10 Things Not to Say as a Caregiver for a Person Living with Dementia
A dementia caregiver guide for navigating through delicate situations
Providing care for someone who lives with any type of dementia — whether it’s Alzheimer’s, vascular, Lewy body or any of the myriad incarnations — can be intimidating. We watch helplessly as someone we love changes dramatically in how they view the world, and in the words and actions that they can understand. These changes can lead to situations where we unintentionally say and do things that make life harder for everyone involved.
This list is only a start, but avoiding or rewording these questions and statements may improve your caregiving partnership.
1. “Do you remember?”
It seems natural to ask your dad who is living with Alzheimer’s about events from his past. However, doing so directly can be a problem. Why? Because he may not remember the event, but the expectation that he should remember could make him anxious. Instead, when you want to engage him in conversation about the past, leave the topic open. You can say, “Dad, I’d love to hear about what your favorite thing to do was when you were growing up.” He can then take you along on any adventure that comes to mind.
2. Don’t argue.
If your wife says that she used to live in a house that you’ve never heard of or seen, you can say “Really? I’d forgotten that.” Being right doesn’t matter, and correcting or arguing will get you nowhere good. Go along for the ride. You might learn something interesting. If not, no harm done.
3. “You’re embarrassing me!”
A reminder for us all is that people living with dementia aren’t giving us a hard time – they are having a hard time. If you are at the store with your husband and he becomes anxious which causes him to become belligerent, soothe him by holding his arm in a comforting manner, use a calm voice and put the “blame” on yourself. Tell him that you forgot something and really need him to help you by going back home. Do not tell him that his behavior embarrasses you. He can’t help it.
4. “Why are you doing that?”
If your husband is pulling on the fringe around a couch cushion he isn’t being purposefully destructive. People living with Alzheimer’s often have a need for tactile feedback. Additionally, they may have a compulsion for their fingers to be doing something. Some people will pick at their skin and cause sores. Others will spend hours tearing up pieces of paper or tissues. Your husband won’t know why he is doing this, but you can help him by buying him a lap pad or “fiddle pad.” These products, now widely available, provide both tactile stimulation and keep fingers busy.
5. “What shirt do you want to wear?”
People living with dementia have a hard enough time navigating this confusing world without being asked open-ended questions. Preserve dignity by offering choices, which is a vital part of care, but simplify the choices by holding up two shirts and asking which she’d like to wear. He may mention the color of one shirt, but point at another, so go with the one he points to and say, “This one?” Then he’ll say yes or no, or else nod. You can say, “Great choice! Let’s put that on,” and then help him dress.
6. “That’s an orange, not an apple!”
It doesn’t matter, it doesn’t matter, it doesn’t matter. It’s up to you to remember that the person living with dementia may have a hard time with words. Don’t make your mom feel worse by criticizing her words. If you ask her if she’d like an orange and she says yes but digs for an apple, let it go. If she has what she wants, then everyone should be happy.
7. “You are home!”
No one approach will work every time, but what is consistent is that your loved one is looking for a feeling of safety and comfort when she asks this question. If you can distract her by asking her to snuggle on the couch under a blanket and watch a DVD, that may work. Or you may ask her if she misses home a lot. If she says yes, ask what she misses about it. Engage her in a conversation and, eventually, the anxiety that causes her to want to ‘go home’ should subside. There are many guides for dealing with this common issue, but Alzheimer’s expert Teepa Snow’s video is one of the best, found on My Alzheimer’s Story.
8. “You just ate!”
People living with dementia often don’t remember if they ate so they may want to eat again. Often, keeping snack foods around can help. Instead of scolding your dad for asking to eat again when he just ate, when he wants to eat again you can suggest some treat that he likes and then offer a small amount. That snack may be enough to satisfy without arguing about the fact that he just had supper.
9. “We need to hurry!”
Your dad has an appointment to see the doctor and you’ve waited a month for this, but he is stuck in a fearful mode and becomes angry and throws things rather than getting dressed. Obviously, he is stressed and trying to hurry him won’t help. Calm yourself down first and offer support by agreeing that this is a stressful situation. Take time to sit and comfort him. If you began preparing early, this may work. If not, you may have to cancel the appointment. Sometimes you have to just let it go and hope for a better day.
10. “Here, let me do that!”
Your husband who is living with dementia will become easily confused, and stress just makes the confusion worse. Trying to get a button in a buttonhole can be a massive frustration, yet he may not want help. Sometimes, you can distract him from the task at hand and later do it yourself, but when possible, have patience and let him finish. Note: When it comes to getting dressed, adaptive clothing can be helpful. An ingenious shirt with magnets instead of buttons can look dressy, yet be easy to put on. With some digging, you may find shortcuts for other tasks, as well. The idea is that your patience is gold. Allow room for slowness and mistakes. None of this is worth a blowup on your part. Your anger or anxiety only accelerates his anxiety and can ruin what could be an otherwise decent day.
When interacting with a person living with any type of dementia it's generally better to use statements rather than questions unless you are offering a simple, obvious choice. Say, “It’s cold so we need jackets,” rather than “Do you think you need a jacket?” As your loved one’s disease progresses, words will become increasingly hard to process and decisions can be impossible to make. Watch for this progression and adjust your speech so that you have a slower cadence. Use short sentences, but speak with a smile. Sometimes your body language can say it all.
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