What People living with Dementia Would Like Their Caregivers to Understand

People living with dementia are the only ones who really understand what it’s like to live with their form of the disease, whether it’s Alzheimer’s or another type such as frontotemporal (FTD) or Lewy body (LBD). Sadly, the ability to communicate becomes compromised by dementia. That being said, care partners can, if we take time to search out the meaning behind their words or actions, continue to improve the care provided. Here are some tips that can help you.

I can read your body language and tone of voice

I may not always understand the meaning of your words, but I know what you are saying. I can read your jerky body language, the impatient tone of your voice, and your irritated facial expressions. Although you may tell me nice things, your words are hard to believe when your body and voice indicate that you are annoyed, angry, or resentful.

I think you’re stealing

I can’t find something that I’m sure I placed in a certain spot. I may have moved it myself, but I don’t remember. All I know is that I can’t find what I want, so my mind tells me someone must have taken it. That someone is probably the person who is with me the most. I accuse you of stealing because I don’t understand why whatever I want is not where I think it will be. I need you to understand that this is the disease, not me, so please forgive me for causing you so much pain.

Don’t talk too fast but don’t treat me like a child

If you can slow down your speech and use simpler sentences, I’ll be better able to understand what you are telling me. I’m asking you to not overdo this, though, by talking to me like I’m a child. That’s worse than having you talk too fast. Just slow down a little bit and try to simplify sentence structure so that I don’t need to keep more than one thought in mind at a time. I still won’t understand all of your words but this will help me a lot.

Your tone of voice upsets me

You’ve been arguing with your sister about politics, so I think that you’re mad. If you’re mad, you might be mad at me and that scares me because I depend on you. I know that this back and forth is something that you’ve always enjoyed, and I used to jump right in, but now the tone of voice sounds angry and I become afraid. Please remember that if I’m sitting with you I need to keep things a bit more relaxed. Voices that sound angry or even impatient, whether or not they are, can upset me.

I hurt but can’t tell you where or why, so I act out

If I’m upset, or what they call aggressive, remember how bad my arthritis was even 10 years ago. Just because I can’t tell you where I hurt, or even why, doesn’t mean that my pain has stopped. Sometimes the only thing I can do is what they call “act out,” which is a term I hate, by the way. I’m trying to tell you in the only way that I can that I hurt. Please try to help by ignoring my bad behavior while you try to determine how to address my pain.

If you hurry me, it slows me down

I’m not being stubborn when I’m slow. I’m slow because it takes my mind time to figure out what I’m supposed to do and to process my environment. Even when you help me, confusion is constant. Please understand that if you say, “Dad, we need to hurry,” I will respond by feeling anxious. This anxiety can become so severe that I can hardly move. Please be patient. If it’s a bad day and we have a medical appointment, you might even have to cancel. I’m so sorry but, again, I can’t help it.

My fingers need to do something because that calms me down

I’m not trying to be difficult when I take the tissue box and pull out all the tissues. When I sit and tear up those tissues, I’m doing what I need to do. It’s something that I can’t help. Some people call this fidgeting, but I think that I’m trying to use my tools, or maybe I just need to get rid of energy. If they need to label this as a “behavior,” well, I don’t like that but I can live with it. However, if you can just give me something to keep my fingers busy I won’t be so destructive.

I’m frightened because nothing is familiar

I might even be in the same home where nothing has changed for decades because you are so wonderful that you keep things the same for me. Still, nothing seems familiar. Then, I might even ask you to take me home. I might seem upset for no reason and lash out at you when you try to help. I might cry. Please be patient. As with other difficult “behaviors,” which, again, is another term I really don’t like, I can’t help it. I’m trying. Really, I am. Please help me feel safe and then I can calm down.

You won’t understand my world but you can try

My world is my truth. If you try to understand the feelings behind my words and actions both of us will have an easier time. This is called validation. Why wouldn’t I want people to validate my feelings? Don’t you want that, too? I’m really not so different from you. It’s just that I can’t explain things clearly anymore. If you really listen to me and watch my own body language, you’ll be better able to help me. Helping me helps us both have a better day.

You are wonderful and I love you

Please understand that I know that you are trying your best. Taking care of someone like me is very hard. Even if I can’t remember your name or that you are my wife or brother or friend, I still love you to the end of the earth. I know that I’m so fortunate to have you and I appreciate what you have done and what you are doing now. I give you a hard time because I can’t help it. Again, it’s the disease, not me. You are my world and I love you even if the word I say is hate.

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Minding Our Elders: Caregivers Share Their Personal Stories. “I hold onto your book as a life preserver and am reading it slowly on purpose…I don’t want it to end.” …Craig William Dayton, Film Composer