See Part 1 in the series Knowledge is Power.
When I first heard that Dad was taking medication for Alzheimer’s, I was stunned. I knew that there was a lot that I didn’t know and likely some of which I knew was inaccurate. What I did know was that Dad would always be my dad, and he was not a disease. I also instantly knew that I would not, as close as possible, allow him to suffer, and that I would do everything I could to keep his life to the way he would have lived it without Alzheimer’s. In order to do that, I needed to get passed the stigma and understand the truth about the disease: what was fact and what was myth.
1. Alzheimer’s can’t truly be diagnosed.
The only definitive way to diagnose the disease is through an autopsy. Therefore, Alzheimer’s is “diagnosed” by:
a.) Eliminating all other possibilities through medical testing such as MRIs and CTscans
b.) Testing cognitive ability (which as the disease progresses I highly discourage!) and
c.) Observance of symptoms both physical and mental.
· Mental symptoms include confusion; loss of their sense of time and space — literally getting lost; agitation; repetition of thoughts, questions and stories; loss of ability to remember how to process sequences (e.g. using the remote); vacant looks; and withdrawal.
· Physical symptoms initially include balance, tremors (Parkinson’s like), and later sundowning (come sundown, they become agitated and can’t settle down until morning).
2. No one knows what causes it, pure and simple.
There are theories: genetics, which is always a terrifying and touchy subject; toxins, any number of them entering our bodies any number of ways; the bacteria of gum disease; and most recently Type III diabetes.n
3. No one knows how to prevent it.
While there are several theories, I work to prevent it by doing what I believe to be healthy for my body and mind: diet, exercise and creating new neural pathways.
Diet does not mean restriction or elimination. It literally means “way of life.” I subscribe to what I call the pioneer diet: fresh fruits, vegetables and proteins, with flour and sugar as though they are in limited supply and/or a treat. And I drink fluids, lots of clear pure fluids.
Exercise has multiple benefits. Cardio exercise keeps the system working at peak performance. Balance and strength work battle the physical symptoms of Alzheimer’s.
Possibly most important is the creation of new neural pathways by doing “new to me” activities. The value of the new neural pathways is in creating a greater cognitive reserve and a more complex network of neuronal synapses. The more pathways, the more accessible information becomes.
A study published in the New England Journal of Medicine followed elderly subjects over an impressive 21-year period to determine which activities most improved their sharpness of mind, and thus staved off the debilitating effects of Alzheimer’s disease. Interestingly the results found that learning a new activity created new neural pathways until the skill is learned, at which time it continued to be mentally stimulating but did not continue to create new neural pathways. The activities that continued to require rapid fire, instantaneous, mindful, conscious choices continued to be beneficial. The #1 ranked activity, with a 76% lower risk of having dementia, was … dance. And yes, I dance.
On the flip side of “new to me” activities are those things that make you feel alive, those you repeat until they become second nature, cellular. Can you tell me the name of your favorite song? Can you speak the lyrics? If I were to play the song, could you sing the lyrics? That’s cellular memory.
My dad is in the University of Denver Hall of Fame for both basketball and tennis. Within a year prior to his passing, a caregiver arrived at his home with an orange rubber ball. She tossed it to my Dad, and in his delight he began to handle his perceived basketball, skillfully threading it around his back and through his legs as though he was on the basketball court. It had likely been decades since he had played the game, but the cellular memory caused by years of repetition remained. That cellular memory can be invaluable for someone with Alzheimer’s, triggering the joy of the memory, and in this case initiating physical activity.
And finally, for me, I am also working on being a better, kinder person. There is a thought that Alzheimer’s amplifies a person’s basic being. If that is the case, I want to be kinder, not angrier. Alanna Shaikh, in her Ted talk on Alzheimer’s, in regard to her dad said: “When you take away everything he ever learned in this world, his naked heart still shines. ‘I need a heart so pure that if it’s stripped bare by dementia it will survive.’”
4. What I DO know … is how to help someone live with Alzheimer’s.
For a variety of reasons, there are several myths about Alzheimer’s that feed the stigma that surrounds the disease. These myths are caused by ignorance and fear. Some of the myths are based on out-of-date information, before the importance of diet, supplementation, exercise, and brain stimulation were understood. Others have developed because we live in a time when few truly understand Alzheimer’s and more importantly even fewer want to talk about it.
1. Alzheimer’s is always a death sentence
False. Alzheimer’s is viewed as a life-limiting disease. It is an accelerated aging of the brain. If no other preexisting condition, such as heart disease or diabetes, ultimately causes death, the symptoms of Alzheimer’s may result in death at some point. Those diagnosed with Alzheimer’s usually live 10–15 years, most of which are often lived independently. The truth is, that for many, the symptoms of Alzheimer’s are not the cause of death. For others, the aging of the brain caused by Alzheimer’s will be the cause of death in the same way that the natural aging of the brain and other organs causes death.
2. It is said that Alzheimer’s is not treatable or curable.
It is TRUE that at this point, Alzheimer’s is not curable. It is, however, FALSE that is it not treatable as defined: to make a condition better or to relieve it. An example is when one has an ACL tear. Although it will never be the same as it was before the injury, and is therefore not curable, it will heal and is treatable. Because Alzheimer’s is treatable, it is critical to have a “treatment approach,” one that includes pharmacological and non-pharmacological elements.
3. A person living with Alzheimer’s has no memory.
False. It is helpful to have a conceptual understanding of how our memories are stored. In Contented Dementia, author Oliver James writes about the person-centered approach to Alzheimer’s care developed by Penelope Garner, called SPECAL (Specialized Early Care for Alzheimer’s). To help others better understand Alzheimer’s, Garner uses the analogy of a photo album to describe the manner in which we store our memories. She says that normally each page stores a memory, and on that page are factual data, including images, about the memory and a record of the emotions attached to the memory. The memories that were created prior to the onset of Alzheimer’s are intact, like a page of the photo album just described. These memories are very helpful in anchoring the person to our reality. Additionally, if positive emotions are attached to the memory, it helps create a sense of well-being.
As Alzheimer’s progresses, memories are stored with less of the factual data, but always all of the emotional response. This results in a photo album page being literally blank as far as some or most of the factual data. But if the page is accessed, the emotions are still there. The person does not have the actual memory but remembers the emotional response to it. So if someone is unkind to a person with Alzheimer’s, they may not remember the details of the incident, but they remember the way it made them feel. Sometimes they remember a bad feeling without being able to remember why.
My dad was able to create some sort of new memories. We had 17 caregivers in 18 months, ending with a dream team of seven caregivers. He “knew” all of his caregivers, as being part of his safe extended family, although he did not know the names of all of them. He did begin to associate the name with the caregiver when we used it. Two of his caregivers were young identical twin males, who were difficult for even my family members to differentiate.
Dad could tell the two apart and associate their names with them. It is true that Dad could not learn new sequences, but he seemed to be able to create a type of memory of each caregiver based on the warm, loving feelings he received from them.
4. We are lost to those with Alzheimer’s and they to us.
This simply is NOT TRUE! Alzheimer’s diminishes the memory; it does not take away the relationships, the experience, or the emotions of those memories. And, more of their brain works than does not. In fact, billions of cells are still in the brain and working. In spite of the disease, most individuals are exceptionally perceptive, creative and highly emotionally aware. They are not lost, only unfamiliar with their new circumstances. They are the same individual as before the diagnosis and possibly more in need of our connection. As long as we focus on their assets, as opposed to their deficits, they will continue to remain connected to us. We are their anchors. The truth is that with continued deterioration there is an increase in their need for human connection, compassion, patience and love, because they have heightened susceptibility to isolation and sensitivity to disrespect.
5. As the illness progresses the individual ceases to be a person. (or becomes a child again)
FALSE! Does a person have to be articulate, intelligible, remember our name or be independent in caring for them self in order to be a person? Of course not. As a culture, we assist and support those with disabilities with resultant limitations far more significant than those caused by Alzheimer’s, but do not do the same for those with Alzheimer’s.
They do not become children again. Children are learning new tasks, while those with Alzheimer’s once knew the task but now have no memory of it and are unable to relearn it. We must treat the person with Alzheimer’s as an adult and allow them the same patience and understanding that we allow children first learning the task. While the person with Alzheimer’s is an adult, sometimes tactics that we use with children, such as distraction, are useful. It does not mean that we treat the person as a child.
Everyone has their unique capabilities. It is our job to identify and focus on those so that everyone living with Alzheimer’s, no matter where in the process of the disease they are, maintains their dignity, independence, and self-respect.
6. People with Alzheimer’s become mean and aggressive.
Absolutely FALSE! This is the most frustrating myth for me. Neither aggression nor nastiness is a symptom of Alzheimer’s. That does not mean that an individual with Alzheimer’s will not exhibit those behaviors, but that if they do, it is not a symptom of the disease. It may be due to an external condition or maybe they just never were a nice person and it has nothing to do with Alzheimer’s.
To understand this requires a thorough understanding of the primary symptoms and secondary side effects and behaviors of Alzheimer’s. While I won’t go into a full explanation, I can give you an example of what this means.
When someone has a knee injury (disease) and loses the function of their leg (primary symptom), they may choose to overuse it and cause it to hurt (secondary side effect) resulting in irritability (secondary behavior). Irritability is not a symptom of the knee injury, and we do not say that it is. The irritability is the result of a bad choice to overuse the knee, not the knee injury.
When someone with Alzheimer’s is nasty or irritable, Alzheimer’s and the person are often blamed for the behavior rather than potential causes. Understanding primary symptoms and secondary side effects and behaviors is critical in identifying what is happening in order to make the best treatment decisions possible.
I can honestly tell you that in the very few instances in which my dad was angry, my mom and sisters agreed with me that had we experienced what he had, we too would have been angry. Each time Dad was angry, he had been mistreated, disrespected or put in an unfamiliar situation or environment or had an adverse reaction to medication that caused fear.
Armed with an understanding of Alzheimer’s, it’s time to prepare and realize the possibilities. Read Part 3 in the series: Prepartion and Possibility.
Parts of this series contain excerpts from A Most Meaningful Life, my dad and Alzheimer’s … a guide to living with dementia.
For 2½ years, I provided full-time care of my parents, one with Alzheimer’s, delivering the care and end of life they desired. Since their passing in 2014 I have been on a mission to help others see that even with Alzheimer’s the possibilities are limitless and a meaningful life is possible, that death is due its dignity, and that everyone deserves compassionate and dignified care.