A Family Member’s Perspective on Dementia Care
As most of you know, I have been working in the field of dementia for almost 30 years. During that time, I have provided a lot of advice to more families than I can count.
I also have a family member who is living with dementia.
Recently, he was hospitalized and subsequently transferred to a rehab center because of a nasty case of pneumonia. I have spent the last few weeks interacting with the medical system from the “other side.”
I would like to share some of our story with you. In doing so, I hope to accomplish a few things:
It is my hope that the healthcare professionals reading this will identify some areas in which they can improve.
I would like family members to feel more empowered to speak up and ask questions.
I want people living with dementia to be treated better. Is that really so difficult?
I won’t go into every single detail. In fact, overall, my family member received very good medical care. But in some little details, they really fell short.
Mealtime A meal tray was brought three times daily, fully loaded with a variety of food containers. Staff placed it in front of him and promptly left. No one explained what things were, or opened containers, peeled his banana, etc. People living with dementia are easily overwhelmed with meals presented that way. It’s often easier for them if just one thing is offered at a time. In addition, many people with dementia experience visual agnosia, a condition in which a person can see but cannot recognize or interpret visual information, due to a disorder in the parietal lobes. I often observe my family member picking up an object and not recognizing what it was or how to use it.
By taking a moment to describe what’s for dinner, opening a few items, presenting just one bowl, and handing the person the correct utensil, we can start the meal off in a positive, more helpful way.
Choice I observed a number of small, but ultimately irritating things, that I always ask staff with whom I work not to do, such as calling my family member “Honey” and “Buddy” (neither are his name), taking him to activity without asking him if he wants to go, keeping him in a wheelchair for the day even though he can walk, not cleaning his glasses, assigning a “shower day” without asking for his preference, repeatedly asking him what day it is, asking him who I was (he said I was a “good friend”), talking to him as if he was a small child… You get the picture. You have all seen this before.
I have been so lucky to work with person-centered communities that provide extensive dementia training that I simply cringe when these things happen.
All people should be given the choice to direct their care. If they are unable to verbally express their preference, someone should ask their family. We all want to make choices about even the simplest things in our life.
Care Planning
I was a guest at a Care Planning meeting for the very first time. Usually I am the one explaining, asking, and listening to the families – not the other way around. This time, I was told about dementia by a misinformed healthcare professional. This discussion was very trying for me, as we talked about coming home or not coming home, safety, the extensive amount of care at home that would be needed, etc.
I started feeling sad and scared. How are we going to manage all of this? If I, of all people, am feeling this way, how do families without a dementia specialist navigate all of this? Frankly, I wish no one had to deal with this.
To top it off, at the end of the meeting, one of the staff members had the following exchange with my family member (who has advanced dementia).
- Staff: “I don’t want you to transfer by yourself.”
- Him: “What is transfer?”
- Staff: “I don’t want you to go from the wheelchair to the bed, from the wheelchair to the toilet, from the toilet back to the wheelchair, or from the wheelchair to this other chair, by yourself.”
- Him: “What does this have to do with me?”
- Staff: “I don’t want to you get up or move without pushing this button. Do you see this button? You need to call us for help if you need to move from the wheelchair to the bed to the wheelchair to the toilet. We don’t want you to fall, so you need to push this button.”
I was speechless and simply overwhelmed after this exchange. Did she have his best interest at heart? Yes. Was she trying to do well at her job? Of course.
But, he didn’t understand a word she said. It was too much information, presented too fast, and in a confusing way.
We need to remember to break information down into bite-size chunks to make it understandable. We need to write things down, and go slowly step by step. We also need to realize that the person may forget what we said as soon as we leave the room. It’s not their fault, so we can’t get upset if this happens.
Connection and Purpose
My most successful visits to the rehab center thus far have been when I bring my therapy dog Lucy, and when I bring something interesting to do. My family member loves Lucy. Last night, he was sitting at the dining room table waiting for his meal and I showed up with Lucy. He immediately brightened. He might have forgotten my name last week, but he remembered hers. He said to his table mate, “She isn’t just my dog, she is a member of the family.” It was snowing and she was wet. He commented on her damp fur and it gave us a chance to talk about the weather, the fact that I had shoveled the walk, etc. It helped him to make a connection to our regular family life even though he was separate from it for the time being.
One of the best ways to help someone with dementia maintain their sense of personhood is to give them purposeful activity. My family member loves to fix things and work with tools, so I brought over a jar filled with nuts, bolts, and washers, a large tray, and three sorting bowls. I asked him if he would help me out and sort everything. He said to me, “Do you really need help or is this to keep me busy?” I laughed and told him that I really needed the help, that is was important to me the items were neat and tidy. He was thrilled to help. When I returned the next day, the first thing he said to me was, “I finished your project and I will take care of something else if you need me to.”
We all want to be needed! People living with dementia are capable of so many things, we just need to match their interests with their abilities, so they have success.
Thank You
I thank you for taking the time to read my deeply personal newsletter story this month. This thing called dementia is hard for everyone – the healthcare professionals who are trying to help, the families who are trying to cope, and the persons with dementia trying to live. If you know someone experiencing this, give them a hug, smile, or offer of help. It will be appreciated.
Be well,
Jennifer Brush
