best way to enjoy it together.
Read together. Relax and unwind by reading aloud. Find a good novel, a classic favorite tale or an autobiography of someone you’ve always admired
Arts and crafts. Unleash your imagination by creating a piece of art. Model with playdough, color in a coloring book, or even draw freehand on a blank canvas.
No matter what activity you choose, indoor bonding can make even the coldest days feel a bit warmer. Use these tips as a reference next time the Illinois weather keeps you inside!
People living with Alzheimer’s or other dementia sometimes have problems sleeping, or behavioral issues that start at dusk and sometimes last through the night. This is known as sundowning, and there are steps you can take to minimize its effects. The changes in their sleep schedule can lead to more behavioral issues, so it’s important to minimize the difficulties as much as possible. Oftentimes sundowning peaks during the middle stages of Alzheimer’s, though it can surface at any stage.
There are some factors to look out for that can exacerbate sundowning:
Mental and physical exhaustion
Upset in the “internal body clock”, causing a biological mix up between day and night
Shadows due to reduced lighting can cause confusion about what people living with Alzheimer’s are seeing
Inability to separate dreams from reality can cause disorientation
Ways to help reduce effects of sundowning:
Keep a precise schedule. In order to maintain a restful night’s sleep, set times for every meal, bedtime, and waking up. Even working in a timed daily walk or exercise routine can help uphold the day’s structure.
Avoid stimulants. Nicotine, caffeine and alcohol can all affect one’s ability to sleep. Television can also be activating, so turn it off at least an hour before bed and avoid using television during periods of wakefulness during the night.
Be active during the day. Resting most of the day can cause restlessness at night. Discourage late afternoon napping and instead replace afternoons with activities. Puzzles, card games, cooking/baking, looking at family photo albums, reading out loud, or listening to music are all stimulating options to help fill the day.
Stay mindful of your own exhaustion. Sometimes loved ones living with Alzheimer’s can pick up on your stress and become agitated. Caregivers need to get enough rest at night as well to ensure they can stay energized during the day.
Keep the home lit in the evening. Shadows and the dark make for unfamiliar and sometimes disorienting settings. Keep the home well lit until it’s time to sleep.
Create a safe and comfortable sleeping environment. Make sure to keep the room at a comfortable temperature. Install the appropriate door and window locks to avoid wandering- door sensors and motion detectors can be used to alert family members if a person is awake and roaming.
Share your experience and connect. Join ALZConnected, our online support community and message boards. Here you can share your experiences, what did and didn’t work, and hear from others about coping mechanisms or just general support. Join ALZConnected For more information on caregiving and staying safe during COVID-19, visit here.
Mary Sanko is a volunteer support group facilitator for the Alzheimer’s Association Illinois Chapter. A support group is a regularly scheduled in-person or virtual gathering of people with Alzheimer’s disease or another dementia, family, friends or caregivers who interact around issues relating to dementia. Groups can have social, educational and/or support components and are facilitated by individuals who have received training from the Alzheimer’s Association. Find a support group near you here: Illinois Chapter Support Groups.
“In the early 1990’s, my mother lived in a small town in the state of Oregon and I was 2,000 miles away in Illinois. When she began to tell me her memory was failing, I dismissed it and tried to reassure her. However, it soon became obvious that she was right. She had a friend named Eileen, a retired Army nurse, who became her “guardian angel,” helping with her medications and errands. The responsibility became too great for her, and since there were safety concerns, my brother and I decided to move her to Portland near where he lived. She resisted the move, but we knew that we needed to “keep her close.” Becoming her caregiver and doing it with the dignity she deserved was very difficult. She passed away late in 1997.
I attended a local support group during the later stages of her disease and found it reassuring and helpful. Early in 1998, I was asked if I would consider becoming a support group facilitator. I still wonder why I was chosen. After all, I had a mathematics degree and had worked as a computer programmer. No social work education here! The local office staff trained me and I became a co-facilitator for the group I had attended a few months earlier. I found that helping others through their Alzheimer’s journey eased my grief.
It wasn’t long before my co-facilitator moved out of the area and I was on my own. Lurinda, whose mother also had Alzheimer’s and had been a member of the group, joined me in 2004. We have been a team ever since. We have a two-pronged approach to our meetings – education and support. The education segment is usually a DVD, but occasionally, we’ll have a guest speaker.
Twenty years later, I still find the support group meeting to be the most rewarding hours of my month. My mother, in her illness, gave me a wonderful gift, and I hope that through her, I have been able to help others. Facilitating a support group can be very challenging at times; but it is wonderful to see caregivers who come because they are desperate for help eventually begin to help others.
When I was growing up, my mother took sewing classes so she could help me with my 4-H projects. Sewing, and later quilting, became an important part of my life. In 2002, I made a small quilt that still hangs in the local office. It is dedicated to all caregivers with the inscription, “In honor of support group members who help and encourage each other through difficult times.” And it is also a tribute to my mother.”
I married the love of my life, Robert Andrew Jordan, on July 29, 1962. He was twenty and I was seventeen. Fifty-five years later our 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 June 30, 2017, the day which was the last day of work for my husband, Robert A. Jordan, M.D., the pediatrician, a graduate from 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, or 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 of 2014 that I finally came out of denial and came to terms with what was going on with my husband. I shared with our five children as well as Bob’smother and sisters my fear of what was later confirmed – he had dementia. I 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 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.” He 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, I 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 our 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 to 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.
I began to watch his behavior even more closely. His routine of getting up at 7 am, showering, getting dressed, making and drinking a cup of coffee, 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 am 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 fiance 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, 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.
July 3, 2017 was the first day of retirement for Dr. Jordan. On that day he got up early,got dressed in his suit and tie, put on his lab jacket, and began searching high and low for his stethoscope and car keys. On that day my duties as a caregiver began. Trying to get him to understand that he no longer had to go to work was a daily struggle. He was concerned with how we were going to survive, eat, and pay bills. This question went on all day practically every day. I eventually had to go write out our income sources and put it in his wallet so that he could visually see the numbers and understand for a short period of time that we were going to be alright. We had to move from our home which was now much to big for me to handle and seemed to be a trigger for his unhappiness. Not being able to drive the car that sat in the garage made him angry, not being able to go to the office to care for the children confused him. I was becoming frustrated, angry and confused. I hadn’t experienced or know anyone suffering from this disease and had no point of reference. I cried daily. My children insisted that I connect with a support group, so I started with the support group at South Suburban Hospital in Hazelcrest, IL, I then reached out to the Alzheimer’s Association of Illinois. After having attended an Alzheimer’s Association forum at Palos Hospital in Palos, Illinois where I shared my story I was asked if I would be interested in volunteering as a caregiver speaker for the Association and I gladly did so. I also- signed up to become a participant in the Emory University Tele-Savvy Caregiver Program which is a training program for caregivers. I needed to know all there was to know about being an informed caregiver, I knew how to be a wife but now I needed to know as a wife how to be a good caregiver for my husband. I’ve learned that I’m more than a caregiver, I am a clinician for my husband.
This journey has touched my heart so deeply that I now have a need and calling to be an advocate, not just for my husband, but for all who are affected by this disease. My husband as well as all who suffer deserve to be cared for with respect, dignity, honor and a deeper kind of love. Even though my plans were to care for him at home till death would separate us, my children and I had to make the dreaded decision in October of 2019 to place Dr. Robert A. Jordan in a long term care facility. He had begun to wander off, once having to be found by the police and brought back home. That was the most frightening day of my life. Then he was becoming aggressive toward me, my daughter and nephew; he was extremely agitated and depressed. In his new community he has become very calm and more social with the other residents. I find solace in sharing what I’m learning and experiencing every day.
One key I have learned is that self-care is most important. If I’m not healthy, I can’t see to it that my husband is cared for properly. During the time I was caring for my husband at home I was anxious, tired, short-fused, crying daily and suffering sleepless nights. I needed to share my feelings with someone who wouldn’t judge or criticize how I was feeling, so my children encouraged me to see a therapist. This was the best decision I could have made because she help me to work through my feelings of fear and frustrations by focusing on self-care. I gave myself permission to enjoy my life through spiritual disciplines, outings with friends, or enjoying free time with recreational activities. I have been blessed with an awesome support team, my daughters, my church family, my Nephew, my God Son together with his daughter and Dr Jordan’s colleagues who visit him often. My two children who live out of state come to surprise their Dad and I as often as they can, but with today’s technology we FaceTime them when we visit.
This support team allows me the flexibility to take trips to see my children and grandchildren who live out of state or to just do a getaway! I’m thankful for my support groups, the friends who have not abandoned us, my children who are the best, my colleagues, Bob’s colleagues, Bob’s agency caregiver, who still visits him, my church family and the support goes on and on. The vows we took 57 years ago have even more meaning to me now, “for better or worse, for richer or poorer, in sickness and in health we’ll be one till death parts us!”
As an unpaid caregiver, you commit time, energy and compassion to the ones you love who are living with Alzheimer’s. Chances are you’ve also had to cover some care costs out-of-pocket. Because you are a caregiver you might qualify for some tax benefits from the IRS. Though tax rules can be complicated and are subject to change, here are some expenses you might be able to write off. Talk to your tax advisor or accountant to learn more.
Medical expenses. Your loved one living with dementia may be considered your dependent for tax purposes. If this is the case you may be able to deduct their medical costs. Typically you can only deduct medical and dental expenses that are more than 10 percent of your adjusted gross income, but if you or your spouse were born before 1952 you maybe able to deduct medical expenses more than 7.5 percent of your adjusted gross income.
Note: Only expenses not reimbursed by insurance can be deducted.
Medical fees from doctors, laboratories, assisted living residences, home health care and hospitals
Cost of prescription drugs
Cost of transportation to receive medical care
Home modifications costs such as grab bars and handrails
Personal care items, such as disposable briefs and food
Dependent Care Credit. If you paid someone to care for the person with dementia so you could work or look for work, you may be able to claim the “Child and Dependent Care Credit” on your federal income tax return. If eligible, you would be allowed a credit of up to 35 percent of your qualifying expenses, depending upon your adjusted gross income.
You must have earned income
The person with dementia must be unable to physically or mentally care for him or herself
The person with dementia must be claimed as a dependent on your tax return
Flexible spending account. If the person with dementia is a dependent under the tax rules, you might be able to use your own workplace flexible spending account (FSA). This money can cover the person’s out-of-pocket medical costs or dependent care expenses in some cases.
For more information on deductible expenses and exemptions for caregivers, visit these links:
My Dad was a hard-working and career-driven man for the majority of his life. Even though he had a successful career, we would spend every weekend together when I was younger exploring the City of Chicago and trying different ethnic foods and exploring the many diverse neighborhoods. Every weekend was an adventure for us. One of our favorite things to do was eat Chinese take out, and go bowling every New Year’s Eve. I will always remember his patience and kind way of living, and the true joy and laughter he shared when we were just doing the simplest of things together. He was a wonderful father, and we loved each other very much. Through the best and the worst of times, we stuck together finding comfort, joy, and encouragement in each other’s love. I will also always remember his strength and perseverance, and how he held our family together through both trying and joyous times.
Before my father’s diagnosis, I had recently moved out on my own and was living with two girlfriends in the city. I was ready to start my life on my terms, I had just accepted a management position with my company and had also recently met the man who would later become my husband. I was thinking a lot about my professional goals, and personal life goals at the time and working really hard to build a life I could be proud of and call my own. My time and energy were devoted almost entirely to making this happen.
On Easter one year, after I had moved out on my own, I invited my parents over to my apartment to celebrate the holiday. My dad got lost on the way to a place he had driven all his life. I knew then that something was not right, but he was resistant to getting medical attention at that time. Later that same year, my parents needed to move. Before we could get my parents safely into their new apartment, my father drove off and was missing for several days. It was absolutely terrifying for everyone involved, but he was safely found and we were able to slowly start to get them into a better situation. This really marked the start of the hardest period of my life, and the most transformative.
There was a period of transition in our relationship that was very difficult, my dad was so resistant to seeing a doctor in the beginning, it was hard to understand what was actually going on with him. So many things were frustrating and terrifying. After he agreed to go to a neurologist, and I was able to go with him and become involved in his medical care, a lot changed for us because we knew what was actually happening. Our relationship returned in some ways to how it had been- filled with love, and yet it was very different in others because I understood what I needed to do to connect to him. I was able to put my frustrations aside and be there for him. I became in some ways what my father had always been for me, a protector and gentle guiding hand trying to keep him safe and let him know how much he was loved.
Becoming a caregiver was the biggest learning curve for me, as my father was a strong man who was used to doing things his way, and in the beginning, it was hard for him to accept that his diagnosis of Alzheimer’s was real. It was a crash course in caregiving, starting in major crisis mode, and eventually becoming more manageable as I found strength within myself and support through our community.
I think it was because of our special and life long bond that I was able to meet my father with love, even in the most challenging of times. Love motivated me to adjust my thinking and communication with him and to see him for who he always had been to me, and who he was inside. I never lost my loving father, even as his neurocognitive functioning and mobility declined. I saw very clearly who he was through his genuine smile and expression of emotion. I learned to listen and to see him on a deeper level, and I always found him there, truly.
I’m very grateful I found the Alzheimer’s Association when I did. After my dad’s diagnosis, I attended a care navigation meeting by myself, because my father refused to go. It was the first time someone was able to relate to me about my situation. I was 31 at the time, and my peers had no idea what I was going through or how to help. I was able to talk honestly about my situation with someone who understood what I was going through. They offered ideas, resources, and support for caregivers. It opened my eyes to the fact that there are resources available, you have to be willing to look for them, but they are out there. It also reminded me that I needed to take care of myself in order to be able to take care of my dad.
Three months before my father’s death, we moved him into an assisted living facility. He was entering the later stages of the disease at this point. However, his death was actually very unexpected, leaving our whole family shocked. One week before he passed away, I was able to visit and spend some time with him. We talked a lot about the past and the future. He knew I was applying to graduate school and he encouraged me. We told each other how much we loved one another, we didn’t know it would be the last time. I am so grateful that we had that chance, and what a comfort it has been to know that he knew how much he was loved. I have no regrets, because I really did try to do the best I could, and I know my father knew that. In some ways, we feel his passing was a blessing and that he did not have to go farther into the cruel grips of the disease. I think we find peace in that.
Alzheimer’s is a cruel and unforgiving disease that steals from those living with it. I have anger, I have hurt, it took from me someone who meant the world to me, and I miss my father every day.
I wanted to share my story because I think it could help someone else. Meeting someone who understood what I was going through meant more than I can express. As my life goes on, I hope that I can be that person for someone else, maybe many others. I hope to stay involved with the Alzheimer’s Association, and maybe even work with them one day using my skills as an art therapist and licensed counselor. As my father always said, “Life is not a sprint, it’s a marathon”. And I keep him with me as I run it.
What is the first thing you think of when you hear Alzheimer’s disease? Is it the scene from The Notebook where Allie suddenly remembers Noah is her husband, but minutes later is startled and confused when he calls her darling? Is it your beloved Grandmother forgetting your name at the last family party? Is it a family member, who has completely lost sense of who they are?
While some of these are accurate depictions of the disease, many people fail to understand what Alzheimer’s actually is. For diagnosed individuals, it is so much more than a little memory loss. It is a fatal type of dementia, and the most common type, that robs families of their loved ones. Symptoms of the disease get worse over time, becoming severe enough to interfere with thinking, eating, taking care of oneself and eventually living. If you have watched a loved one grapple with the severe outcomes of Alzheimer’s disease, you know the emotional pain and grief it can inflict on families.
The bleak reality is unless a cure is found, it is going to have a disastrous impact on all of us in some way. Currently, Alzheimer’s disease is the 6th leading cause of death in the United States. Nearly one in every three seniors who die each year has Alzheimer’s or another related dementia. Without any way to prevent, cure or even slow down the progression, the number of people in the United States living with Alzheimer’s disease, could nearly triple from 5.5 million in 2017 to 16 million by 2050. These are not just statistics, these are people; our parents, siblings, friends, neighbors, and co-workers, who eventually lose their lives to this undignified disease.
Alzheimer’s disease not only takes a hold of the person diagnosed, but it also takes a massive toll on the families, caregivers, and friends of those with dementia, who are at the center of this devastating crisis. In Illinois alone, there are 588,000 people providing over 670 million hours of unpaid care to someone with Alzheimer’s disease. The cost of this care is valued at more than $8 billion. Dementia caregivers tend to provide more extensive care for longer durations than those who serve older adults in other conditions. The effects of being a family caregiver, are generally negative, with high rates of social isolation, psychological difficulty, and financial hardships – leaving caregivers vulnerable to further emotional and physical grief.
Having a place for all those affected by Alzheimer’s disease to turn for information, care and support can drastically improve the quality of life for all involved. At the Alzheimer’s Association, we are constantly working to end Alzheimer’s disease, so families no longer have to bare the burden of losing a loved one. Until that day comes, we strive to provide support and resources to those affected to make their journey a little easier.
As we move further into 2018, we encourage communities across Illinois to help eliminate this devastating disease. It’s a disease that could affect you, but if we rally together, we can achieve a world without Alzheimer’s in the future.
To learn more about Alzheimer’s disease, or to get involved with the Alzheimer’s Association Illinois Chapter, visit alz.org/illinois, call 309-681-1100 or visit the Peoria office at 614 W. Glen Avenue.