Picture 82-year-old John, who served in the Marines, graduated law school and had a career as a circuit court judge. He enjoyed swimming, listening to jazz and walking his dog – then he was diagnosed with Alzheimer’s three years ago.
Now, John takes frequent naps throughout the day and refuses his wife’s help to change his clothing or when bathing. Sometimes he even shows symptoms of verbal and physical agitation. Why do you think John is reacting this way?
I began by describing John’s story because you’re probably thinking due to his Alzheimer’s diagnosis, we should expect that he’ll have “challenging” or “aggressive” behaviors. This couldn’t be further from the truth. Instead, we should see John and the more than five million Americans with Alzheimer’s as people who are trying to communicate an unmet feeling or need.
What are behavioral expressions? Behavioral expressions are simply a person’s expression of an unmet need or desire. Its human nature, and we all exhibit behavioral expressions, especially when we face unforeseen and stressful situations. However, a person with memory loss may have fewer inhibitions, be less able to hold in their feelings and need to communicate them in verbal and nonverbal ways. In John’s case, he was feeling a lack of control over his care. After so many years of independently making his own decisions, he now must be reminded when it’s time to bathe. John may become angry when he receives any type of assistance with personal care needs because his caregiver is not involving him in making choices regarding the time or method. A variety of factors may also influence John’s feelings:
· Personhood (e.g., life history, values/morals, coping styles, culture)
· Physical environment
· Relationships, support
· Reaction to approaches or interactions
· Brain damage due to Alzheimer’s
· Embarrassment and vulnerable feelings
Behavioral expressions can include symptoms such as depression, apathy, disinhibition, delusions, irritability, agitation, anxiety, wandering and changes in sleep or appetite.
As a caregiver, it’s important that you don’t fear spending time with your loved one because you may be unsure of how to respond to what they may say or do. Here are ways to better understand behavioral expressions, including how to work through the distress you both may be feeling.
Discover what your loved one needs. When caregivers are trying to find out what their loved one needs, it’s easier to begin assessing the most basic ones first, before digging deeper. Think like a detective – first rule out obvious basic physiologic needs such as hunger, thirst, lack of sleep, pain and discomfort.
In John’s case, his wife should ask him when he prefers to bathe. It’s always a good to involve the person in making the decision and often good to offer at least two choices so that the person with memory loss can feel in control of that choice. His wife might say, “It’s time to get freshened up, would you prefer a shower or bath?” If he responds, “No,” she could try asking, “Would you like to bathe in an hour or would later this afternoon work better for you?” It might feel repetitive to ask multiple questions, but remember that you may have more success going through a process of elimination to help exclude other possibilities.
Fulfill your loved one’s needs. Now, determine what your loved one needs to feel safe, secure, and heard. In my work, I use Validation, a holistic way to communicate with those experiencing memory loss, which emphasizes empathy and listening. First, take a few centering breaths, which will enable you to be fully open and responsive to their needs. Then respond with empathy and compassion by reassuring your loved one that you understand what they’re feeling and what they need. In John’s case, his wife could use these approaches suggested by Today’s Geriatric Medicine:
· Use a calm voice.
· Involve him in making the decision with your support and offer choices– this allows John to feel in control while not adding confusion with too many options.
· Use open-ended questions. Try asking a question that begins with who, what, where, when or how. Avoid asking “why” because that can further frustrate individuals with memory loss. Appropriate questions would be, “When would you like to freshen up?” or “Where would you like to go after you bathe?”
· Create structured daily routines that are consistent and predictable and follow their former schedule, but be prepared to make adjustments and avoid power struggles. Keep John engaged with activities that match his interests and capabilities.
· Use cueing strategies, such as gesturing or showing examples as you give verbal directions, slowly and one step at a time.
· “Can I help you with that?” is a better question than saying, “You can’t do that!” Then substitute the activity for something that will also fit John’s needs.
· Take his hand and gesture, or privately request “Would you like to come with me?” when telling John he needs to go somewhere.
Once you can detect and anticipate the triggers for the behavioral expressions, you’ll be able to intervene more successfully. Most importantly, caregivers should feel assured that they can provide meaning and purpose to their loved one’s life, even if that person now communicates in a different way.
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