9 Mistakes to Avoid When Caregiving for Someone Living With Alzheimer's
Most of us who have cared for someone living with dementia have tried our best to determine how best to provide that care. We research. We try putting ourselves in their place. We do our best to be patient because we understand that they can’t help their having the disease. Still, we are human and we make mistakes. While we shouldn’t wallow in guilt when we do make mistakes as a care partner, there are situations that we should try extra hard to avoid. Here are nine of them.
Insisting you are right because, well, you know better. You don’t have dementia. People living with dementia (PLWD) have an increasingly limited ability to understand the world as we see it. Therefore, we need to learn to see the world from their view. When we do this, we don’t argue if they say that they haven’t eaten all day even though lunch was an hour ago. We just say, “Really? Then we’d better get you a snack.”
Expecting everyone with dementia – or even everyone with dementia of the Alzheimer’s type – to be the same
Your uncle’s trajectory with the disease will be different than your dad’s or your friend’s husband. Everyone with dementia is as much an individual as everyone who doesn’t have dementia. Yes, there are guidelines and behaviors to watch for, but each person will respond differently. Remember, too, that each day will be different. Some days are easier than others. That’s the nature of the dementia caregiving.
Although it’s tempting to point your finger at the person with dementia, I have never seen shaming to achieve positive results. They can’t help their behavior. Shaming is rarely a good reaction toward anyone, but it’s especially egregious when the person cannot help their behavior. Redirect. Distract. Lovingly find out what’s wrong. Just don’t shame.
Treating people living with dementia like children
This type of behavior can be sneaky because our care partner needs us to speak more slowly. More simply. More carefully. That does not mean that we should talk down to them. Remember that their intelligence has not deteriorated. What has changed is their ability to understand the complexity of the world as others see it, as well as their ability to verbally express themselves.
Stripping people living with dementia of their dignity by doing everything for them
Honor what they can do rather than stress what they can’t do. Work with them. Allow as much autonomy as reasonable. There are times when dignity comes before safety. This is something to discuss early in the process. Try to find a balance between reasonable safety and preservation of choice and dignity.
Assuming that they are wrong when they tell you someone is stealing from them or physically or emotionally abusing them
It’s appalling, but abuse can happen in any care setting. Listen carefully and with respect. Then investigate to the best of your ability. Look for signs of physical abuse, emotional abuse, and financial abuse if the person’s complaints seem to warrant that.
Assuming that they are right when they tell you someone is stealing from them or abusing them
Caregivers can be routinely accused of taking things, such as hearing aids or clothing, because the person living with dementia can’t find what is needed. This is a human reaction, if a bit paranoid, even for those of us without dementia. However, paranoia can be a symptom of dementia. Listen to the story with respect and love. Try to find the missing object without making a fuss. With accusations of physical abuse, don’t jump to conclusions, but do listen and consider all options because, yes, abuse happens.
Reaching for drugs to settle difficult behaviors
Try first to understand the reason behind this behavior. What we need to do is go through a mental check list. Do they seem warm enough? Could they be thirsty? Could they be in pain? Try to find out why they are upset. Determining the underlying cause can often take care of what is viewed as problem behavior.
Categorically refusing drugs
People living with dementia can have pain just as you or I can have pain. If you hurt that badly you’d complain, too. You’d also, most likely, accept appropriate medication. There are people living with dementia who have mental illnesses that don’t go away once dementia sets in. While dosages of any medication must be very carefully controlled when someone has dementia, often a low dose of the proper medication for their pain or mental illness is not only appropriate, but humane.