Viewing Dementia Through Your Loved One's Eyes - Late/End Stage

Contributed by Sarah Viola

A loved one looking at dementia and its symptoms from the outside has a much different perspective on the disease than a person who is living with it. As a person progress through various types and stages of dementia, they begin to view the world differently than they once did. Understanding how people with dementia experience the world around them can help bring valuable insight to their caregivers and loves ones - and assist them in developing a better sense of patience, empathy, and understanding.

A view from the caregiver:

My loved one is so withdrawn. She rarely interacts with the world. She used to be so lively and full of energy, but now she just sits there and doesn’t even care if I come visit anymore. Does she need anything from me? Some days it feels pointless to come visit because my loved one no longer recognizes me, she just stares blankly at me when I speak to her.

She seems to enjoy some of the things I do for her. I hear from others about good things that happen, but I don’t often see them myself. It breaks my heart to see my loved one in such a vulnerable place. I hate dementia! Why did this have to happen? What’s left?

A view from the person with dementia:

I am still here! I think my loved ones believe I don’t want them around, but I do. Sometimes I get confused and can’t remember who they are exactly, but I love seeing their warm, comforting, happy, and familiar faces. Having them present brings me a sense of security, but I’m not able to show it very well. This is frustrating for me because I just want to interact and be present, but I’m not able to communicate that to them. I want to thank them for loving me, for visiting me, for understanding - but I just can’t get the words to make sense anymore.

My joints are getting stiffer now since I’m not able to move them like I used to, and I need a lot of help with everything including caring for myself. My world is so big and fast paced that it is all a big blur. I appreciate when caregivers and loved ones take the time to go slower so I can follow what is happening. Since my communication is limited, I like it when loved ones bring me into a conversation or activity in a way that allows me to use my senses. I enjoy the time they spend helping me move and stretch so I can be more comfortable. I especially appreciate it when they play music or sing to me, because music brings be back to times of old and fills me full of joy. Often my emotions begin to flow, whether laughing or crying, and I just love interactions that allow me to express them. It helps me to still feel I matter.

This is the last of a three-part series about dementia. As you can most likely tell from the series, your loved one with dementia views and experiences the world much differently than you do. The goal is to allow them to experience their world in the way that feels successful for them. Try to look at the world from their perspective and not your own. This is the key to fostering the joyful moments you may be missing. If you have further questions that need answers, Primrose would be honored to assist you. Just visit our website at for more info.