Chapter I: Understanding Alzheimer’s Disease
What follows is Chapter One of Meet Me Where I Am: An Alzheimer’s Care Guide, by Mary Ann Drummond, noted Alzheimer’s author and founder of Angel Tree Consulting.
Each chapter of Drummond’s book will be released in serialized installments. Chapter Two, Preparing for the Journey, will be released in September.
Understanding Alzheimer’s Disease
“If I had a single flower for every time I think about you, I could walk forever in my garden.”
–Alfred Lord Tennyson
I don’t know if it was the love in his eyes or the tear that rolled down his cheek as he shared his story that moved me the most. He was serving on a panel of family members at a symposium I attended, sharing their stories of what it was like to be a caregiver for someone with Alzheimer’s disease. His story was much like all the stories I had heard before with one unique difference. As he described the journey of watching the love of his life slowly lose her independence and sense of identity, he shared a pearl of wisdom he had discovered: “I learned to ask her each morning, “Who am I to you today?”
He found that sometimes he was her husband. Those were the good days for both of them. But other times, she would answer, “Aren’t you my brother?” or “I’m not sure, but I think I know you.”
The hardest days of all were when he had to play the role of a complete stranger. Once he learned that his job was to be the person she thought he was, her anxiety was decreased and they were able to better enjoy their time together.
Too often we try to bring the person with Alzheimer’s to our world rather than taking the time, effort and patience to join them in theirs. There are so many variables that inhibit the person with Alzheimer’s from recognizing current times and events as reality, and force them to relive the events of the past as if they are happening today. Because of this, a son that looks a lot like his uncle did many years ago may be mistaken for the brother that she remembers so well. The natural inclination for the son would be to try to convince his mother that she is quite mistaken and assure her that he is indeed her son and not her brother. The man I met who served on the panel learned through his own trial and error that this type of approach brought little success. Paralyzing emotions such as fear, frustration, anger, and disinterest can overwhelm the person with Alzheimer’s disease. Trying to force the individual to believe things that seem foreign to them only increases frustrations; both for the patient and the caregiver.
Through various experiences, I have come to appreciate the value of meeting each patient where they are in order to achieve successful outcomes. My first realization occurred over thirty years ago while working as a nurse on a busy medical/surgical unit. Our shift had reached the ‘aching feet–can’t wait to climb into my warm bed–point,’ and I had just sat down to complete my end of day charting when I noticed her. She looked frail, with silvery white hair and soft blue eyes that seemed to stare into nowhere. You could hear her softly whispering, a repeated call with yearning tones as she sat in her wheelchair by the nurse’s station, “Mommy…come to me, Mommy…”.
She had been a patient on our floor for several days and was well known to the staff due to unsettling behaviors such as yelling out from her room that people were trying to kill her, refusing medications, and frequently getting up without assistance to go “care for the baby” across the hall. Since she continued getting out of bed unassisted and was a high risk for falls, the doctor ordered for her to be restrained to protect her from injury. Her wrists were secured with a soft restraint to the arms of the wheelchair and she wore a vest restraint that tied to the back of the wheelchair to keep her from getting up.
My thoughts began to drift between the words I was writing and how sad it was to see a human being tied down, even if it was for their own protection. I watched her out of the corner of my eye as I tried to focus on my work. Eventually her constant whispering for “Mommy” got the best of me.
“Who has Ms. Smith tonight?” I asked.
“I do!” replied the charge nurse. “I brought her out so I could keep an eye on her. She wouldn’t stop climbing out of bed, plus she was keeping her roommate awake calling out for her Momma. If you ask me, she belongs on the psyche ward instead of here.” You could tell by the nurse’s tone that she was frustrated.
It just didn’t make sense to me that the soft eyed grandmother sitting across from us could have been that much trouble. Overcome by her sad presentation, I walked over and knelt down in front of her and loosened her wrist restraints. I took her hand in mine and asked her name. She smiled a beautiful smile, and sweetly said, “Why, you know who I am!”
Not wanting to offend her and not sure what else to say, I replied, “Sure I do…” She picked up my hand and kissed it affectionately, as though she had known me all her life and I was someone very dear to her. I stayed there quietly for just a moment as she clung to my hand before giving her a pat on the shoulder to tell her I had to go back to work. She became agitated, asking me not to go. I told her that I had to and got up to return to my charting, having to pry her hand away from mine as she did not want to let go. As I walked away, she started calling after me, “Mommy, please don’t go! I want a piece of candy, Mommy! Please Mommy, come back!”
I returned to my seat at the nurse’s station confused by what had occurred. Having a woman in her eighties call me “Mommy” was a strange experience. I wasn’t quite sure what to make of it. As I sat there trying to re-focus on the charts in front of me, her voice became louder and increasingly agitated as she continued to call out for “Mommy” and asking for candy. The charge nurse was annoyed by the patient’s increased volume and she was not shy in letting me know how she felt about it.
“Now look what you’ve done! She was just fine before you stirred her up. If you had left her alone she wouldn’t be so upset!”
She walked over to Ms. Smith, who was now in tears, still asking for her Mommy to bring her a piece of candy. Standing over the patient with her hand on her hip, she told Ms. Smith to stop calling for her Mommy since she herself was eighty-eight years old and her Mother was long since passed away. “And as for the candy,” her tone was cold and clinical, “you should know better than to ask for candy since you’re a diabetic. You’ll not be getting any candy around here. Now if you don’t be quiet and settle down I’m going to take you back and put you to bed…you’re too old to be acting like such a big baby.” The charge nurse walked away to complete final rounds, shaking her head and mumbling something about “those young nurses these days.”
My more experienced co-worker’s words struck hard with my newfound friend and I could see tiny tears begin to glisten in Ms. Smith’s soft blue eyes. When the charge nurse was out of site, Ms. Smith motioned for me to come to her, which I quickly did. This time she grabbed my arm, pulling me close while cupping her hand around my ear like a little child about to share a treasured secret. “I knew you would come back, Mommy,” she whispered. “I love you.” What could I do at that point but wipe the tears from her eyes and say, “I love you, too?”
I had been taught that reality orientation — the process of helping one to recognize the correct time, place and person — was the best intervention for anyone who experienced confusion or delusions. However, it just didn’t make sense to do something that would upset her further, especially something like telling her she was not a little girl and I was not her mother when she seemed so convinced all of this was true.
I knelt beside her once again and pulled a piece of peppermint from my pocket and gave it to her. She smiled as bright as the sun while she opened the candy and began crunching away at the peppermint. Knowing that somehow at that moment she felt she was with her mother, I told her that her Mommy loved her, and that everything would be OK. She pulled my hand against her cheek, closed her eyes and with a look of contentment, leaned her head back against the chair. Soon her grip softened and she fell fast asleep. By the time I returned to the desk to resume charting, the only sound coming from her direction was the steady rhythm of a gentle snore. When the charge nurse returned to the desk, she sat down and shook her head saying, “I’m glad she finally decided to go to sleep. Her hollering for Mommy was driving me crazy.” I smiled as I said, “Me, too.”
While I did not fully understand what happened that night, I knew it was something that nursing school failed to prepare me for. Curious to learn more about her medical condition, I pulled her chart and found her confusion was due to a diagnosis of Alzheimer’s disease. It was rare at that time to see the dementia diagnosed as Alzheimer’s. Usually the chart would say something like “organic brain syndrome” or “senile dementia.”
From then on, I began to pay close attention to the patients I cared for who had Alzheimer’s disease. Most were hospitalized with illnesses unrelated to Alzheimer’s, but because Alzheimer’s was present, the course of care was often complicated by confusion, combative behaviors, and paranoia. Many had to be either chemically restrained or tied down with physical restraints for safety and to prevent serious injuries to themselves. It grieved me to see them lying helplessly in their beds, watching my every move with sad, mistrusting eyes.
As time went on, I noticed there were certain consistencies that were absent in other types of dementias. Alzheimer’s patients were usually compliant and easy to work with until someone tried to convince them of something they did not believe or tried to make them do something they were not ready to do. Granted they could enter into some rather bizarre “realities” that required immediate interventions, such as trying to climb into bed with another patient they thought to be their spouse or trying to leave to “go home” even though they were very sick. Some seemed to revert to the times in life that occurred in their young adulthood and relived previous life experiences as if they were happening all over again, regardless of whatever else went on around them. Most could give accurate accounts of their oldest memories, yet often could not recognize their family and friends when they came to visit and had difficulty remembering events from recent days or years.
The more I observed, the more I learned, including to expect the unexpected when caring for Alzheimer’s patients and to celebrate the successes. I also learned the more I focused on what was familiar to them, the more successful my interactions were. If a patient thought I was her sister, I would sit by her side, and as her sister, explain why she needed to let the nurse change her dressing. If the patient wanted to go home, convinced their small children were alone and needed them, I would assure them their children were safe and being cared for rather than remind them they were grown with children of their own.
Encouraging them to talk about the things they remembered and held dear brought peace, so I would keep them focused on those thoughts as long as they would let me. This type of reminiscing would often end with the patient drifting off into a much needed and restful sleep.
Today’s healthcare workers are better equipped to manage the special needs of Alzheimer’s patients than we were thirty years ago. Restraints are only used as a last resort for safety after all other measures have failed. We have a better understanding of how to manage the natural fear and confusion a patient brings with them when they are being treated for other illnesses. As our knowledge and understanding of this disease has increased, the myths surrounding Alzheimer’s have decreased. It is not a mental illness. It is not contagious. It is not a condition of the mind that the individual can control; therefore, there should be no stigma associated with this disease process.
Part of our progress is due to an increased understanding of what Alzheimer’s is and how the disease affects the brain. Alzheimer’s is an incurable, progressive, degenerative disease that causes the brain tissue itself to decay and eventually cease to function. One of the earliest manifestations of Alzheimer’s is an increased loss of short term memory. As the disease progresses, learning skills, communication skills, and the ability to carry out normal activities of daily living are profoundly affected.
We also know that in addition to the destruction of brain tissue, there is a marked decrease in a neurotransmitter known as acetylcholine, which further complicates the brain’s ability to effectively manage functions such as memory and reasoning. To understand the function of acetylcholine, imagine that your brain is a large telecommunication network. Instead of cell phone towers, you have neurons. Instead of phones, you have neurotransmitters that carry the message. Without the neurotransmitter, the message is unable to enter the neuron effectively.
One of the first documented descriptions of what we now know to be Alzheimer’s disease occurred in 1906 by German psychiatrist Alois Alzheimer. Dr. Alzheimer had come upon a patient who had severe memory loss, paranoia, and other changes affecting her personality. When examining her brain tissue after she had passed away, Dr. Alzheimer observed abnormal shrinkage and deposits to be present. The disease wasn’t actually called “Alzheimer’s” until 1910 when another German psychiatrist, Emil Kraepelin, first used the pioneering researcher’s name to title the disease in a book he wrote.
Researchers continued to study Alzheimer’s disease, validating that brain tissue deteriorates as the disease progresses. For reasons yet unknown, plaques and tangles form in the brain causing neurons to decay and die. In the 1980s, a particular protein known as beta-amyloid was identified as a chief component of the “plaque” formations causing damage to nerve cells. A couple of years later a second protein, called Tau, was found to be a major component in the “tangles”.
In 1994, it became known that former President Ronald Reagan was diagnosed with Alzheimer’s disease. Having an internationally known figure fall victim to the disease increased awareness around the world, with a subsequent increase in much needed research funding. Many promising discoveries have occurred along the way, including a breakthrough in 1999 indicating a successful vaccination was used in mice. Unfortunately, there is a vast difference between the brain of a mouse and that of a human. A new research breakthrough brings increased hope by using genetically engineered rats rather than mice to replicate the type of brain changes that occur in Alzheimer’s disease. Since the brain of a rat more closely resembles that of a human, there is increased belief that future discoveries will produce more applicable results.
A noteworthy event impacting Alzheimer’s research was the passing of the National Alzheimer’s Project Act (NAPA) in 2011. The Act calls for the creation of a strategic plan to address Alzheimer’s with a goal of preventing the disease by 2025. Another breakthrough that is cause for celebration is the increased accuracy found in diagnosing the disease. The only way to diagnose Alzheimer’s with 100 percent certainty is to obtain tissue from the brain for laboratory testing, which is not possible to do on a living person. Thanks largely to modern imaging capabilities, as well as a better understanding of associated symptoms, physicians are better equipped to identify when Alzheimer’s disease is the cause of the dementia experienced.
According to recent statistics published by the Alzheimer’s Association, Alzheimer’s disease is now the sixth leading cause of death in the United States. Some 5.3 million Americans and more than 30 million people worldwide have Alzheimer’s. Another way to put these staggering statistics into perspective is to think about everyone you know over the age of 65, and to realize that one in eight of those individuals actually have the disease, though symptoms may not yet be apparent. There is a higher incidence of women diagnosed verses men, which is believed to be due to the fact women live longer than men rather than an indicator that women are at a higher risk.
While we have learned much, there are still so many questions unanswered. What causes Alzheimer’s? A multitude of studies with various hypotheses exist, but no one really knows why the brain of one remains healthy while the brain of another becomes ill. Am I at a higher risk of getting the disease if I have a relative who has Alzheimer’s? There is a genetic component to Alzheimer’s disease, so individuals who have a family history have a higher risk. Other factors also contribute to increased risk of disease; some of the most likely risk factors include a history of high blood pressure, high cholesterol, type two diabetes, a sedentary lifestyle or smoking. What can I do to decrease my odds? Staying socially, cognitively and physically active as we age may help reduce the risk of developing Alzheimer’s disease. It is important to keep blood pressure, cholesterol levels, and diabetes under control. Other studies have touted the benefit of increasing antioxidants and following a Mediterranean diet high in fruits, nuts, and low fat proteins. An interesting study further supporting the benefits of a Mediterranean diet lifestyle is the discovery that a component found in olive oil may minimize the presence of beta-amyloids in laboratory mice with Alzheimer’s type brain changes.
The most common risk factor for late onset Alzheimer’s disease (after age 65) is advancing age, although more and more individuals are being diagnosed before the age of 65. A small percentage (less than 5 percent) of cases are linked to rare genetic mutations. These individuals may be diagnosed as young as age 40.
Often the first symptom that leads someone to seek medical attention is a noticeable loss of their short term memory. With the increased awareness of disease prevalence we find ourselves grossly aware of absent minded moments, wondering if it is a sign of something larger going wrong in our brain. There is a question I love to ask when I’m presenting at caregiver symposiums: “Have you ever lost your car in the mall parking lot?” I take great comfort finding I am in good company with the vast majority who readily admit this has happened to them. In fact, I’m one who walks out of the store with my key fob in hand, clicking and waiting for my car to answer me with a familiar toot of its horn to say, “I’m over here!” Forgetting where we parked our car is not the type of short term memory loss that should concern us. Random incidents, such as looking everywhere for your glasses only to find they were on the top of your head, misplacing your keys, or drawing a blank when trying to remember you bank card pin number are normal events for the average person. It is when these types of events become everyday occurrences rather than occasional incidents that we should begin to worry. And when something really scary happens, such as driving to the grocery store and suddenly forgetting how to get back home, we know with certainty something is wrong.
In the early stages, it is not uncommon to find the Alzheimer’s patient joking about their forgetfulness and ascribing it to “getting old.” Individuals often compensate by taking notes and writing down the details of everything that goes on around them. When someone asks, “How was your day?” the response begins with pulling out the notepad and reading off the events that occurred. The individual compensates so well it may not be obvious yet to friends and family that something is wrong.
Eventually, unusual behaviors begin to surface, such as the wife who found her husband washing the car in the rain. When asked why, he was silent for a moment as he realized he had somehow made a mistake, then quickly recovered by saying, “Why…because it’s a great way to rinse!”
As the disease progresses, there will be a continued decrease in one’s short term memory abilities while the long term memory stays vividly accurate. While someone may have difficulty remembering if they have eaten a meal or how to find their way to their own room, it is amazing to hear them tell a story about their first grade teacher or talk in great detail about a life event many years ago. As Alzheimer’s patients reach the moderate to middle stages, the period of life that encompassed their late teens to early thirties becomes the most current memories. Because of this, they are most comfortable when presented with music, clothing styles, décor, photos and memorabilia that dates to the decades most familiar. Whatever the key drivers of day to day life were for the individual are often the reality and memories they will revert to.
You may see someone who was once a line man trying to climb on top of furniture to repair a fallen wire that only they can see. Someone who was once a factory worker may appear to be grasping at air with strange random movements when she is in her own mind, busily wrapping yarn around a spindle.
As the disease progresses, language and mobility become increasingly impaired. Eventually, the ability to carry on a conversation will be lost and the person will no longer be able to ambulate. In the end stages, the areas of the brain responsible for maintaining life functions such as digestion, swallowing and breathing will be affected. One of the first signs this stage has arrived is often a sudden and severe weight loss, even though the patient takes in food, as their body can no longer digest and process the nutrients it needs.
In order to make an accurate diagnosis, the physician will begin by collecting a detailed history of the patient’s symptoms. They will want to know when the symptoms first began, what other disease processes may be present that could create the same symptoms, and what the family history has been. Tests will be conducted that rule out other potential causes for the symptoms, such as metabolic imbalances, circulatory conditions that decrease the brain’s blood flow, neurological conditions, and other maladies that affect brain function.
Computerized tomography (CT scan), Positron emission tomography (PET scan) and magnetic resonance imaging (MRI) are utilized to identify changes in the brain that could indicate the presence of Alzheimer’s disease. In addition to the brain scans, it is common for the physician to order neuropsychological testing to assess memory and reasoning skills and identify what type of deficits are present.
A wealth of information is available on various websites defining criteria used to make a definitive diagnosis of Alzheimer’s disease. The National Institute of Neurological and Communicative Disorders and Stroke and the Alzheimer’s disease and Related Disorders Association (NINCDS-ADRDA) remains one of the most recognized sources for these criteria:
- Dementia established by examination and objective testing
- Deficits in two or more cognitive areas
- Progressive worsening of memory and other cognitive functions
- No disturbances in consciousness (no “blacking out”)
- Onset between ages 40 and 90
A complicating factor in making a correct diagnosis can be the presence of other types of cognitive disorders. While Alzheimer’s disease is the most common cause of dementia, a person may suffer from other dementia illnesses such as Lewy Body, vascular dementia, or Parkinson’s related dementia. If a mixed dementia and/or psychological medical history is present, it is important you learn all you can about each diagnosis to better understand what concerns are Alzheimer’s related verses a symptom of other illnesses. In such cases, it may be helpful to obtain a consult from a gerontologist or psychiatrist who specializes in geriatric medicine to assist with care management, particularly in the more physically active stages of the disease process.
Current treatment methods include medications geared toward delaying symptom progression while maximizing ability. Cholinesterase inhibitors such as Aricept, Razadyne, Exelon and Cognex are some of the more common types of medications used presently. They work by preserving the amount of acetylcholine in the brain, which is a neurotransmitter that is often low in Alzheimer’s patients and is required for effective brain function. Also used is a medication known as Namenda, which helps to control the levels of another essential neurotransmitter known as glutamate. While it is not as common as it once was, you may also find Vitamin E prescribed as well since it is believed to have a positive effect on brain function.
There are a few side effects associated with the medications used to treat Alzheimer’s disease, most of which disappear within the first few weeks of starting the medications. These side effects include nausea, headache, vomiting and diarrhea. On rare occasions the patient may develop an increased sensitivity and experience weight loss and abdominal pain. As always, should any unusual symptoms be observed after starting a new medication or after a dose change has been made on an existing medication, the patient’s physician should be notified and an appointment made to discuss the patient’s continued medication needs.
To date, medications used to treat Alzheimer’s disease do not reverse the effects of the disease. There is no visible improvement in the patient’s condition when taking the medication, which can cause one to think the medication is not working, especially when signs of disease progression are present. I have encountered well meaning caregivers who say, “I stopped giving him that medicine because it costs so much and I didn’t see him getting any better.” What caregivers need to know is that it’s what we don’t see that is the actual evidence of the effectiveness. Patients on these medications tend to stay at a certain level of function longer before progressing to more severe stages than those left untreated.
Hope comes in the form of ongoing research and continued efforts to identify treatments, cures and prevention. Until the cure is found, we must apply what we know to be effective, and remember to celebrate the successes, as there will be days when the rains fall.
Check back on January for Chapter Two: Preparing for the Journey.
Posted in Alzheimer's and Dementia Care, Perspectives on Alzheimer's, Resources on December 31, 2019