When I first began working with people experiencing dementia, it was apparent their inner world was drastically different from ours. They were on the inside looking out and everyone around them must seem “Out there”. Because I was outside, I wanted to know what “In there” for a person with dementia was like.

We usually don’t think much about the reality we live in or what our perception is. But if we take a minute wherever we are to just to look around and notice every detail and get in touch with what it looks, feels, smells, tastes, or sounds like, we might become aware of perception. Now imagine how a person with dementia perceives this same scenario.

You can’t really.

Your persona is your memory and our memory isn’t just a conscious remembering. It’s a soup of human evolutionary, genetic, and cellular memory mixed in with the subconscious programming created from experiences, not to mention thoughts also. So, memory is important when perceiving your environment. You have to know what the elements are and process your relationship with them.

We use our senses to perceive our environment. What happens when we touch the water but it feels like slime, sounds become painfully loud and just a continuous noise comes out of people’s mouths when they are talking. We no longer can smell things or taste the food, or what we are seeing isn’t real or its changing color and form as we look at it.

What if we lose depth perception and can’t tell how far away anything is? Everything looks right in front of us even though it’s across the room and we can’t see the steps on the stairs, it looks like lines on the floor. And when peripheral vision closes in, we see everything through a tunnel, and our world shrinks.

What happens when we no longer feel the connection to our bodies and can’t even describe where you might have pain? Where’s my foot, who is that in the mirror, where does this food go (what is food)? When we can’t locate our bodies in the space around us, we feel like we are floating. There is no connection to our feet on the floor.

Worst yet there’s a feeling of being in a bubble with an invisible barrio between you and those around you. You can’t get out, and no one gets in. So, you close your eyes and dementia takes you places. Maybe to the past where you relive it. Or like in a dream, you move from one scenario to another without knowing you’re dreaming. You might close your eyes and hear the people in the room, but they sound garbled or far away. Best to keep your eyes closed. Maybe you sleep.

These are just small glimpses into the inner world of dementia.

Everyone is an individual, and each person perceives differently, and every person with dementia experiences it individually. However, what I’ve mentioned are common symptoms, and yet there are so many more. So be compassionate.

They aren’t giving you a hard time; they are having one.


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