“Oh, they look so good.” “She seems fine.”
For a lot of caregivers, those words get under the skin. And they’re a big part of why I wish more people knew a few facts about dementia.
There are so many things I wish everybody knew about dementia. I could probably talk about this all day. If more people knew them, they would be more supportive and kind to caregivers, and it would help make this world truly a more dementia friendly place.
Here are my top five.
1. There Is No Cure for Dementia Yet
I know you might be hoping for a magic cure. We’re not quite there yet.
There are some really promising treatments out there. Some are helping with symptoms. Some are even helping with the underlying pathology of Alzheimer’s disease.
But right now, we do not have a cure for dementia. No matter what you hear, no matter what anybody says, there is nothing mainstream available to the public that you could take your loved one to that would reverse the dementia or take it away.
That does not mean nothing can help. There are a lot of things that can help and improve symptoms. But curing dementia, sadly, does not exist at this point.
I hope one day to come back and share more exciting news that says we do have a cure. Right now, we do not.
If you want to know where the research really stands, I walk through it in are we actually making progress in dementia research?
2. Dementia Is Not Just a Memory Problem
This is a big myth that not enough people understand. Dementia is not just a memory problem. In fact, dementia isn’t even a memory problem. You can have dementia and have a perfectly fine memory.
A lot of times we hear dementia and immediately think of someone whose memory isn’t good. Memory is typically really affected in Alzheimer’s disease, and since that’s the most common type of dementia, we often connect dementia with memory problems. But there are other types of dementia where memory is not the thing that’s most affected.
Memory is just one of six cognitive domains that can be affected. There’s also attention (which includes processing speed), social cognition, executive functioning, language, and perceptual-motor skills. Any of these can be affected and could qualify someone for a dementia diagnosis, even when their memory is totally fine.
Here’s why I think this is so important. It’s easy for people to see someone with dementia remember some things and decide that person is totally fine. In reality, they’re not. And their caregiver is likely just as busy, stressed, overwhelmed and confused trying to handle everything as a caregiver whose loved one’s dementia does involve memory loss.
So don’t be quick to dismiss someone just because their memory seems fine.
3. Dementia Behaviors Are Common, But Not Guaranteed
Suspicion. Agitation. Frustration. Sometimes hallucinations, where they see things that aren’t there, or delusions, where they believe things that aren’t real.
These behavioral symptoms are common. They are not guaranteed. Not everyone with dementia experiences them.
I wish the general public knew this, so they don’t have to be scared or concerned every time they interact with someone with dementia. But I also wish every family whose loved one has dementia knew it. It’s not a guarantee your loved one will develop these symptoms.
In fact, some people with dementia can be totally delightful through the entire course of their disease. Some people who were pleasant and delightful their whole lives stay pleasant and delightful. And some people who were a little rough around the edges their whole lives can become extremely delightful through dementia.
That doesn’t get talked about a lot. But it is entirely possible.
4. Looking Okay Doesn’t Mean They Are Okay
Just because someone with dementia looks okay does not mean they are okay.
Especially in the mild stages, and even into the early moderate stages, there may be nothing visible to the casual observer that suggests this person has dementia. No obvious impairment on the outside doesn’t mean they aren’t struggling on the inside. It doesn’t mean they don’t need support or help. And it doesn’t mean the caregiver is exaggerating or being dramatic when they describe what they’re going through, caring for someone who looks okay.
Even as dementia moves into the moderate to severe stages, when someone with dementia looks okay, it’s usually a sign that a family member has put a lot of time and effort into making that happen. Truly, the caregiver put in a lot of work.
That’s why “they look so good” or “they seem fine” is one of the most common triggers for caregivers. It’s easy to hear it as “I don’t really believe your loved one is as bad as you say.” And it’s the caregiver who did all the work to make them seem okay.
So even when it doesn’t look like anything is wrong with the person with dementia, their family still needs support and understanding.
If your own family is the one saying it, I go through why that happens and what you can do in when family doesn’t believe your loved one has dementia.
5. People With Dementia Still Feel, Even When They Can’t Say It
Lastly, and most importantly: just because a person with dementia might not be able to communicate their feelings doesn’t mean they aren’t feeling them.
People with dementia absolutely feel. They feel their feelings. They feel the environment. They can sense what’s going on around them, even if they can’t communicate it. They sense your approach. They sense your attitude, even if they never put it into words.
That’s why dignity in care is so important. Always treat people with dementia with respect, whether or not you think they’ll remember it tomorrow, and whether or not they’re able to tell you about their experience.
Why These Facts About Dementia Matter
As Careblazers, we understand these things. But to truly live in a more dementia friendly world, and a more caregiver friendly world, other people need to understand them too.
Understanding dementia helps us provide better care and support. And when we share what we know with other people, we’re not just helping each other. We’re helping create a more compassionate and informed community.
If you’re at the very beginning of caregiving and still trying to understand the types of dementia, the treatments and all the different providers involved, the Care Collective is a place to keep learning. Every week we work through what’s happening with our loved ones and how to respond, together with caregivers who understand. You can learn more here.
