Sonya Barsness, Revisionary Gerontologist
Originally printed November 2, 2018
Being Heard, The Voice of a Revisionary Gerontologist
Al Power, geriatrician and advocate for people living with dementia, tells a great story that Richard Taylor once told him. Richard Taylor is a person who lived with dementia and dedicated his life after his diagnosis to creating awareness of the experience of dementia.
Richard was visiting a nursing home and watched a group of ladies who lived in the “memory care unit” folding laundry. One of the women motioned for Richard to come over.
“You know what they are doing here, right?” she asked, as she motioned to the laundry. Richard shook his head.
“You see, they bring us these baskets of clothes for us to fold. When we are done, they take them back over there, unfold them, and bring them back for us to fold again.”
Richard asked, “Why do you keep doing it?”
The woman said, “Well, it’s better than a stick in the eye.”
Al closes the story by asking us, “Can we do better than a stick in the eye for people living with dementia?”
I believe the things we do to try to support people with dementia almost always come from a good place. We want to help them. Many times we do not know how. So, we do our best at that time. One might argue that something is better than nothing.
But, is it? How can we do better?
I was remembering Al’s story as I heard this quote from Kyrié Carpenter: “When people are starving, they will accept anything.”
These simple and profound words were said in reference to a discussion about “fake” things we give people with dementia (in this case, it was fake pets, baby dolls, etc.). It resonated with me deeply. It kept nagging at my brain.
As I thought about it, it occurred to me that this statement held broader meaning and deeper wisdom outside of its original context. It challenged me to consider how the truth of this — that people are starving and will accept anything — might hold for many aspects of how we try to support people living with dementia. It brought up many questions for me.
Is a part of our current paradigm of dementia the idea that “anything we do for people with dementia is ‘good’,” because dementia is so bad?
If people are starving, and they will accept anything, is what we are doing for them really helping them? Is it what they really need?
How are we paying attention to whether these things are actually in line with person-centered values that honor people with dementia as whole human beings, and as individuals with needs that are varied and unique to each person?
Dementia is life-changing. I have had the honor of collaborating with people living with dementia and their care partners for many years, and I can tell you without reservation that they are starving.
They are starving for information and support. They are also starving for relationship, connectedness, ways of finding purpose, being treated equally and with dignity, and many other things. People are suddenly plopped into this world of dementia without a map, and it is scary as hell. The maps that are available do not present the whole picture of dementia, but only pieces of it, so they only know what they know, and don’t know what they don’t know. When they find “directions” they are not always certain whether they are the right ones.
A person with dementia goes to the doctor to get her diagnosis. The doctor tells her she should not worry, she just has a touch of dementia. She is starving for something, anything, and she accepts this.
A family member is at wits end with his wife, who is living with dementia, because she gets angry when he helps her get dressed. He tells his support group, and they tell him that he needs to ask for medicine for her to be more cooperative. He is starving and accepts this. His support group is also starving and has accepted this.
I have sat with family members who tell me the things they have found on the internet that promise a cure. People with dementia tell me how they are told by someone or read somewhere that they just need to do Sudoku, eat blueberries, exercise, etc. and that will cure their dementia. People with dementia read that they will become sundowners. They are told that all people with dementia will become angry and violent.
They accept these things. They are starving.
This is an important thing to recognize, because when we know that people are starving, and that they will accept anything, we need to be really mindful of what we are offering them.
I do not mean to suggest that people with dementia and their care partners are, or should be, passive recipients of information. However, we perhaps need to acknowledge that this is also a part of the current paradigm of dementia (and needs to be changed) — that “we,” the “professional experts,” hold the information, which by virtue of it being held by the experts, makes it “true.” So, people accept it.
The perils of being starved and accepting anything are especially concerning in education about dementia. People are starving for knowledge, so the danger can be that any education is good education. People with dementia and their care partners accept this knowledge, and apply it.
Even if it is education that refers to people living with dementia as “demented,” or labels them as aggressive, non-compliant, sun-downing, wandering, etc.
Even if it is education that supports a paradigm of dementia that sees people with dementia as problems, weird, different, no longer there. That labels their normal expressions and actions as medical problems, without considering why they are expressing themselves that way, what their needs are, and how they can proactively seek well-being.
Even if it is education that supports a paradigm of dementia that creates more disability than the disease itself.
They accept it, because they are starving.
When we know this, that people are starving and will accept anything, maybe it will encourage us to be really mindful of what we are giving people. Maybe it will remind us to listen more, and speak less. Maybe it will consider broadly what we are saying about dementia through our education, our services, even our research.
Yes, even research. Here is one small example. We provide education about dementia to a group of people, we test them to see whether they have learned what we taught them, and we find that they have. However, perhaps we have taught them a paradigm of dementia that is purely medical and not person-centered, one that does not include the perspectives of people with dementia. They are starving and will accept anything.
Is it better than a stick in the eye?
It is not born of ill intent. We have tried to support people in the way we thought was best. And because they accepted it, we assumed it was okay. But it is time to rethink this. People with dementia and their care partners are still starving. But they should not accept just anything. Let’s give them something better to accept. Maybe even more than accept, but enable and empower.
I would like to see us come to a place where everything we do to support people with dementia, including education, reflects person-centered values. To me, person-centered values honor who a person is and what is important to him or her, and are lived through interconnected relationships with others who know and honor what is important to a person.
Here are some preliminary questions that we can ask ourselves, from my perspective and experiences of hearing the voices of people living with dementia and their care partners, that help us to consider whether person-centered values are present (or absent).
This is not an exhaustive list, but these are some of the things that I think about when I look at information, articles, books, educational programs, presentations, movies, podcasts, blogs, products, supports, services, etc. related to dementia.
- Does it include the perspective of the person living with dementia and those who support him or her? (Or, does it only include the professional perspective?)
- Does it encourage us to ask for, and be curious about, the perspective of dementia?
- Is there an emphasis on what is important to the person with dementia? (Or, does it include paternalistic views that suggest “we” know better than “them”?)
- Is there an emphasis on who that person is, including the multidimensional aspects of who people are, not just their cognition?
- Does it honor each person with dementia as an individual? (Or, does it categorize people by their weaknesses or disabilities? Does it generalize the experience of dementia to groups of people?)
- Does it account for the importance of relationship and partnership?
- Does it include well-being and its various domains?
- Does it present a balanced view of dementia to include the more-than-medical experience of living with dementia?
- Is there a focus on LIVING as the primary goal? (Rather than care and support being the goal in itself?)
- Is the language person-centered per guidelines developed by the Dementia Action Alliance? (Or, does the language label people with dementia or their actions?)
- When describing the actions and expressions of people with dementia, is there an attempt to try to understand how people act and why they act that way, honoring human expressions? (Or, does it medicalize what could be normal for a person, describe these actions and expressions as behavioral and psychological symptoms, or problem behaviors?)
- Does it include strengths of people with dementia? Does it focus not just on what people can’t do, but what they can do?
- Does it encourage autonomy of people with dementia?
- Does it encourage us to see people with dementia as people who are experiencing the world differently, and doing their best? (Or, does it frame people with dementia as problems to be managed?)
- What else??
As Spiderman’s Uncle Ben said, “With great power, comes great responsibility.”
The true superheroes are people living with dementia and their care partners. And we have both the power and the responsibility to do better than a stick in the eye for them.