The Truth About Dementia and Dignity
[Photo: Shows a smiling woman (Teepa Snow) with glasses and her hair in a ponytail on a red background. There is a quote next to her that says “Dementia does not rob someone of their dignity, it’s our reaction to them that does.” - Teepa Snow. Used with permission from Us Against Alzheimer's]
The advocacy and education group, Us Against Alzheimer's, created a wonderful photo and quote by Teepa Snow, dementia care education specialist, that says “Dementia does not rob someone of their dignity, it’s our reaction to them that does.” I loved this quote immediately, but was surprised to see on Facebook that some people felt it was inaccurate about dementia and not understanding towards care partners.
It is always hard to convey full meaning in a short quote. As someone who works with people with dementia, who was a care partner for my mother, and who focuses on person-centered care, the quote made absolute sense to me. If you do not know about this type of care, current research in dementia, and what dignity means within dementia care, the quote could be interpreted in a negative way. I wanted to share my thoughts with you to help shed light on the truth about dementia and dignity.
Some people, in response to the above quote, said dementia does take away dignity because many people with dementia end up needing to use adult diapers, confined to a wheelchair, and have trouble eating. A person with dementia may say or do things that they would not have done before dementia, they loose their memory, they loose their identity, and the person is "gone."
My mom had Lewy Body Dementia for ten years and for the last three years of her life she was unable to move any part of her body, except her mouth to eat and her head side to side, on her own. She lost her memory, slowly at first, then quickly. She could not speak almost at all for the last few years. She had behaviors that were unlike herself before the dementia. So, I understand that we may think dementia takes away a person's dignity. Sometimes it sure felt like that to me, and even to my mom. This was not something my mom wanted. Dementia was something she feared because her mother had it. She feared loosing her dignity.
But, what is dignity? Dignity is defined as: "the state or quality of being worthy of honor or respect." All people, of any age or ability or any sage of life are in a state of being worthy of honor or respect. Dementia does not take away dignity. No one and nothing can take away a person's inherent worth and dignity. However, we can treat people like they have no dignity, which can make them feel like they have no dignity.
First, let me take a step back, because our assumptions about disability and dignity are not just about dementia. We need to be aware of how we talk about disability and dignity for all types of disabilities. Many people who are born with or who become disabled early in life are very offended by the fact that society interprets being in a wheelchair, needing to use adult diapers, needing to be fed, having limited or severely compromised mental capacity, or not being able to talk, as an undignified way of life. We need to really look at what we think dignity is and how we impose our ideas of personal dignity onto other people. For more information on this issue, here are a few resources:
I still believe our lives and how we want to live them are a personal choice, but I, as a non-physically disabled person (I do have mental disabilities), really need to hear the voices of people living with physical and mental disabilities that are different than my own before I ascribe my ideas of what a life with dignity means for everyone else.
[Photo: A woman with grey hair wearing a bright green shirt and colorful ruffled scarf. She is sitting in a wheelchair in a large community room. She is sitting next to a young boy who is looking at her and talking to her as they work together. He has on an orange shirt and is working with some paper cut-outs and notecards. There is text in red above them that says "Living Well With Lewy Body Dementia."]
My mom always told us that she wanted to keep her dignity, and to her that meant keeping her engaged with her family, helping her be part of meals and holidays, giving her choices in life, respecting her voice, keeping her bathed, keeping her clean, and making sure she is well-dressed. That was how she defined expressing dignity for herself. See, the distinction? She always had dignity, because all people do, but those are the ways in which she wanted that dignity expressed. As care partners for people with dementia, we can strive to makes sure our loved ones expression of their dignity is maintained as well as possible.
We made sure to do all of those things for my mom, but I can tell you sometimes people would question why would we dress a person with dementia well, or put lipstick on her if she can’t move and “does not know who she is.” Why would we offer her two choices for lunch if she can not talk? I think this is what Teepa is talking about. People with dementia do know who they are, emotion and relational connection remains, even if memory is gone. They know what makes them feel comfortable and whole, they know how they want their dignity expressed and maintained, and they know how they are being treated. We would have been not honoring my mother's dignity had we not done the things she wanted and needed, to the best of our ability.
Many people assume people with dementia live an undignified life because of how we see dementia being cared for, particularly when people with dementia are assumed to be unable to be cared for well. However, that is an old idea of dementia care. Now we focus on person-centered care. "Person-centered care comes from a fundamentally different perspective, which puts considerable value on an individual’s right to make decisions concerning every aspect of her or his life." (Brush and Caulkins) This can be difficult, even for family members. In my family, we were fortunate because my mom always assumed she would get dementia, so she often spoke about what she wanted at different stages of her dementia care. And still, we messed up and did not honor her dignity at times. We made her feel like she had no dignity. Here is a story I shared in the book, I Care, about one of these times:
It was a typical family dinner at Mom and Dad’s house. Six of the adult kids, four grandkids, and one hired care partner all sat around the table with Mom and Dad; Mom sat at the head of the table like always. Mom’s Lewy body dementia has progressed so far in the past year that she is now physically similar to a paraplegic. She cannot move most parts of her body on her own, except moving her arms a bit up and down while they stay bent at a ninety-degree angle with her hands clenched, and she can move her head to look side to side. My sister sat next to my mom, carefully feeding her dinner, and I was at the other end of the long table. We were talking, laughing, and out of nowhere I hear Mom’s voice, clear as ever: “I am over here dying, and you are all ignoring me.”
We all became silent for a moment. You see, Mom does not talk much anymore, and when she does speak, often her words are garbled. Yet sometimes she says a full sentence, bright and clear, and insightful. This was one of those times.
After a moment of silence, we said, “You are right, Mom. We are ignoring you,” and so we started talking directly to her, involving her in the conversation. She sat for most of the rest of the meal not responding with more than the occasional smile, most often looking off to the side into space.
You see, we all accidentally do not honor the dignity of our loved one at times. Dementia is a tricky illness that is very hard to handle. We are given very little information about dementia and how to care for our loved ones with dignity and respect. We are told that a person with dementia is “gone,” can’t learn, can’t engage, and is perfectly happy sitting in front of a television all day. But, their behavior proves none of this is true...
When my mother told me, after 6 months of not speaking to me, “I love you, honey” when I said goodbye to her, she was there.
When you sit down at a table in an Alzheimer’s unit for a meal and a person with late-stage dementia tells you that you are in their seat and you need to move, they have learned.
When a person with dementia comes alive through hearing the music of their childhood, they are engaging.
When a person with dementia yells or gets up and wanders when they are left in front of a television, they are not happy with the situation we put them in.
As care partners, we will all mess up. I don’t want care partners to feel like they did not, or are not, doing a good job. Most of us are not given the proper resources to do this most sacred job.
So, below, here are a few of those resources we need. I promise you, as you read these materials, you will see how current research in dementia shows us just how engaged and dignified a life a person with dementia can have.
Creative Connections in Dementia Care™: Engaging Activities to Enhance Communication: This book focuses on using Montessori methods to show how to effectively communicate with a person with dementia, provide them with meaningful activities, and set up their environment for success.
I Care: A Handbook for Care Partners of People with Dementia: This small but mighty book is a wealth of information on best practices in person-centered dementia care and how to make sure those happen in a home environment or in a professional care community. It is essential for care partners because it has all the information you need in a small enough format to actually read it all.
Dementia Beyond Drugs: “An experienced geriatrician exposes why our current system of nursing homes and long-term care produces misery in our elders, particularly those with dementia, and foils the efforts of genuinely caring and compassionate staff to provide a better life for them. Through illuminating examples, see how a radically different approach to dementia care reduces the need for harmful psychotropic drugs and transforms how we engage the people living with this debilitating disease.”
TeepaSnow.com: Teepa Snow’s website all about a positive and respectful approach to dementia care.
Spaced Retrieval Step by Step: An Evidence-Based Memory Intervention: This book uses cutting edge research to show how people with dementia can learn and how we can help them navigate life more effectively. This book will change your idea of the stigma of dementia.
To hire a person who can work with you or you and your loved directly, or where you can receive individual or group training:
Rev. Katie Norris, author of Creative Connections in Dementia Care™ and Certified AMI Montessori for Aging and Dementia practitioner.
Jennifer Brush, from Brush Development Company: Creating Environments Where People With Dementia Flourish