Young Onset Dementia

View One Family's Experience with Young Onset Dementia {click here}

Facts about Young Onset Dementia

  • Young onset refers to the appearance of symptoms in people younger than 65. It is also sometimes called early onset. (In contrast, late onset, which is much more common, occurs after age 65.)
  • It is estimated that approximately half a million people under 65—even those in their 30’s and 40’s—have Alzheimer’s disease or some other form of dementia.
  • Warning signs of dementia might include trouble with new memories; difficulty finding words; confusion about time, place or people; and disinterest in important responsibilities. For a complete list of warning signs, visit www.alzfdn.org.
  • These warning signs in younger individuals could be symptoms of Alzheimer’s disease, but they also are often symptoms of frontal temporal dementia, inflammatory disease or Creutzfeldt-Jakob disease .
  • Young onset Alzheimer’s disease is more likely to have a genetic cause than when the illness occurs at a later age. However, new research suggests that the majority of cases of young onset Alzheimer’s disease do not reflect an obvious family history.

Early-Onset Dementia on 'Compassionate Allowance' List for Government Disability Benefits 

Strategies to Help a Loved One Cope with Young Onset Dementia

  • When the onset of dementia occurs in younger people, many different issues emerge that the individual and his or her family need to address. These concerns may include employment, retirement and financial issues, in addition to the impact on younger family members.
  • Talk to your loved one and other family members about who should be told about the diagnosis—family members, friends, teachers, counselors, friends’ parents. While discussing this may be difficult, especially at first, it will help others understand the person’s lapses in memory and uncharacteristic behavior.
  • Have your loved one consider his or her employment options—whether the person with dementia can continue as is, take early retirement, decrease hours, change responsibilities or make other adjustments in a current position, or switch to another job that might be more suitable.
  • Help your loved one stay active and engaged, especially if unemployment occurs. For example, the person with dementia should exercise several times a week; get involved in hobbies, puzzles, crosswords, volunteer work, etc.; socialize; eat a balanced diet; and limit alcohol consumption.
  • Help your loved one find support services specifically tailored to meet the needs of younger people with dementia and their family members. This might include support groups targeted to those affected by young onset (including the individual diagnosed, caregivers and children), and day programs that offer more “active” programming like basketball and aerobics. If such programs are not available in your community, consider asking a local organization to start one.
  • Collaborate with your loved one to document memories and family history through scrapbooks, collages, journals or home videos.

Personal Essays

Banana Pancakes

I have never believed in the saying, “Bad things happen to good people.” I believe ‘good’ people, individuals of strong character who are confident that they possess control over their own destiny, overcome struggles by taking each one as a learning experience. When one views an obstacle as an opportunity to grow, a bridge to a better person per se, rather than a roadblock in the continuation of their life, a crisis can have positive effects instead of being viewed as a catastrophe.

My strong belief in this philosophy is best reflected through the situation I am in now. My mother has recently been diagnosed with dementia and the early onset of Alzheimer’s disease. As her 18-year-old daughter, who is also a student, a worker, a volunteer, an aunty and a sister, I admit that some days I feel like a tattered sailboat navigating through the eye of a hurricane. Some mornings are harder to get out bed than others, and on those days I hit the snooze button on my alarm, granting myself another five minutes of precious tranquility before embarking on the day that lay ahead of me. On the other hand, I have developed a firm gratification for the man who one morning decided to allot 24 hours to a day, as I find comfort, as well as rejuvenated hope, in the promise of a pristine start that accompanies every tomorrow.

“The apple was taken off the table as the charity walked by. I saw Mr. Johnson there. He finally came out of that tunnel!” This is the current riddle I have been chanting for the past two days with my mum, a technique we have adopted that incorporates word association with memory in an effort to enhance her abilities to recall information. Such a task requires my mother to remember four words over the course of an extended period of time, a difficult chore that seems to be made easier when there is a riddle to recite throughout the day. There are rough days when my patience hits the wall and it becomes painfully impossible for my mum to remember what seems to be like a simple set of words. During these distressing tribulations, when the sun is no longer out and 10 p.m. rolls on by, when neither of us seems to be able to rattle off any kind of riddle, we laugh. I do not find humor in the fact that some mysterious, inconsiderate, treacherous monster is lurking in my mother’s brain. The simple fact is that if I do not lighten up and crack a smile when things are out of my control, the fear of losing my own mother will destroy the person I am before the disease takes her away from me. I am not sure whether I repeat the riddle of each day continuously to help my mum or rather to reaffirm the faith that I have in her; however, either way, with every repetition I utter, hope grows inside of me.

I live alone with my mother, and although my family visits at every opportunity given, not one other person experiences the things I do on a day-to-day basis. I suppose the fear of losing my mother was the initial motivation I had that encouraged me to work with her more patiently, play board games with her more often, watch corny movies, eat ice-cream religiously, and find grace in each day that we are granted together. Now that I have adapted to the situation I have been faced with, I relish in her company because I appreciate her, not out of fear or obligation. I have learned much about my mum during this overwhelming struggle and have been inspired by the strides that she has made. I am not naïve to believe that she will overcome Alzheimer’s, or that the disease will not progress over the next couple of years, but the effort that my mother puts forth every day is tremendously encouraging. This week my mother failed a driving test, a blow to her confidence and a hurtful reminder of the lack of cognitive skills she possesses. Regardless of her setback, when I came home from school that day, my mum was sitting at the kitchen table reading a driver’s manual. To me, this was the greatest demonstration of perseverance I have ever been fortunate enough to admire. This is just one example of the many treasures that have accompanied the numerous responsibilities over the past few months that I have taken on, such as cooking meals, tending to the dog, shoveling an abundance of snow and providing care for the woman who I regard to this day as the most influential, confident, intelligent, witty and independent role model I have been blessed with as my mother.

I remember holding my mum in my arms as she wept when the doctor diagnosed her with early onset Alzheimer’s disease. The frightened look in her eyes, accompanied by the shaking of her frail figure, was all I needed to understand what was expected of me. I guess the best way for me to describe and capture the emotions that washed over me in that cold, unforgiving and stark doctor’s office is to compare it to the first day of preschool. Every step my mother took away from me pushed a new tear down my cheek as I stood anxiously waiting by the window of my classroom, wondering if she would ever come back for me. In the same way, every bit of information that left the doctor’s lips was an inch of space that could potentially be wedged between me and my mother, a distance that I would never be able to tolerate, regardless of how small. I was enraged at the ability that this overwhelming and disturbing disease possesses to dissolve the close bond that has developed between me and my mother over the past 18 years of my existence. That day, I felt like an orphan. Over the next couple of weeks, I experienced a paradigm shift; my bitter anger transformed into a necessary acceptance while my despise of weekly laundry soon turned into an immense appreciation for to-do lists.

Through the eyes of family friends, and even some of my relatives, “tragedy” has struck my life and it is inevitable that I will be scarred by this calamitous experience. It bothers me when onlookers comment, “This must be so hard for you, at 18 and all, you’re supposed to be living a different life.” So what people are implying is that in 10 years it would have been easier, maybe even more convenient for me, to deal with the fact that Alzheimer’s has torn my mother’s life apart, right? Pardon my indecency, I appreciate the sympathy, but, I currently do not have the free time to barter with fate. Don’t get me wrong, if I could rid the disease out of my mother I would in a heartbeat; but until I find my magic wand, I am gradually learning the virtue of patience, and I am strengthening my faith along the way. Above all, this experience has proved the optimistic and beneficial impact of hope, as well as the strong power of love, something my mother never seems to forget.

I take each day as it comes, finding comic relief when I came across my mother’s pocketbook in the washing machine, and smile when I wake up to banana pancakes waiting on the table for me to indulge in before school.

This essay was written by a high school senior from Massachusetts for the 2011 AFA Teens for Alzheimer’s Awareness College Scholarship competition. She has chosen to remain anonymous in light of her mother’s condition.

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You’re Still You
Written by Courtney Henley

I saw a boy from my school approaching me. He looked smug, but also somewhat confused, and even slightly annoyed. “What the heck is wrong with your dad? He was just screaming at your mom outside…”

I wanted to yell at him. How could someone be so ignorant? How could someone be so oblivious? I had to restrain myself. Yes, it was true that my parents were outside. It was also true that my father was screaming at my mother, who was standing behind him, leading him back to the car. I thought about all of this, how it must appear to an outsider, and decided to forgive my classmate. After all, he was only 13, and so was I. I was the only one who knew the real story—my dad, growing more impatient by the minute, could not bear to wait any longer for my school’s spring concert to begin. He began to get angry, so my mom decided to take him outside to get some air. If there was one thing that I knew for sure, it was that my parents, although it may have appeared this way, were not in a fight. And nothing was wrong with my father. Not, at least, in the sense that this boy meant it.

Quickly, I composed myself and coughed out a few incoherent words that sounded like something along the lines of “It’s not his fault” and “Alzheimer’s.” Thankfully, my best friend was with me to pick up the pieces of my broken sentence and explain to our classmate that my father had Alzheimer’s disease.

“Alzheimer’s disease?” he responded, a confused look on his face. “Isn’t that an old peoples’ disease? Oh well, whatever.” With that, he walked away.

This was a response that I was used to. My father was diagnosed with young onset Alzheimer’s disease at the age of 36, when I was only nine years old. It proved to be very difficult to explain to other nine-year-olds what Alzheimer’s disease is, let alone to expect them to understand it in the same way I was forced to. Even I had trouble understanding what was really going on with my father. When he was first diagnosed, I was not sure what to expect. At first, nothing much had changed—my dad was still the same lighthearted, loving, genuine man that he had always been. The only difference was that now he was home all day, since he had just been let go from his job that he had for 13 years. However, reacting as any typical nine-year-old would, I was excited that my dad would be home, and I enjoyed this extra time with my father. Now, he was already there when my brother and I arrived from school. Now, he could spend all of his extra time with us, his children.

Although for the first two or three years after his diagnosis only subtle changes occurred, on the inside, my father’s brain was slowly being torn apart by the stealthy plaques and tangles that make up Alzheimer’s disease. He was beginning to forget things of increasing importance. One particular incident that no one in my family will soon forget took place while on a vacation to visit friends in Pennsylvania. I had decided to go to a local county fair with my old classmate and her mother, while my father and the rest of my family went to a baseball game with some other friends. The next day, my mother told me that in the middle of the baseball game, my father looked at her, confused, and asked, “Where’s Courtney?”

These incidents began to take place more frequently as my father approached his fourth year of diagnosis. But, as my family and I would soon learn, these forgetful spells were just the tip of the iceberg. At home, we all began noticing changes in my father’s mood. None of us, however, realized how extreme these anger issues would get. After my father punched a hole in our kitchen wall, my mother was forced to make the agonizing decision to admit my father into a psychiatric hospital. I went with my mother when she brought him there. While waiting to be admitted, my father began to get angry and attempted to storm out of the building. After trying to stop him from leaving, I called my mom for help. I was more saddened than scared. All I could do was stand there and watch him transform from a peace-loving man to an angry imposter of my father. Thankfully, after a grueling seven weeks of treatment, my father was finally able to be released. He returned home the day after my thirteenth birthday.

It was after this hospitalization that my family had to make the most drastic changes. My father was no longer able to speak, to feed himself or to go to the bathroom alone. We now had to help him complete these ordinary, basic tasks that most of us take for granted. My father’s overall health was growing increasingly fragile. On the morning of my last day of my high school’s orientation program, my father had to be rushed to the hospital because he was coughing up blood. He was diagnosed with an infected gall bladder and had to have emergency surgery that night. Many hospitalizations were to follow this one, some for more serious illnesses than others. My family and I were forced to watch our husband, our father, our son-in-law suffer with each hospitalization. We all stood by his side as he fought off blood clots in his lungs and legs, dehydration, a collapsed lung, seizures, unexplained fevers and various other illnesses. We were all there fighting with him.

If there is one thing that amazes me most about my father is that he has not once during his eight years with Alzheimer’s disease lost his sense of humor, even for a second. Although my father is no longer able to verbally communicate with us, one thing he still manages to do is laugh. It is clear that he still loves life; he could have given up countless times if he really wanted to. Despite the fact that he is slowly losing more and more of his memory and cognitive abilities, his personality has never truly faded. It is for this reason that we as a family have decided not to treat my father as a child, but instead as an adult. Although that may sound like the obvious thing to do, since my father is, in fact, an adult, many people that we have encountered have spoken to my father as if he were a baby who could not understand big words. Even though we do not know how much my father truly understands, I would rather overestimate his awareness than underestimate it.

Since day one of my father’s diagnosis, I have been determined to change the way that people view Alzheimer’s disease. It is no longer an “old person’s disease,” and the world needs to know that. In eighth grade, I wrote an extensive research paper on Alzheimer’s disease. For the past two years, I have organized a lemonade stand to raise money for Alzheimer’s disease research and have raised more than $500 to date. After deciding that a career in the medical field was not for me, I thought of another way to contribute to research. I plan on studying film in college and one day hope to direct a film depicting the true horrors of young onset Alzheimer’s disease. Although a somewhat unconventional way of contributing to research, my dream is that this film will touch peoples’ hearts and encourage them to stand up against Alzheimer’s disease just as they have stood up against AIDS and cancer. My goal is to make it so that people, especially teenagers, do not have to be as ignorant about this disease as my 13-year-old classmate was when that incident happened four years ago.

My father’s illness has impacted me in more ways than I could have possibly imagined. Because of the fact that I have cared for my father for eight years and have been with him through trying times, I have become a more compassionate, more understanding person. I enjoy helping people, especially those who have no one else to turn to. I am thankful for the fact that I have been forced to mature more quickly than I might have had my father not been sick because it has allowed me to lead a better life. I try not to waste energy by stressing over the little things in life because in the end the little things are not going to matter. I have come to realize that we should enjoy life while we can because no one can be completely sure how much time we truly have left. My dad has always been and will always be my greatest teacher, my best friend and my hero.

Courtney Henley of Westbury, NY is the second runner-up in the 2009 AFA Teens for Alzheimer’s Awareness College Scholarship, and wrote this essay for the competition.

 

 

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