Throughout the disease process of Alzheimer’s and other forms of dementia, your loved one will lose the ability to understand simple instructions, the ability to reason or undertake any logical process, and sometimes the ability to speak. My husband Albert lost his language skills very early in the process, and this left me feeling confused, adrift, and alone. How are we supposed to know or respond to what they need when they cannot tell us what they want?
I am always reluctant to compare people with dementia to children because it seems demeaning, but in this case, it may be instructive to do so. Think about how your child communicated before he or she could talk. They did it with behaviors, mood changes, and body language, and it did not take you long to figure out what they wanted.
Many individuals with dementia who cannot communicate conventionally will behave in a similar fashion, expressing themselves through actions, behaviors, and mood changes.
Some of the behaviors you may see are:
Reactionary or temperamental behavior associated with frustration.
Depression-like withdrawal or anxiety.
Isolation, lack of sociability, refusal to do things they usually enjoy.
Swearing or abusive language.
Irrational anger; yelling.
Aggressive behavior; threatening or striking out.
Suspicion, paranoia, confusion.
Changes in hygiene.
Many people think that dementia behaviors are random and unpredictable. Usually, this is not the case. More often than not, they are trying to tell us what they need, or they are responding to something we have done.
Some of these behaviors or changes in mood emerge when we try to correct or argue with them, ask too many questions, or cause over-stimulation by taking them to loud places or where there are too many people. Or they may be tired, hot or cold, hungry, or need to use the bathroom. Changes in medication, lack of sleep, or infections will change behavior.
When confronted with a troublesome behavior, we need to back up and think about what happened prior to a change in behavior. We need to understand that they may be trying to tell us something, and we need to be flexible, adapt, and listen. This is not easy to do, and it is what sometimes causes families to decide to seek professional assistance.
For me, once I admitted that I needed a professional daycare for my husband Albert, it became a little easier. I had some time to myself, and I learned from them how to better maintain a routine so that when we were together in the evenings, everything was more predictable for both of us.
It is essential to understand that a person living with dementia is losing many senses and abilities, but they do not lose their feelings. Making them feel safe in a quiet, predictable environment will build trust and reduce their need to express confusion and frustration.
In our case, when we arrived home in the evening, I gave him a snack or some ice cream, and we sat on the couch so he could hold my hand and watch a bit of one of his favorite movies (there were only three of them). In a short time, he would be ready for bed. We watched no news and no loud or violent movies. As much as I did not want to watch the same movie over and over again or sit when I still had chores to do, this routine completely eliminated disruptive or confusing behaviors. He had told me what he could handle, and I had listened.
A person who is living with dementia is not trying to give you a hard time. They are having a hard time. As caregivers, we must be compassionate and focus on the person rather than the “dementia behavior.” Try to read the signs and understand that behaviors may be the way they tell you what they need. They are doing the best they can.You have the ability to change the environment if you just “listen.”
Debbie Selsavage is a certified trainer in the Positive Approach to Care, a Certified Dementia Practitioner, and President of the Alzheimer’s Family Organization. Her company, Coping with Dementia LLC, is dedicated to making life better for individuals and their caregivers who are living with dementia.
Until next time remember: “We all deserve the best”
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