Viewing Dementia from the Family Caregiver and Patient’s Viewpoints

By | December 19, 2018

Senior couple on sofa

Differing Perspectives on Dementia

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 progresses 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. The following will outline different viewpoints of dementia, one viewpoint of the caregiver looking in, and one viewpoint of the person with dementia looking out. These differing viewpoints will follow through three stages of dementia, early stage, middle stage, and finally late and end stage together.

A View from the Caregiver at Early Stage Dementia

My loved one has gotten so mean! She is just not herself. At times, she acts as I’ve always remembered her, but then there are also times where she comes across very rude, self-centered, and angry. Everything she is thinking just comes out, regardless of whether it may hurt or offend someone else. She is very demanding of my time and can’t seem to understand that I have so many other things to do each day in addition to caring for her. My loved one doesn’t enjoy what she used to and often says “no” to attending even things she previously loved and would have enjoyed. This creates what appears to be outbursts at those trying to care for her, and it’s embarrassing at times. It’s almost like she is taking out her anger on everyone around her, the people that love her the most. I don’t know what to do. She just doesn’t listen anymore.

A Viewpoint from the Person with Early Stage Dementia

I keep hearing the word “dementia” being thrown around whenever people are with me. I try to keep up, but all the conversations and planning that my family and friends are trying to do “for me” is just overwhelming me. I am having a hard time thinking lately and the world feels like it’s moving so fast that I can’t keep up. I run into so many problems throughout my day, but the tough part is that I’m not always sure what the problems are. I don’t understand why I am having so much trouble, but I know it’s there. I am trying hard to cover for it, though, to keep my loved ones from knowing that there is something wrong. I know that my family thinks I’m always angry and rude. In reality, I am just frustrated and overwhelmed with everything that is happening to me. I can’t process everything they are expecting of me, it’s too challenging. I say “no” often because it is the only way I can keep my loved ones from seeing my struggles. I don’t want them to see me in situations where I get frustrated and embarrass myself. What my family doesn’t understand is that I wish I wasn’t so short tempered. I wish I was comfortable attending events and activities like I used to. I feel extremely insecure because my world has become so big and fast paced.

Middle Stage Dementia Viewpoints

A View from the Caregiver at Middle Stage Dementia

My loved one has lost the ability to take care of himself. I heard this may happen with dementia, but the day I needed to help with simply getting him dressed was when the reality hit me. I feel like I must do everything for him, and it is really starting to weigh on me emotionally and mentally. When I try to do things for him that he can no longer do, he gets angry at me, which increases my frustration. Why won’t he let me help? My loved one is generally busy and active, yet at times he seems to withdraw and disengage from the world around him. I try to help by getting him involved in his previous hobbies, but he just can’t. He either quits doing the things I set up, or he simply walks away. It is so frustrating for me as a caregiver – he just can’t focus. As soon as I feel like he is content, like I can perhaps get a few moments to myself, he ends up getting into something he shouldn’t. I feel suffocated.

A Viewpoint from the Person with Middle Stage Dementia

I am feeling a little lost these days. Inside, I feel the need to stay busy with what I’ve always done, but sometimes I get lost and can’t remember what I’m doing. Because of this, I jump from project to project. When I get overwhelmed, I just sit and internalize – I go to my safe place where there are no expectations. Deep down I just want to be a productive member of society like I used to be. I want to feel included, but since people often think I am a nuisance and that I can’t do anything, they leave me out of fun activities and conversations. They often talk right through me as if I’m not even present. My family must think I am helpless. They try to do everything for me, which makes me very frustrated because I’m not a child. I can do things myself, but I sometimes get lost between each step in the process of completing a task. If my family would simply tell me what to do next, I could prove that I am still capable of doing things physically for myself. I just need to have my world simplified, with less steps so I can focus on one thing at a time. After I’ve completed something on my own I feel great, like I matter again!

Final Stage Dementia Viewpoints

A View from the Caregiver at Late and End Stage Dementia

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 Viewpoint from the Person with Late and End Stage 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 me 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 like I matter.

Understanding Your Loved One’s Dementia

As you can most likely tell from the viewpoints and stages above, 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.

At Primrose, we know that the effects of dementia can be emotionally and physically taxing on families. You don’t always have all the answers, and that’s okay. Remember to take time for yourself and your family, and know that if you need help, we would be honored to assist you. You can visit our website at www.primroseretirement.com for more information and resources.

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