Frank was a Denver native, attended North High School and received his undergraduate degree from the University of Denver where he met the love of his life to whom he was married for 69 years. In 2002, he was inducted into the D.U. Athletic Hall of Fame for both tennis and basketball. He was a very kind, brilliant and accomplished man, and he was my dad.
In the early 2000s, I was told that my dad had been diagnosed with Alzheimer’s. My mom had not wanted my sisters and me to know, because she did not want us to think that our dad was any less than he had been before his diagnosis. She did not tell her sister or her best friend of many decades for the same reason. It is heartbreaking that Mom feared telling us. Fear of what others will think is just one of the negative ramifications caused by the unfounded stigma around Alzheimer’s
The greatest detriment to a person living with Alzheimer’s, and those who love them, is the stigma and its resultant ramifications. The stigma is perpetuated by the use of insensitive and inaccurate language in talking about the disease, which usually stems from a lack of knowledge.
According to Dictionary.com, a stigma is defined as a mark of disgrace or infamy, a stain or reproach, as on one’s reputation. Why is there a stigma around Alzheimer’s? A century ago, an older adult started to have difficulty managing their life independently and went to live with their children. There was no formal label to their decline in brain function, their signs of forgetfulness. They were sometimes referred to as being senile, which only meant that they were declining with old age, and were loved and kept safe through the end of their life. Today this decline in brain function, if it meets specific criteria, may lead to an Alzheimer’s diagnosis. Cue the myths about the disease that are expressed in negative, insensitive language. A few of the myths: Alzheimer’s is a death sentence. It is not treatable. The person living with the disease has lost all memory. The myths that fuel the stigma are statements of unfounded consequences of living with Alzheimer’s that leave us with a negative perspective.
What can we do about changing the stigma? The answer is twofold. First, we need to educate ourselves so we can separate the facts from the myths about Alzheimer’s disease and what it’s like to live with it. Secondly, we need to recognize how we can use language to shift the dialogue about Alzheimer’s from one that is negative to one that is positive. There is much that can be less than positive about living with the disease, but that does not negate the fact that there is much to be positive about. One example is that someone living with Alzheimer’s continues to have tens of billions of active brain cells that are functioning properly. Those cells allow for continuing a life with possibilities.
According to scientific literature that I’ve read, the human brain reacts more strongly to negative stimuli, creating more electrical activity. This is true in every area of our lives. When we don’t have enough information our brain creates it, and it is negative. When we lived in the days of “fight or flight,” the creation of negative information in the absence of real information was essential to our ability to survive, to move out of “harm’s way.” Today we may have fewer circumstances when our adrenaline response equips us to escape a huge wild animal near our home, leaving more circumstances in which our brain can respond with negative stimuli. Additionally, our brain weights negative and positive information disproportionately, so to create balance in our brain, it requires five times the positive information.
Language, the choice of words, is powerful in determining whether information is processed as negative or positive. We know that words can help or hurt, but what causes the difference? Every word has a denotation, or literal meaning, of the word. But, each word also has a connotation, what the word suggests, an emotional association. That connotation may evoke a positive, neutral or negative emotion. The words slim, scrawny and svelte have the same denotation, yet very different connotations causing different emotional reactions.
Think about these two statements: Alzheimer’s robs you of your memory and leaves you incapable of doing anything. Someone living with Alzheimer’s continues to have tens of billions of active brain cells that are functioning properly. The first is negative and elicits fear, while the second is positive and evokes hope.
In the old days, senility was defined as a decline in mental abilities caused by aging. Today we refer to that group of symptoms as dementia, with neither being an actual disease. Dictionaries define the adjective demented as mad, insane, deranged and crazy. It describes undesirable behaviors as opposed to a person who is ill and also valued. The connotation is that a demented person doesn’t understand and therefore may not be able to communicate. That misconception may result in the person receiving less aggressive medical management. A person living with dementia is likely to be recognized as a person of value, warranting aggressive medical management. It is the power of words. A reference to a demented patient implies that the disease defines the identity of a person, and results in an assignment of the disease to the person. Using a label that turns people into a disease places a negative judgement on them.
The connotation of your words matters because they create an emotional response and memories. The thing that makes the biggest difference in whether that connotation is positive or negative is its source. The two base emotions are the opposites love and fear, from which all other emotions are derived. The difference can be that a caregiver for a person living with Alzheimer’s can feel love-based patience or fear-based frustration depending on how someone’s words made them feel.
Fear-causing language is based on assumptions and therefore it plays right into any stigma. It always generates negative emotions such as: grief, apathy, uncertainty, shame, abandonment, horror, anger, hate, anxiety, guilt, failure, sadness jealousy, inadequacy, bitterness, judgement, frustration, doubt, insecurity, worry and depression. These emotions result in constraints and a feeling of being stuck in a situation unable to move forward.
Love-causing language is not soft, nor passive agreement, it acknowledges the value of the person. Using love-causing language doesn’t mean you don’t feel negative emotions, but rather that you feel them and let them move through you instead of controlling you. When you try not to feel them, they control you. Those with Alzheimer’s are increasingly sensitive to emotions and it is especially important when caregiving to motivate someone living with Alzheimer’s by tapping into their positive feelings. Love-causing language always generates positive emotions such as: happiness, empathy, certainty, honor, belonging, wonder, acceptance, contentment, peace, joy, hope, trust, confidence, connection, openness, freedom, honesty, compassion, respect and understanding. These emotions allow us to keep goals, focus, get along better in relationships, be content and be happier.
I’ve learned that
people will forget what you said,
people will forget what you did,
but people will never forget
how you made them feel.
Consider the following three examples.
1) The statement “I have lost my loved one.” The word lost has a very negative connotation. To say that “My loved one no longer recognizes me, but I still recognize them” allows for what remains. The statements evoke different emotional responses, one negative and the other positive. The latter allows us to continue knowing that we still have a relationship, just different than what we had, as opposed to experiencing the grief of loss.
2) A conclusion similar to “the disease made him mean,” is negative and inaccurate. Meanness is not a symptom of Alzheimer’s. In contrast, “the disease has amplified his personality,” is less negative as a statement of fact if he was mean prior to the disease. It doesn’t change that something unpleasant happened to cause the statement, it changes our ability to react to it in a more positive way. Our reaction to meanness may be frustration or anger, but our response to a pre-existing personality type might be patience and compassion.
3) The sentence “Alzheimer’s is a problem,” implies that it is a persistent, life-altering inconvenience and elicits a feeling of defeat. The alternative “Alzheimer’s is a challenge.” indicates that it is an obstacle that can be overcome and result in a feeling of accomplishment. A problem may be met with fear, anxiety and dread, while a challenge can be met with hope and creativity.
Beyond the stigma, careless language used for humor can be insensitive and hurtful to both families of those living with Alzheimer’s, as well as those who have been diagnosed. The statements, said jokingly or carelessly, “I’ve lost my mind,” or “I’m having an Alzheimer’s moment,” can be insensitive and hurtful to those who have been touched by the disease. Alzheimer’s is a serious diagnosable illness, not a characteristic. The statements diminish the severity of the illness. Additionally, careless statements can result in a further misunderstanding of the disease and fueling of the stigma.
As we continue to strive for awareness about Alzheimer’s, the reality is that few really understand the disease, and even fewer want to talk about. But as we do, we must have an awareness of how we communicate. In the same way that Martin Luther King Jr. said, “Darkness cannot drive out darkness; only light can do that,” fear cannot drive out fear, only love can. A shift to speaking from love-causing language can drive out the fear and stigma around Alzheimer’s. A lack of awareness in our use of language, allowing it to be inaccurate or insensitive and fear causing, creates a negative connotation and can feed the stigma and result in insensitivity. Rather than reinforce the stigma of Alzheimer’s, take care in your choice of language. With awareness and a shift in our language to be accurate, sensitive, and love causing, we can lead by example and change the view of someone living with Alzheimer’s from one of living in the shadows of darkness and shame, to one of emerging with limitless possibilities for continuing a meaningful life.
September is World Alzheimer’s Month and Sept. 21st is World Alzheimer’s Day. Both were established to raise awareness about Alzheimer’s and to challenge the stigma that surrounds dementia. Let’s start.
Trish Laub’s expertise is derived from the full-time care of her parents, one with Alzheimer’s, for whom she delivered the care and end of life desired. Through her personal experience, Trish became an unlikely “expert” on the topics of Alzheimer’s, dignified care and end of life. Now, Trish offers readers the opportunity to thrive during the caregiving process. With their easily accessible information and guidance, Trish’s “Comfort in their Journey” book series enables caregivers to be quick studies, think and then act. Trish has lived what she is sharing. Visit her at https://www.comfortintheirjourney.com