Do you know someone who has Alzheimer's? If you don't, it might only be a matter of time before you do. The Alzheimer's Association estimates that approximately 5.4 million Americans have Alzheimer's. Sooner or later, your path is likely to cross with someone battling dementia.
Over the years, I've had the privilege to work with hundreds of people with Alzheimer's or another dementia. I've observed many well-meaning people who just aren't sure how to respond, or they wonder what to do when someone is confused and forgetful. Though their intentions are good, the results might not be. Here are my top 10 pet peeves of what not to do to those with Alzheimer's disease.
- Don't ignore him.
Sometimes, we tend to look the other way when faced with something uncomfortable. If you're not sure how to interact with someone who has memory loss, the first rule is to actually interact with him. Don't ignore him. His memory might not work as well as yours, but he's another human being and deserves our attention and respect. Greet him and offer a handshake or a pat on the back.
- Don't talk to her like she’s a young child or a baby.
Imagine if someone came up to you and spoke to you in a sing-song voice, putting their face nice and close to yours. What would your reaction be? Would it be to shrivel back from that person and withdraw, or laugh at them, or simply not respond? A person with Alzheimer's is an adult, not a child. They will appreciate being treated as such.
- Don't use terms of endearment instead of names.
Terms of endearment should generally be reserved for close family members and friends. (I say "generally" because there are a few people in the world who can use terms of endearment genuinely and convey caring and respect by doing so.) If you're a health professional and you walk around calling others "sweetheart", "honey" and "dear", you're often missing an opportunity. Use the person's name. It's one of the more precious things to people, and for the person with Alzheimer's, it conveys that she's important enough to remember her specifically and by name.
- Don't assume she’s confused all of the time.
Even though someone has Alzheimer's or another dementia, they may still have frequent times of clarity. I recently was reminded of that when someone with early Alzheimer's informed me that a friend of hers had called and said she would be stopping by. I admit to doubting in my mind if she really had the information correct, but sure enough, her friend stopped by. Don't discount everything that's said by the person with dementia.
- Don't quiz him.
"Remember me? What's my name? Come on, you know it. When's the last time I was here? Just think a little harder. What'd you eat for lunch? How old are you, Dad? What day is it?" Please don't do this. It increases anxiety, and has no benefit.
- Don't ask other people questions about him while he is right there.
The opposite of quizzing someone is this scenario: "Hi Fred. So Sue, how's Fred been doing? How's his memory? Is he having any pain?"
Consider this a gentle reminder to be intentional about directly asking the person with Alzheimer's a few questions. If he is completely unable to answer, you can then check with his family member in a respectful way.
- Don't focus on what she isn’t able to do anymore.
Rather than emphasize her lost job, disorganization or poor memory, direct attention instead to her ability to complete the puzzle she's been working on, her nice hairdo, or how well she can walk. Grieving what's lost is understandable and important, but focusing on the skills of the person goes a long way in encouraging her and can change both of your perspectives.
- Don't assume he is choosing to be difficult when he forgets certain things or displays challenging behaviors.
This is a common reaction often used by someone who is very close to the person with Alzheimer's. Sometimes, subconsciously, it may be easier to believe that your loved one is intentionally doing things to bother or hurt you than to accept that he's unable to control his actions and that his ability to remember something really is poor. What results from this, though, are feelings of intense frustration, hurt and impatience, none of which help you or him. You will both benefit if you give him the benefit of the doubt and assume (usually correctly) that his choices are the result of his dementia.
- Don’t stop visiting just because you think she won’t remember.
Do you sometimes feel like it's not worth it to spend time visiting your loved one? Think again. Even if she isn't able to remember that you visited her, research shows that the feelings you create remain far longer than the duration of your visit. Those feelings can shape the rest of her day by influencing how she responds to others, how she feels, even how she eats. Be encouraged that your visit has more lasting power than you think. Remember that there are times when you will be enriched by your time together as well.
- Don’t forget how you would like to be treated.
If you're not sure how to treat someone with Alzheimer's disease or what to say, make this your default approach: "How would I like to be treated?" This approach serves well as a guide for how to treat others with the grace, love, and respect that they deserve, no matter what their deficits or abilities.