For many caregivers, hearing their loved ones yell for help is a common, upsetting, and frustrating experience.
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Becky sat, in a crowded room, screaming. "Help me!" she yelled, looking at different care aides. When they went to her seat, however, and asked what was wrong, Becky shrugged. "Just help me," she said.
Matthew walked down the hallway, repeating his daughter's name and asking for assistance. "Jennifer, Jennifer...help me. Help me, Jennifer." He did this all day, even when she was walking next to him.
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Sarah screamed whenever she was left alone for more than a minute. "Help!" she'd yell, her voice echoing off the walls and alarming whoever was closest. Other residents walking by yelled back. "Shut up!" another woman with dementia yelled into the room. "She never stops yelling for help," the woman rolled her eyes to the nearest care aide.
These stories are all true; all variations on experiences I've had working in memory care facilities and caring for people in their homes. For many caregivers, hearing their loved ones yell for help is a common, upsetting, and frustrating experience.
The thing that we have to ask ourselves is this:
why do people with dementia yell for help?
I begin this discussion with a disclaimer: I do not have dementia. I cannot answer this question with 100% certainty, but, if you ask someone with dementia why they are yelling for help, often they cannot answer you, either.
This leads me to a few thoughts:
1. One of the most common phrases that people with dementia will say is, "help." The words "help me" are a common phrase that we learn as children. When you say, "help me," you expect someone to come to your aid. People with dementia want someone to come to their aid, even if they cannot express WHAT help they actually need.
2. People with dementia often do not know that they have dementia. Many of them, however, know that something is wrong, or, at least, slightly off. No one wants to feel "off" all day, every day. People with dementia know that they need help--but with what?
3. A famous psycholgist named Martin Seligman began studying what he called "learned helplessness" in the late 1960s. Learned helplessness means that a person (or an animal, as the experiments were completed on) learns that they cannot do things for themselves when others take over for them. You sometimes see this in people with depression. People with depression feel useless, and so they begin accepting themselves as useless. They feel as though they need others to do tasks for them, and when people begin doing those tasks for them, the person with depression begins to lose the skills necessary to do those tasks. The same thing applies to dementia care. We often take tasks away from people with dementia, and so they learn that they cannot "do things" anymore, when that is not really the case.
4. Yelling "help" can also be a sign that someone with dementia has an unmet need. Perhaps they are hungry, they don't feel well, or their adult brief is wet or soiled. It is important to look for these potential causes.
5. There are other mental health issues going on, or perhaps there are too many (or not the right type of) medications in a person's system. It is important to rule out medication issues and other mental health issues, other than dementia.
6. The person with dementia may be under stimulated or too overstimulated. Maybe the room that they are in is very crowded, and the person with dementia cannot make sense of what is going on because everything is so overwhelming. Perhaps there is not enough going on, and he or she is bored.
Look through this list of options. Most likely, people with dementia who yell for "help" are responding to a number of these issues. There are steps that you can take to help combat the constant yelling, but they all start with trying to figure out what the real problem is.
How to Get Answers To Your Questions About Alzheimer's and Dementia
- Is it an unmet need?
- Is the person lonely?
- Are you making them feel helpless, and so they are acting helpless?
- Put your detective hat on, but keep in mind that, while it is an upsetting phrase for someone with dementia to say, it IS just a phrase.
"When Someone You Know is Living in a Dementia Care Community" - was published by Johns Hopkins University Press. She currently works as a dementia community designer and consultant.
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