Dementia: 10 Things Patients Wish Their Caregivers Knew


People living with dementia are really the only ones who really understand what it’s like to live with this disease, whether Alzheimer’s or something else like frontotemporal (FTD) or Lewy body (LBD).

Sadly, the ability to communicate becomes compromised by dementia. That being said, care partners can search out the meaning behind their words or actions improve the care provided on an ongoing bases.

Here are some tips that can help you, from the perspective of someone suffering with Alzheimer’s or some other form of dementia associated with it.

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 may calm down.

My World Is Difficult To Understand, But Please Try

The world I live in is what is natural to me. I experience it every day, and even though it might be confusing to you, it is my whole life. If you can, pleas try to understand what the feelings are behind my words or actions, because they make sense within the context of my life.

People call this validation, and who doesn’t want a little bit of that? We’re really not so different, after all, I just can’t express myself as clearly as I used to. Please try to read into why I’m doing what I’m doing or saying what I’m saying – if you listen, watch, and bear with me, you’ll understand my needs a bit better. And it will be easier on you when you have to help me.

I Can Read Your Body Language and Tone Of Voice

I’m not always on the same page as the people around me. I may miss things, and sometimes the meaning of your words escapes me, but one thing I can read is your body language. I pick up on things – those imperceptible jerks and movements. How impatient the tone of your voice has gotten, and the little facial expressions that make you seem irritated with me.

It might seem needy, but I depend on all of the senses I still have to make sense of the world around me. You may think you’re saying all the right things, but your voice and the way you carry yourself say a lot more than you may think.

I Think You’re Stealing

Alright, I’ll admit it – this one can be incredibly frustrating for both of us. It starts when I can’t find something I know I put somewhere specific. I left it here, I can swear I did, but I don’t remember. All I know is that now I can’t find it, and my mind is telling me that must be because someone took it.

And you’re the only person who’s been here all day.

I keep accusing you of stealing, not because you’re a bad person, but because I don’t understand my failing memory. Things I thought I remembered aren’t where they “should be” – it’s the disease, not me, and I am so sorry for frustrating you so much.

Don’t Talk Too Fast, But Don’t Treat Me Like A Child Either

Speech is another big issue for people struggling like I am with getting older. When you talk too fast and the sentences you use are long or complicated, I don’t understand. Try to slow down your speech around me, and perhaps speak more simply. It won’t just be easier for me, but you’ll also have to explain yourself less, which is more comfortable for you.

Of course, you don’t have to overdo this, either. I know it’s asking a lot, but try not to talk to me like I’m a child. That’s worse than you talking too fast. Try to walk that line – slow down a little and keep your sentences simple. I can’t follow more than one thought in my mind at a time at a time, and this will help me a lot.

Your Tone Of Voice Upsets Me

Before you came in here, you were arguing with someone. Maybe it was a big fight. Maybe not so much. Whatever you were arguing about, though, it feels like you’re mad at me, now. And if you’re mad at me, I’m scared because I’ve only really got you.

I know you’ve always enjoyed our relationship, and I love spending time with you, but your tone of voice sounds angry. And my situation makes me feel needy. Please remember that I need to keep things relaxed when we talk, and even the little things can seem big to me. Angry or even impatient voices are upsetting, even when it’s not really about me.

I Hurt But I Can’t Tell Where Or Why, So I Act Out

When I seem testy or impatient, you may be forgetting that my arthritis never really went away. And it was pretty bad, even as recently as ten years ago. Now, though? Well, let’s just say I don’t always tell you when things hurt the most, but that doesn’t stop them from hurting.

Sometimes I’ll act out. I know it’s not right, and it’s a term I hate, but that’s the sad reality of the matter. Sometimes it all just gets to be too much, and I try to tell you. Please ignore my bad behavior and help me wade through this as best we can.

My Fingers Need To Do Something Because That Calms Me Down

When I take out a box of tissues and pull every single one of them before tearing them up, I’m not trying to be difficult. When I behave like this, I’m keeping myself busy. It’s a compulsion.

Sometimes, the best way through this will be just to give me something to keep my hands busy. It may seem like “a bit much”, but I’ll feel much more relaxed and my fidgeting won’t be so destructive.

I love you. Thank You For Being So Kind To Me.

Just because I am confused doesn’t mean I don’t understand you are moving heaven and earth to help keep me safe and comfortable. I know you are doing everything you can, and that being a caregiver to someone like me is difficult.

Even though my memory is fading, and I might sometimes confuse you for someone else (or forget who you are entirely), I still love you so very much. I don’t just depend on you – I am forever grateful to have you in my life. If I’m ever difficult, it’s because I can’t help it. The disease is at fault here, and I might not be able to express it, but you are my whole world and I love you.

Dementia: A Sad Fact Of Life You Have To Learn To Navigate

Taking care of your loved ones as they age can be difficult. Dementia only makes things more difficult. For more information on companionship and in-home caregivers, visit Granny Nannies today for professional CNA work.