As a revisionist gerontologist I believe we need to change the paradigm of aging and dementia.My work is about promoting and applying a paradigm shift to everything we do WITH people growing older and growing with dementia.
I am 23 years old. I am working for a neuropsychologist who generously decides he believes in me and wants to support me in my own quest to become a neuropsychologist. He teaches me how to administer several types of assessments to screen for dementia and depression. So off I go to the nursing home, in my thrift store blazer so I at least appear to be a professional.
I am meeting with Mrs. Sabotino. She is of Italian descent, even having a trace of an Italian accent. She is barely five feet tall. She just moved into the nursing home. I am a little nervous, as I always am when I ask these questions. She is warm and seems happy to have a visitor. This makes me more nervous because I know I am going to disappoint her, as I am not here to socialize with her. I start with the Geriatric Depression Rating Scale.
I clear my voice.
“Mrs. Sabotino, are you basically satisfied with your life?”
Mrs. Sabotino shrugs. Looks out the window.
I wonder how long I am supposed to wait. Can she hear me?
She interrupts my thoughts.
“When I can make the sauce…..”, she says evenly.
I make a mental note. Clearly dementia.
I confirm, “When you make the sauce?’
“Yes.“ Mrs. Sabotino nods at me like she is bored.
“Have you dropped many of your activities and interests?”
She shakes her head. “Yes, because I cannot make the sauce.”
I write down “Yes?”
I start to panic. Maybe Mrs. Sabotino is not going to answer my questions! What do I do? I don’t think I am supposed to be chatty with her. I decide to stick with the plan.
Okay, next question.
“Do you feel that your life is empty?”
She nods more vigorously. “When I cannot make the sauce!!”
“Do you often feel helpless?”
“Yes, that is when I cannot make the sauce.”
“Do you often feel downhearted and blue?”
“Yes.” Mrs. Sabotino nods sagely. “Because I cannot make the sauce!” Her voice raises slightly.
Oh, boy. I was definitely not trained for this. I am in full blown panic mode. Do I write notes about the sauce? I carry on.
“Do you feel pretty worthless the way you are now?”
Mrs. Sabotino takes my hand, and looks right at me. “You see….I cannot make the sauce.”
We go through the rest of the questions, and each answer is sauce-related.
Although I am a bit confused myself, I decide to administer the mental status exam to her. She gets a low score, one that would indicate, according to neuropsychological interpretation, that a person has limited awareness and high levels of confusion.
Yet, Mrs. Sabotino knew how much she wanted to make the sauce. She was very aware of that. She was not confused about that. She was very certain about that. She knew there was something missing in her world. She could see it. Maybe even taste it. Maybe she could not say where she was. Maybe we would say she was not oriented. But she could tell me WHO she was. She could tell me what was important to her.
I wish I would have asked Mrs. Sabotino more questions. Not questions about counting backwards from 100, or if she would draw a clock for me. But things like, “Who do you make the sauce for?” “How do you make the sauce?” Or even, “Yum, how good does that sauce taste?” I wish I could have listened more.
I wish I would have made sauce with her.
After some time, I decided that neuropsychology was not a great fit for me. And I am eternally grateful for the many people who tolerated my questions, especially Mrs. Sabotino. Something started unraveling in me that day, and made me start questioning how we see people living with dementia. Or, maybe, more accurately, how we do not see them. That sometimes we are looking to see something about them, usually something that is wrong with them, and miss all the other things that are right with them.
I was talking with a group of elders about their experiences in the nursing home where they lived. We were discussing what it was like when they moved in.
“Overwhelming. Confusing. Scary. Relieving.”
Then one of the elders, Geneva, shifted in her wheelchair, cleared her throat, and said this:
I am so fortunate to be present during these moments of deep truth.
Geneva had all the usual assessments that you have when you move into a nursing home. She even had people ask her about her life history, who she was, and what she did. They also asked her some questions about her daily preferences. When did she like to get up? What did she like to eat? These are important questions.
But nobody asked her how she wanted to live.
Do we not think this is an important question? Do we think this doesn’t apply to people living in nursing homes?
I think we are a little afraid of this question. What does it mean? But I think if we really unpacked it, we would see that it is a Fundamental Question. And it is not just something we don’t ask people living in nursing homes. It is also something we have neglected in the creation of the long-term care system we currently have. A focus on living.
“Sonya, hold on, let’s say we ask people this question. Then what do we do? We won’t be able to create the lives that people want to live!”
“Sonya, you are clearly living in a fantasy world. How in the world could we ‘focus on living’ in nursing homes as they are now? I mean, have you been in a nursing home lately?”
“What does that even mean, weirdo? A focus on living!”
“It is not our job in nursing homes to facilitate ‘living’ for people who live there.”
“Um, I do not think of ‘living’ when I think of nursing homes. Nursing homes are where people are dying.”
(Those are the voices. I hear them when I say something that is outlandish. We have to listen to them. They are the ghosts of long-term care past and present. But they help us understand what the future could be. I like to talk back to them……)
Yes, exactly, dear voices. Our current system is not built to focus on living. This is why we have to change nursing homes (and senior living). The current paradigm of nursing homes does not support living.
Yes, and, we have to try to unpack this question for the people currently living and working in nursing homes. We have to both create something totally new, a new system that focuses on living, AND find new ways to focus on living now.
Yes, we need to really think about HOW we ask people in nursing homes “How do you want to live?”, and WHAT it would really look like if we focused on LIVING in nursing homes.
Yes, we do need to ask ourselves what we see as our jobs. If it is not our job to facilitate living for people, then what is our job? If we feel our job is to just maintain bodies, then no wonder we would struggle with wanting to keep doing these jobs. We might then ask ourselves, How do Iwant to live (in this work)?
Yes, people are both living and dying in nursing homes. I don’t think we need to avoid this reality. But this perspective does not really make sense to me. If nursing homes are about dying, wouldn’t we at least be focused on people dying well? If nursing homes were about dying, would we force people to do things they don’t want to do, in the name of keeping people alive? If nursing homes are about dying, wouldn’t they be about living well?
It is worth noting that people living in nursing homes and assisted living need our support. That is why they are there. I believe that they have an idea of how they want to live. And that they might need our support to not just be “kept alive”, but LIVE. When we are talking about how people want to live, we are talking about more then how they want to receive care. They still need care, but how they want to live directs that care.
And, yes, I have been in nursing homes recently. This is why I know Geneva’s question is important. This is why I know it is not being asked. This is why I know nursing homes need to change.
Where do we start in better understanding this question, “How do you want to live?”
We are sometimes very tempted to get to the answer right away. But there is so much value in taking some time with this question. Let’s keep in mind that sometimes the question is more important than the answer.
“I beg you, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.”
Rainer Maria Rilke
We can start with this question, “How do you want to live?” And live and love this question until we come to the answer.
Maybe we can try first to “love the question”. By loving this question I mean getting curious about it, committing to it, embracing it, and trying to get to know it. Seeing it not as a problem to be solved, but as a path forward. What does this question mean? Why is it important? Why does it make us uncomfortable? What can it tell us?
Here is what I mean by living it.
Once, when I gave a presentation and told the story of Geneva, a participant said, “I can’t even answer that question for myself. How would I ask that of someone living in a nursing home?”
I appreciate the honesty. This comment validates that “how we want to live” is not something we think about deeply enough. Maybe it validates our belief or our fear that people living in nursing homes cannot answer this question. Or maybe we are afraid of what they will say.
We still need to ask the question.
But I hear the voices again.
“Sonya, If I asked Mrs. Stewart how she wanted to live I am sure she would tell me ‘Not here!’”
Yes, voices. And that is why we need to ask her and live this question with her.
What is she telling us?
Perhaps she does not want to live there because she is not really LIVING there. Know what I mean?
Maybe she is really struggling with physical changes and she can only see how she used to live, when she was on her own and “free”. Maybe she cannot right now even see the future of how she wants to live. Maybe she is really, really sad that had to leave her home, and maybe, by us asking her about how she wants to live, what is important to her, we can work together on healing that sadness and creating something new for her. Maybe?
Maybe there are other questions we need to ask her. This is living the question.
If we asked this question, “How do you want to live?” we would need to recognize that this question is difficult for many people to answer. Maybe no one ever asked them that before. Perhaps they never felt they had the luxury of living the way they wanted, even before they lived in a nursing home. Maybe society has sent them messages that they are not important, because of their age, the color of their skin, their gender, their socioeconomic status. Maybe they are afraid to say the answer, because they do not think it is possible.
But this question being a difficult one is not a reason to not ask it. We need to use our human ingenuity, creativity, and spirit to find ways to ask this question in ways that people feel they can answer.
Because we do not ask this question, we really have no idea how people will answer it. We worry that people living in nursing homes will say things that we feel we cannot give them. But we have to live the question and see where it goes.
The voices of nursing home past and present remain.
“Sonya, the people we have here cannot answer that question.”
I was recently in a nursing home and I saw people who had not left their rooms for days, maybe months. I saw people who only had the television for company. I saw people who slept most of the day. I saw people who are “clean and fed” but have no contact with the world.
How do we live the question with them?
How would they answer this question, “How do you want to live?”
Surely, they would not say, “This is how I want to live. The way I am existing right now.”
It is hard to tell whether these humans have given up on living, accepted this as living, or have no opportunity in which they can truly live.
Do we not ask the question?
Again, the voices.
“Sonya, what can we do?”
“We don’t have the staff.”
“We don’t have the money.”
“Something is better than nothing.”
“This is just the way it is.”
Yes. The system is broken and it has to change.
Not only did Geneva articulate the question that we do not ask people living in nursing homes, she also nailed what is possibly the fundamental reason why nursing homes are broken. We say it is the reimbursement system, the survey system, insufficient staffing, regulations, money. But really, underneath it all, it is because nursing homes do not focus on living. These other things are just symptoms of the disease.
When we get to work on changing long-term care, it has to start with focusing on living. If we just keep putting bandages on the cracks we will just have a very wounded system, with lots of bandages, but no living.
It seems like we have a circular argument. We know that the current system does not focus on living, so we feel we cannot ask this important question of “How do you want to live”. By not asking the question, we miss the opportunity to better understand it. So, we perpetuate a system that does not focus on living.
Let’s break this cycle and live the question. “How do you want to live?” We have to try to live our way into an answer. For both the new system we want to build, and the people who are living, but not LIVING, in nursing homes right now.
How can we live the question? There are tangible things we can do right now to start to unpack this big question of “How do you want to live?” Here are ideas to start:
Try this question with yourself. With your family members and friends. Pay attention to how we interpret the question. Where does the conversation go? Can we answer it easily? Why or why not? What makes it clearer?
Try the question with people living in nursing homes. Try it in groups or one on one with people. “How do you want to live?” See what happens. Go with what they say. Listen. Ask more questions. Ask them what this means to them.
Try different questions. Maybe ask “What is important to you?”, even something very concrete like, “When you think of what a good day looks like, what comes to mind?”.
For people who are not able to communicate with words “How do you want to live?” brainstorm how you can explore this question with them. What lights a person up? What makes them feel good? What does it mean to “focus on living” for this person?
Try the question with older adults who are not living in nursing homes.
Think about how we can connect this question of “How do you want to live?” with existing tools we might use to ask about a person’s daily preferences. How do we tie a person’s preferences to helping a person live the life they want? (E.g. How does what time someone likes to get up be tied to how they want to live?)
Discuss what it might look like to create a nursing home that is focused on living. How do you create a community that truly supports people to live life the way they want to live it?
Brainstorm how a tool like Artifacts of Culture Change could be tied to this big question of how people want to live. How do we create a culture of living?
The more we understand this question, “How do you want to live?” the better we can build lives that people want to live, and systems that support it. The better we can create communities that support living for both the people who live and work in them. The better we can understand what it means to focus on living.
Writing this caused me a lot of agita*. Because I don’t have the answer. But I believe in the question.
Thanks, Geneva. I hope someone will finally ask you this question.
*Agita is a term (that I assume is real) that my mom always used to express that something upset her. It was used to express more than frustration. It is a deep feeling in the pit of your stomach when something is just not right.
My colleague, “Trina”, has a mom who was recently diagnosed with “early stage” or mild dementia.
Trina works in healthcare and is well-versed in person-centered care, which encourages us to honor the individual and what is important to her or him. In her work, she promotes care partnership as a person-centered model for how people with dementia can obtain support from people in their lives, in the spirit of collaboration. Yet, she feels that she is failing at care partnership with her mom.
She poses this question to me, “How can you have a care partnership when a person with dementia does not want a partner?”
She is frustrated because her mom does not want her help, thank you very much. She is fine, she tells Trina. Mom does not want her to be involved in her care. Mom has denied Trina her offers to attend medical appointments with her. Trina had presented this as a way her mom could have an advocate at her side. Someone who could help her ask the right questions. Help her remember the torrent of information that would be given to her in an appointment. Remind her mom to tell the doctor that she has been feeling dizzy. Her mom assures her that is not necessary.
After her mom was diagnosed, Trina had visions of sitting down with her mom and talking through her goals, wishes, preferences. Collaboratively coming up with ways for her mom to LIVE life, with some adaptations, but fully. Seeking out supports that can help her to do the things that she wants to do. Being with her to fight the tragedy narrative of dementia by focusing on joy and living. Being a care partner.
But her mom doesn’t see the need for any of that. She is fine.
Yet, Trina explains to me, she is not fine. She has forgotten to tell doctors important information about her medical history, resulting in a misdiagnosis. She has been forgetting to take her medicine. Trina sees that her mom has started limiting her socializing and stays in her house most of the time, by herself. Trina suspects her mom is isolating because she feels embarrassed, scared, and overwhelmed. Trina does not think her mom is in imminent danger. But she also does not think she is doing great.
Trina laments, “If only she would let me be her partner. I could enable her to live better. Instead, I fear she is disabling herself.”
How can you have care partnership when a person with dementia does not want a partner? Can you?
It seems that there needs to be partners to have a care partnership. However, not every person with dementia wants to have a partnership, or has a partner. For some people with dementia, they do not have a family member or friend who is able or willing to be their partner. Some of these people navigate dementia by themselves, or seek out professional care partners.
But what about people with dementia who have able and willing family members or friends available but they just don’t want to have a care partner?
Why would a person not want to have a care partner, if there was one available and willing? Some possible reasons….
It could be that the person has always been an intensely private person, so this is not a natural or preferred way of relating.
It could be that the person is truly in denial about their diagnosis of dementia.
It could be that the person has challenges cognitively processing their diagnosis, so that it is difficult for them to understand its depth and impact.
It could be that the person is adamant about not accepting help or support from others.
It could be that the person with dementia is trying to protect their potential care partner. They don’t want to be a burden to them. They don’t want to bring them down.
It could be that they don’t trust the potential care partner. They might not be comfortable with that person. They might be fearful that she or he is going to take over their life. They might have had a rocky relationship with that person.
It could be that they have fears about losing their voice, and are unsure about what a care partnership would mean for their desire to be self-directed.
Yet, a person living with dementia might really benefit from having a care partner. Actually, they might need one. It is difficult to do dementia alone.
Is honoring the choice of a person with dementia to not participate in a care partnership a way of living out person-centered values? Is Trina still a care partner even though her mom does not want one? By Trina’s mom not participating in a care partnership, is Trina feeling more like a caregiver instead of a care partner?
Are there ways that we can approach care partnership so that a person with dementia might be more open to it?
Do we adequately talk with people living with dementia about care partnership? Are we sometimes afraid to suggest to a person with dementia that a partner is helpful and might even be needed? Can we have conversations with people with dementia about who they would like to have as a partner? We should not assume it is a family member. It might be a friend. It might be a professional.
Perhaps conversations about partnership need to happen before we have dementia, or very early in dementia, like when a person is first diagnosed. Perhaps we all need to have these conversations, well before we might be diagnosed with dementia. We have similar conversations about advance directives, where we choose a person to serve as our decision maker at the end of our lives. But what about someone to support us to LIVE, if we develop dementia?
If we do not have these conversations, we might find ourselves in situations in which there is no “partnership” until the person with dementia has more difficulty with daily life and decisions. Then we, as “care partners” might shift to a relationship in which we are having a larger role in a person’s life, maybe even making decisions on their behalf, and because there really wasn’t a partnership before, we are struggling with how to be a care partner. Maybe then we are less sure about what the person with dementia really wants, because we never really had the opportunity to be a partner. Maybe we even make decisions for that person with dementia that are not really in line with what they want, because we didn’t have that practice of collaboratively learning what they want.
How do we have these conversations earlier so that care partners are more comfortable with the idea of partnership and can talk about what it means to them? Where both parties are prepared to know how to talk with each other, and listen to each other? How do we help care partners communicate with each other so that they learn and practice seeing each other’s perspectives? How do we help care partners define what their care partnership looks like?
As we think about how to have these conversations about care partnership, it seems important to consider the ideal elements of a care partnership. What are we agreeing to? What are some of the building blocks? Maybe they are some of these:
The person with dementia, the person needing more support, is willing to accept support, and is willing to engage in honest discussions with the care partner about their needs. This might include being willing to share details of their medical or health status that would be helpful for the care partner to know. If a person needing support chooses to not engage in honest discussions, or share their needs, the care partner might start to engage in behaviors that are perceived as “overstepping”. This might include communicating with a medical professional without the participation of the person with dementia or making decisions for the person based on what the care partner thinks is the best thing to do.
The person offering support is willing to listen to the needs and wants of the person needing support. They are willing to try to understand what the person with dementia is experiencing.
The person offering support cannot assume that a person living with dementia can or can’t do something entirely based on their diagnosis or age. The person needing support is open to the idea of adaptation.
The person offering support is willing to work WITH the person to achieve their goals, and does not adopt an “authoritative” stance with the person needing support. This means that they are not trying to manage or control the person, such as by automatically “telling” the person they cannot do certain things, or preventing them from doing things. To be fair, there are times when a care partner might need to make these difficult decisions, like preventing a person from driving when they cannot drive safely, but these decisions are ideally made in collaboration, and keeping in line with what is important to a person (e.g. “I know it is important for you to have coffee with your friends every Wednesday so I have set up a way for you to get there and it is a sweet ride!”).
This brings me to trust.
For both “parties” there needs to be trust. The person needing support has trust that the other person is well-intentioned and honest. The person needing support trusts this person with sensitive information. They trust that the person is not intending to harm them, or cause them distress. They trust that, even when a care partner might tell them something they don’t want to hear, they are doing so out of a caring relationship. They might trust that the care partner is seeing something about a situation differently, and their perspective might be valid.
The person offering support trusts that the person needing support is being honest about what they need. They trust what is important to a person with dementia. They trust that the person needing support has a valuable perspective, and it needs to be heard.
Which brings us to empathy.
It is hard to be diagnosed with dementia. It is hard for people to accept the challenges that dementia brings. People with dementia live with a lot of stigma, including ongoing messages that they are “not there” or can’t do anything anymore. It is understandable that a person with dementia might not want to talk about it, or share it with others. They are doing their best.
It is hard to support, or try to support, a person with dementia. A care partner has to adapt to the changing needs of a person with dementia, and to hopefully do this with patience, humility, and openness. Care partners inevitably will make mistakes, and learn from them, and try again. They are doing their best.
Let’s not forget about reciprocity as the basis of a care partnership.
A care partnership is not always even. Sometimes there is more giving than receiving. It is important for care partners to consider reciprocity and how both can practice it. Maybe talk together about these questions: How can the person with dementia give as well as receive? Even when the person with dementia is needing more support, how can they support the other person? How can the person offering support seek and accept support from the person living with dementia? When the partnership is less balanced, so that the person with dementia is receiving more support, how can they partner together to ensure that each live with dignity and well-being?
What is Trina going to do? She is not sure. She said she is hoping that her mom will read this blog (ha!). Maybe she will try to talk to her mom more about it. Maybe she will ask questions and listen more. Maybe she will ask her mom about her understanding of her diagnosis and how she feels about it. Maybe she will ask her what is important to her. Maybe she will try to assure her mom that she is a collaborator, not an authoritarian. Maybe she will honestly share her feelings with her mom, that she is worried her mom’s discomfort in asking for, and accepting, help will ultimately cause her mom to have even a harder time than she already is.
Maybe Trina will need to accept that a care partnership is not yet possible. And it might not be. But she will just be there for her mom and still practice person-centeredness, honoring who her mom is, and her mom’s choice to not have a partnership, even though she is still an ally.
This is a hard letter to write. We have been together almost 30 years. That is a long time. But I need to tell you something.
I don’t think this is working. I can’t do this anymore.
It’s not you, it’s me.
Well, that is not true. It is you.
But I can’t blame you for who you are. I know how you were raised. “Be a medical model!” they told you. “Just worry about the body, not the spirit!” they said.
“Remember, safety first!” was burned into your brain.
“Don’t worry about what people want. Worry about what the rules say they should have!”
“The most important thing is to be efficient!”
It must have been difficult to have heard this over and over again. How could you not become what you are?
Of course you don’t know how to have joy, to live well, to focus on meaning and purpose. Of course you don’t value normalcy and community and connectedness. No one probably gave that to you when you were growing up. They tried to make you compliant, hard, sterile.
You are exactly what you were raised to be. How can we fault you?
Yet I do. I have. It breaks my heart.
I can’t watch you treat the people around you like this anymore. Don’t you see how people give their heart and soul to you? You barely acknowledge this.
You see people for everything wrong with them and you want to fix them – but not because it is what they want. I think it is because you are afraid. Afraid to see people for who they are – complicated, vulnerable, mortal, self-determining, full of risks. Yet also full of possibilities and life.
It is never you. It is always “them” – the people who live with you, the people who work for you, the people who visit you, the people who make the rules, the people who pay you. But it IS you!
I am at a point where I don’t think you can change. I guess I have to accept that.
But I am so angry about it. And sad.
I mean, do you really want to be this way?
No one wants to go to you, you know.
Why would they? You are not going to give them what they really need.
Why can’t you be the nursing home I want you to be?
There were good times, of course.
I sometimes still think I can change you. Because I see glimmers of hope in who you can be.
But I have been fooled by you before. You get a different “look” and try to trick me that you are different because you look different. You change your name. You tell me you are doing a new “program”, like that sticks around!
You start using different words to describe yourself. By the way, just because you use these words to say you are doing something different doesn’t mean you are doing something different.
I guess you think you are doing the best you can with what you have. Maybe that is true. But I don’t believe it. I know you could be better. But I am not sure you want to be. I am not sure you know how.
So, what is a person to do? Stand by and watch you self-destruct?
Just don’t take down everyone with you. These are good people. They deserve better.
I deserve better.
That is the reason why I have trouble letting you go.
A large part of my work is changing the way we think about dementia. In order to change our thinking, we need to question what we already “know”.
When we see information about dementia, particularly if it is from a popular source, we might assume that it is “the answer”. Yet, we need to also keep in mind that our knowledge of dementia is constantly evolving, dementia is complex, and the way we attempt to describe what dementia is might not be adequate.
It is time that we question how we explain dementia, especially on public sources of information that are trusted. We need to consider that the information out there might be misleading, is not fully explained, might only provide one perspective, usually a medical one, and is not person-centered.
Maybe you are questioning what I mean by questioning how we explain dementia. I am glad you are questioning! We need to question.
Let me start by clarifying that when I say we need to question how we explain dementia, I mean both how we describe dementia overall as well as its causes, like Alzheimer’s. For purposes of simplicity I am going to just use the term “dementia” in this article. Just know I mean dementia and its causes.
There is already a long history of confusion about how we explain dementia, especially related to the difference between dementia and its causes. Most information sources will now make this distinction, which certainly helps. However, I am going deeper and talking more about the way we describe dementia and its causes– What is dementia? What is Alzheimer’s? What happens when a person has dementia? What are the changes a person is experiencing?
It is important to rethink how we describe dementia because the way we talk about dementia, even in its basic description, sets the stage for how we think about people with dementia and how we support them.
What are some examples of descriptions about dementia that we need to rethink?
If you look up “What is dementia” (or “What is Alzheimer’s) usually a description will include information on signs and symptoms. Typically, a list will include things like memory loss and confusion. And then it will also include things like personality changes, inappropriate behavior, agitation, paranoia, and hallucinations.
This is, at minimum, confusing. Maybe even misleading or not entirely accurate. What do I mean?
Let’s start with the word “symptom”. Part of the challenge in how we describe dementia is in using the word symptom to describe what we see in people with dementia. Although it is a medical term the word symptom itself is pretty open to interpretation. It is generally defined as subjective evidence of disease or a medical condition. It is thought to be something experienced, as opposed to observed. However, in everyday use, symptoms might be considered anything noticed about (or by) a person that indicates “something is wrong with them”.
It is confusing to use the term symptom when explaining dementia. It allows us to call anything that a person with dementia experiences, or is observed by others, a symptom. Even if that thing is a normal human behavior. Even if it is not really physiologically connected to a change in the brain.
Sometimes I find it helpful to think about other medical conditions, and how we treat them, when I am trying to understand something better in the dementia world. So let’s use the example of migraines. I get migraines. When I have a migraine, I would say my symptoms are head pain, visual disturbances, vomiting, stomach irritation, etc.. I probably wouldn’t report as symptoms the other things that I am also perhaps experiencing – irritability, self-isolation, apathy, avoidance of social interaction.
It would be confusing to say that symptoms of migraines include irritability, self-isolation, etc. Right?
They could be related to my migraine, because when you feel that bad you are irritable, self-isolating, and avoiding social interaction. But they are not directly related to the physiology of migraines. In fact, they might be related to many other things, some of which might not be about my migraine at all. As a symptom, how would irritability help diagnose my migraines? It is not uniquely symptomatic of migraines.
Back to dementia.
Similarly, having “agitation” or showing “paranoia” may or may not be related to dementia, or might have many other explanations. Yet, they are described as symptoms.
It is debatable that these symptoms are directly related to changes in the brain that are the result of brain injury from the various causes of dementia. . On the other hand, memory challenges are more clearly connected to changes in the brain. Yet, when we hear all of these things described as symptoms, one assumes that they are all direct medical manifestations of dementia. Doesn’t it seem confusing to describe dementia in a way that puts all the things you are experiencing in the one bucket of “symptoms”?
What is a symptom, really? Is this a meaningful way of describing dementia? Is it helpful to say a symptom of dementia is paranoia or suspicion of others? Wouldn’t it be more helpful and, perhaps accurate, to explain that a person with dementia might accuse family members of stealing or lying, and that this is because a person is trying to make sense of the world around him or her. This is not a medical symptom, but something that might happen.
Wouldn’t it be more helpful to actually describe the cognitive changes that a person might experience? That in order to be diagnosed with a neurocognitive disorder a person will experience challenges in these areas of cognition, and that this looks different for each person? Do we need to frame things as symptoms?
As we get deeper into the descriptions of dementia, we then also need to rethink how we talk about some of specific “symptoms” themselves.
Like “personality changes” as a “symptom” of dementia.
First, what does “personality changes” really mean? We all act differently in different situations and sometimes we change. Personality psychology has long found that personality is about BOTH stability and change. In other words, some aspects of our personality change throughout life, and some do not. We go through situations that might require or influence personality change, and then we also have periods of personality stability. Personality is not set in stone for any individual. Saying personality change is a symptom of dementia suggests it is pathological. This is confusing.
Second, couldn’t there be many reasons why a person is acting differently, particularly if they are experiencing cognitive changes? If I am having difficulty making sense of things because parts of my brain are working differently, due to a disease or condition or injury, isn’t it possible that I might act differently? Perhaps to an outside person, it seems that my personality has changed. But is this a direct cause of dementia? Or is this a normal human response and maybe adaptation to cognitive changes?
Certainly, there are parts of the brain affected by types of dementia that might directly influence how we are acting. Maybe the part of our brain that helps regulate our emotional responses, such as anger, is impacted. So, it might be easier in some experiences of dementia for a person to get angry. But this could the same for my migraines. Perhaps the pain experience of migraines results in a lessened ability to regulate my emotional response of anger, so that when my husband walks into my nice, dark room where I am recovering from my migraine, and turns on the light, forgetting I am in there, I yell at him in anger. That would be a personality change for me. But not pathological.
What difference does this make?
Here is what I see happen.
A person goes to the internet to find information on dementia as she is worried about her husband. She looks at the symptoms and is alarmed because he is definitely having difficulty concentrating and remembering things. And, then, she sees personality changes as a symptom of dementia. She thinks back to last weekend, when they were in church. Her husband is an usher and in the middle of the service he became very confused about what he was supposed to do. He did something incorrectly, and it actually stopped the service. She was embarrassed and tried to help him. He became very angry at her and yelled at her to sit down and get out of his way.
Personality change! Yes, that is what her husband is showing.
Her husband is diagnosed with vascular dementia. His cognition gets worse, and she continues to care for him. She notices that there are other things about his personality that have changed. He doesn’t want to socialize at all anymore. He blames her for things she hasn’t done. These are all medical symptoms of dementia, she thinks. She begins to believe that the husband she knew is not there anymore. Everything he is and does is dementia. This man is a stranger, and her husband is gone. She stops doing things with him, socializing with him, and just focuses on his basic physical needs. Her husband begins to “resist” her care. He tries to push her away one day when she tries to give him a bath he said he did want. This supports her belief that this is not her husband anymore.
No description has explained to her that another way of looking at her husband’s actions (“symptoms”) is that he is likely frustrated, scared, angry, embarrassed, sad. That there are reasons behind his actions, including cognitive changes that cause him to experience things differently. That maybe it is not so much that he is no longer there, or the person he was is gone, but that he is adapting to his changes. Just like we all do. Maybe he is an evolving version of himself, like we all are.
What would their experience be like, how would it be different, if she did not read about personality changes being a symptom of dementia?
We need to be better in how we explain dementia. It is the words we use, and it is also the meaning they hold. We need to consider how to apply the paradigm shift of person-centered thinking to a definition of dementia.
Here are just a few ways we can do better in explaining dementia:
Consider what we mean by “symptoms” and the possibility of an alternate term.
Avoid pathologizing normal behaviors.
Differentiate between core cognitive challenges of dementia (such as challenges with memory, attention, executive function, etc.) and other experiences of dementia that could be reactions, adaptations, or have alternative explanations.
Describe the variability and individuality of a range of cognitive challenges, being clear that each person experiences dementia differently, depending on many different factors, including the cause of dementia.
Include the emotional component of living with dementia and what that might look like.
Use an experiential lens in defining dementia so that the definition includes not just what others observe in people with dementia, but what people with dementia themselves experience. For example, an experiential definition of dementia might include something like: “People living with dementia report feelings of frustration, embarrassment, sadness, anxiety, etc. as they cope and adjust. People around individuals with dementia might feel as if they are acting differently than they typically do. Each person with dementia is adapting in their own way to the challenges of dementia and we can support them to live well.”
A new way of explaining dementia would reflect that a person can experience cognitive challenges AND be whole.
So, what do we do? Our voices need to be heard. Question the descriptions of dementia that are out there. These explanations of dementia reflect the paradigm of dementia that exists – one in which we stigmatize, label, other, and pathologize people with dementia. This paradigm is not working. We need a new one. And it starts with a new way of de-scribing dementia.
I think we agree that nursing homes* need to change.
It seems that whenever I read something about nursing homes, and what we have learned from COVID, this message prevails.
I can’t stop thinking about all the people who right now are living and working in nursing homes. I cannot give up on them. They deserve better.
Yet. How do we move forward? How do we fix it?
We can agree that there are many elements of this system that are problematic. The reimbursement system is not built to adequately care for people with multiple chronic conditions. It definitely does not adequately care for people living with dementia. There is a serious workforce crisis, and that extends to the reality that we do not sufficiently pay direct care professionals. There is a regulatory system that is confusing and overwhelming to people, and paradoxically it is at times over-enforced and under-enforced. Some nursing homes get citations for leaving bananas out too long, and some homes that are actively neglecting and abusing people have minimal repercussions.
However, when we talk about fixing nursing homes, there are other problematic things that I hear less about. And they are related to the paradigms that surround nursing homes.
The paradigm in nursing homes that the best we can do is maintain people.
That people are too sick to have meaning and purpose.
It is not the job of nursing homes to create opportunities for meaning and purpose.
The paradigm that, for older people in nursing homes, well-being is really defined by the absence of things like hospitalization, pressure ulcers, “challenging behaviors” and not the presence of things like joy, meaning, etc.
There is the paradigm of safety at all costs, which is maybe partly driven by liability, but is likely also about our discomfort with older people making “bad decisions” even if it is want they want.
There is the paradigm in which the “experts”, professionals, and policy drive how the system looks and acts, not the people who are supported by the system.
There is the paradigm of feeling the pressure to only do those things for which there is an “evidence base” but also doing plenty of things for which there is no evidence base, sometimes at the expense for what might be helpful to an individual.
There is the paradigm of focusing more on keeping people alive, but less on how they are living.
So, as we keep having these important, necessary discussions about how nursing homes have to change, I plead that we keep some of these other problematic, more paradigm-y things in mind. No, more than that. Can we try to lead with a NEW paradigm? Truly build a system that is driven by a new paradigm.
Because fixing a system that keeps the old paradigm will not work.
Case in point, we have been trying to sneak a new paradigm, based on person-centered values, into the existing system for so many years now. But it has been hard to really grow this new paradigm in the current system. That is because it is not at the root of the system. If we want to fix nursing homes we need to go back to the root, and think about the foundation we need to build for a new paradigm.
What would this look like?
What if the foundation of nursing homes was a focus on LIVING, meaningful living?
What if the foundation of nursing homes was multi-dimensional well-being, especially emotional well-being?
What if the foundation of nursing homes truly included the voices of people who live in them? At every level.
Think about how nursing homes would look different if these foundational values were their purpose.
Let’s step back.
We might ask ourselves, what is the purpose of a nursing home?
Answers might be: to keep people safe, to treat their medical conditions, to do the things for them that they can no longer do for themselves.
These are not invalid answers. These answers have driven the creation of the system we see. But do they really answer this question of what is the purpose of a nursing home? As we are fixing the system can we envision a new purpose?
Couldn’t the purpose of a nursing home be to create a place where a person can LIVE their life, with the various supports they need to do that?
Couldn’t the purpose of a nursing home be a supportive communitythat is driven by what people CAN do, and want to do?
Couldn’t the purpose of a nursing home be a comforting place?
Couldn’t the purpose of a nursing home be to create a place where people can have every opportunity for well-being? Sort of like a one-stop shop for well-being. A well-being festival.
What else could be the purpose of a nursing home?
Okay, you might be saying to yourself, that’s nice, but how do we do these things and care for really sick people? We might start by not first thinking about nursing home residents as sick people, but people, who also have medical needs. They also have other needs. Some of those other needs might even be more important to them. We might also ask ourselves what people really need, even people with medical, physical, or cognitive challenges.
Maybe you are thinking, if we do not elevate the importance of medical needs, how can we trust that they will be met? How will we ensure that people are not neglected?
I am not suggesting that we do not do these things – provide safety and security, medical care, daily support. These things are necessary so that a person can live well. But they are not the driving purpose. And they are not the paradigm under which we make every decision for a person.
We have to think about the purpose of nursing homes, and the paradigm we want to adopt and apply, before we try to fix nursing homes.
Why is it important to think about paradigm before we fix? Here are some examples.
We talk about fixing the reimbursement system. But perhaps we need to first have clarity on what type of care and support the reimbursement system is financing. The reimbursement system would look different depending on the purpose of nursing homes. If nursing homes were driven by the need to ensure multi-dimensional well-being, including emotional well-being, the reimbursement system would look different than a system that seeks to only treat the medical conditions of people. What is the foundational paradigm upon which we create a new reimbursement system?
We talk about fixing the physical structures of nursing homes. Recently, infection control has become an important impetus for us to rethink how the physical environment of traditional nursing homes needs to change. From a medical, infection control perspective, smaller homes and private rooms are better for people living in nursing homes. Yet, there are other things we need to think about. If nursing homes are places where people can experience community, how would nursing homes look to encourage community? Would they be in commercial lots or in neighborhoods? If nursing homes are places where people can find opportunities for meaning, are they physically proximal to possible sources of meaning, whether it be nature, children, animals, the arts? If nursing homes are places where people with dementia can live autonomously, how do we design them so that people with dementia can walk freely within and outside them? What is the paradigm upon which we design nursing homes?
We talk about fixing the regulation system. But one might argue that the regulation system does exactly what is was intended to do. It enforces a system of care that is built on a paradigm of the primacy of medical care. What would a regulation system look like that ensures that people truly have well-being? That their emotional needs drive their daily lives just as much as their daily care needs. That their social needs are at least as important as their medical needs. What is the paradigm that needs to drive a new regulation system?
We talk about the high acuity of nursing home residents with the paradox that the current system does not adequately support them, and that this high level of acuity is also what prevents us from not having a medical model. Yet, we need to consider that these individuals would not necessarily fare worse in a system that puts their overall well-being ahead of just their medical needs, and facilitates for them a good life. They might even do better. What is the paradigm that needs to drive how we support people with multiple, chronic conditions in nursing homes?
How do we move forward to fix nursing homes? It seems that we agree on the problems. I am not sure if we agree about the problematic paradigms that drive nursing homes. Or, the new paradigm that we need to adopt and apply. I am not sure we have even really allowed ourselves to think deeply about a new paradigm, because we have been thinking so long about how we can’t do it in our current system.
What I am sure about is that it is time to think about the paradigm on which we will create a new system. The current system does not work. Fixing it without fixing the paradigm is not going to work either.
*Although I am mostly referring to “long-stay” nursing home levels of care, there are certainly challenges with “short-stay” or rehab. Also, although I am talking here about nursing homes, other types of care communities need to change too, like senior living.
In 2017 my second Being Heard blog was on interdependence. As I am reentering life after the pandemic, and on the heels of July 4th, I thought this a great opportunity to resurge with some thoughts on interdependence.
Happy Interdependence Day 2021! A celebration of our interconnection.
If the pandemic has taught me anything (and it has taught me a lot), it is that we need each other. We are interdependent. How could we have gotten through this without each other?
During COVID, it was interdependence that resulted in many, many health professionals holding the hands of people who were ill and dying without their families and friends present – so that they would not be alone.
It was interdependence that showed up in our bringing food to neighbors who were not able to leave their homes because they were at high risk for COVID.
It was interdependence that drove us to wear masks to protect each other.
Yet, we still cling to this idea that we need to be independent. This thinking contributes to us being disconnected from each other, and we do not see ourselves in each other. We lose our sense of shared humanity.
Has COVID not taught us about shared humanity, that we are interconnected and impact each other?
Maybe it is a good time to talk about interdependence. Maybe COVID has opened some wounds about independence and what it means to be interdependent.
I’m listening. And curious. Where does this overfocus on independence come from?
Our individualistic western society places heavy emphasis on independence in general. We operate under an illusion that everything we do is on our own, with no help from others, thank you very much. I don’t need nobody! To need others, to need help, is seen as weak. Then you are dependent on others, which is seen as very bad.
Yet. Independence is an illusion.
Yes, I said it. It is an illusion. It is a myth that our culture perpetuates. It lives there with the other mythical illusions, like perfectionism.
I am not truly independent. I am often dependent. These words I write are fueled by years of learning from others, from collaborations. This laptop on which I type – well, it is maintained through virus protection, VPN’s, backups, etc. by my “tech support” husband. As I walked with my dog this morning, engaged in training to teach him to control his need to say hello to every dog in the neighborhood, it is not I who came up with this training program. It is a fellow volunteer in the dog rescue in which I am involved. When I have been unwell, I rely on others to help me heal, to support me.
As we get older it seems that a focus on independence becomes even stronger. It seems to carry even more weight in our daily lives and our culture.
This illusion of independence as we grow older is further perpetuated by my beloved field of Gerontology. I love you Gerontology, but we need to take some responsibility for this one.
In the field of aging, “staying independent” is considered an “ideal”. It is woven through programs, research, policy, and practice as a driver of services and even as a desired outcome. It is a driver in that the purpose of X program is to “keep people independent”. As an outcome, X program is successful if X number of people “remain independent”. Underlying the ideas of “aging in place” and “successful aging” is the notion of independence. We send the message to older people all the time that to be independent is the best they can be and something to strive for (as if it is something that is entirely under our control).
Understandably, Gerontology likely focused on independence as a major goal because it wanted to dispel the idea that older people are dependent – defined as sick, frail, not contributing to society. But perhaps this current focus on independence is an overcorrection that we need to revisit.
What does it really mean to be independent anyway?
It is actually unclear. Although it is variably defined, it generally is thought to be a person who lives in his/her own home, with little or no formal support. In some cases it might simply be a person who does not need assisted living or a nursing home. In nursing homes and assisted living, we might use that term to describe someone who needs little or no support in a particular daily activity, like dressing, So, according to this definition of independence, a person living in a nursing home who volunteers to read to children, but needs help dressing, is not “independent”. A person living with dementia who relies on a transportation service to get to her church, but cannot drive on her own, might not be considered “independent”.
The underlying message is that to be “independent”, requiring less or no support from others, is good.
We need to consider not putting independence on a pedestal. Why?
First, why should independence be the primary goal of aging/living? What about well-being? Happiness? Joy? Meaning??!!!
Second, when we perpetuate the idea of independence as the ideal, it contributes to othering. “Those people” are not independent – they are DE-pendent. They clearly did something wrong! I don’t want to be like those people. Relatedly, this allows for people to feel as if not meeting the false ideal of independence means they are failing. They are failing at aging or life. (Not true.)
Third, if we feel social pressure that we have to be independent, that this is the measure of our success, we might not seek out supports that could facilitate us reaching these other goals, like well-being, joy, and meaning. We might feel shame in asking for help. We might deny that we need help. By not getting support, we might actually contribute to our own disabilities. We might disable ourselves, rather than enable ourselves.
How do we move from independence to interdependence?
Perhaps we need to unpack some things.
First, we might unpack what independence means for us, so that we can determine what elements of independence need to be better understood. Maybe there are elements of how we define independence that we need to uphold.
One example is privacy. If to be independent means to have privacy, people have a right to privacy, regardless of what supports they might need. We need to value privacy.
If to be independent means to exercise one’s autonomy, including not having people make decisions for you, we need to learn how to better navigate autonomy, and how to be with people in partnership that supports what is important to them as well as health, safety, etc. (More on this in an upcoming blog!)
We might also unpack what it means to be dependent. There are such negative connotations with being dependent on others or other things, especially as we get older. What are our fears related to dependency? I have heard people say that they don’t want to lose themselves. That they don’t want to lose control over their own lives. How can we see each other, not for what we need or don’t need, but for who we are as human beings? How can we ensure people have control? How can we help each other see that dependence is not just loss – it is also gain? Through dependence on another person or another thing, we might gain the ability to do something, even if if looks different than it did before. That’s perseverance.
Of course, we need to unpack interdependence. What does it look like? How do we practice it?
Interdependence has been broadly defined as being based on “the premise that in reality human relationships are based on mutual dependence, exchange, and partnership.” This is a beautiful idea, but maybe not super clear or simple to practice. Perhaps we need to define interdependence more clearly. For me, to better understand interdependence it is helpful to consider what interdependence is and what it is not. Let’s start with what it is not, from my perspective.
What Interdependence IsNot
Interdependence does not mean that you entirely give up what you want because you need something from another person. A central component of interdependence has to be knowing what is important to each of us, sharing this with others, and collaborating so that this is honored to the best degree possible.
Interdependence does not mean being purely dependent on another. We are mutually dependent. The nature of that balance changes, as it does throughout life. The nature of interdependence is such that our needs and wants are known and honored. Being purely dependent on another would mean that our own desires are not considered. This would not be interdependent.
Interdependence does not mean that we give up independence. To be independent means that we have needs and wants. Our human rights are upheld in interdependence, which includes rights to privacy, self-direction, well-being, meaning, joy…..
Interdependence also does not mean that we continually deny others the opportunity to help us. Interdependence is not independence with just more letters in the word. Interdependence means considering that being there for each other and supporting each other is a gift to each other, for both those who give and receive.
Interdependence is not always “balanced”. There are times when we need more than others. There might even be times when what we can give someone else is very little, and what a person can get from another feels small.
Interdependence does not mean we support each other in the most perfect way with no compromise in how we support each other. It isn’t perfect.
Interdependence is not just about doing things for each other. It is being there for each other.
So, what is interdependence? What might some “key ingredients” to interdependence be?
What Interdependence Is
A key part of interdependence is autonomy. For all parties involved. That might seem counterintuitive to a person who sees interdependence as losing autonomy, but autonomy is central to interdependence because we all have needs and wants. One person might have a need for support and the other person might want or need to offer that support. We need to be willing to share with each other and listen to each other. That means that we have to know each other and trust each other.
Which brings me to another key part of interdependence – trust.
When we are dependent on each other, when we seek support from others, and give support, we have to have trust in each other. This looks like:
I trust that you will share with me what you need, and what is important to you.
I ask that you will trust me to let you know what I can and cannot do. How I can support you and how I cannot support you.
I trust that you will honor my perspective, and you trust that I will honor yours.
Perhaps other key parts of interdependence, which we need to devote more attention to, are humility, openness, and adaptation. Giving or receiving help to each other is never perfect. We don’t always exactly get the type of help we want or need, and we don’t always give it in the most perfect way. So, perhaps we also have to approach interdependence with a sense of kindness and empathy for each other. Just like we need each other, we are also doing the best we can, and we try to do better.
Living in the spirit of interdependence might change the nature of our conversations as we grow older or grow with dementia. Maybe we can find other ways to approach difficult conversations about supports a person might need, that are less driven by the need to “manage” people, and more driven by mutual needs and perspective-sharing.
With all this said we still struggle with how to practice interdependence in reality, how to truly support each other as we change and grow throughout life. There are realities that a person with dementia might have difficulty making decisions and might be dependent on another person helping them make decisions, or making decisions on their behalf. In these spaces, how do we continue to be interdependent when the balance shifts so that we are taking more of a role in supporting a person? How do we practice interdependence when a person’s choices are compromising their health or safety? How does interdependence look when a person needs a high level of care and the person providing support feels that they are no longer receiving anything from that person?
It is in these gray areas that we need to consider how to live interdependently.
Interdependence is not all rainbows and butterflies. In many ways, it requires us to be acknowledge our universal human vulnerabilities, that we are all imperfect, that we all get sick, and that we all will die. Definitely not rainbows and butterflies.
There is value in this acceptance of vulnerability. We recognize that it not just other people who get sick, who get dementia, who need support, but it is I.
We need to be open to the possibility that we might need help or support. That we might have dementia or illness. That accepting support from someone might enable us to do the things we want to do and live the life we want. It helps us to think about difficult questions like how do I move to a place of acceptance in which I might consider that a walker can help me to continue to do the things I might like to do, like going to a concert?
Although independence might be held up as an ideal or goal by many, we need to consider that it might actually be unrealistic, unproductive, or even detrimental to our well-being. To not accept support, in name of being independent, could have negative consequences, like keeping me from living the way I want. Fierce independence can even be disabling. Interdependence, including support from others or adaptive devices, can be enabling.
Perhaps independence is held up as an ideal because we don’t have a better ideal for which people can strive as they get older. Like a meaningful life. Perhaps interdependence is not seriously considered because we feel there are few opportunities for us to practice reciprocity as we grow older. Perhaps we feel that no one wants to take what we have to give. Perhaps a new paradigm of growing older could include interdependence as an ideal. And if practicing interdependence might help us achieve a meaningful life, would we more likely accept it?
Ageism is a constant undercurrent in our society. Ageism is essentially defining a person, and making assumptions about them, entirely based on their age.
Yet, we cannot deny age. It is a part of a person. Age, which might simply be seen as the passage of time, does make a difference to a person. One might even say that it significantly impacts a person.
Hence, a paradox!
There are many paradoxes in aging.
The Covid-19 experience brings to the surface not just ageism, but these paradoxes about aging. It uncovers many of our tensions in how we see and think about older people. As they are exposed, it seems like a good time to pay attention to them. These paradoxes help us think about the paradigm of aging we want to promote, which is the antidote to ageism.
One of these tensions is in the idea of chronological age.
Chronological age, in itself, has limited meaning. It says that a person has lived a particular number of years. It does not define a person, and it certainly does not explain who an individual is.
On the other hand, chronological age does say something. It says that a person has lived X number of years. It says a person has life experience.
If you think of the meaning of chronological age throughout the life span, this holds true for any age. A teenager has lived a particular number of years. It does not define them. But it is an important part of who they are.
There is something particularly special about living for a long time. In fact, there is a lot of data that suggests that as a person ages (grows), they gain all sorts of things that are associated with lifelong growth. For example, the possibility of wisdom.
There is evidence that a person’s emotional well-being might improve with the passage of years. That through living, a person develops adaptive strategies and tools, develops meaningful relationships, does better at emotional regulation, etc.
Aging means something. The experience of growing older means something.
So, the first paradox is:
We cannot define an individual entirely based on his or her chronological age. We do not want to make assumptions about a person based on their age.
Age is a part of who a person is. Chronological age means something.
The Covid-19 experience has also caused us to consider older people as a group. And there is a tension here.
Are older people, as a group or stage of life, unique in some way? In other words, should/might people have their own ‘hood as they acquire life experience through years? As in elderhood? Older adulthood?
If this stage or group is special, do we need to have a level of reverence for individuals who belong to this group?
A clear downside of this is seeing a group of people as all the same, or making universal assumptions about individuals in a group because of their belonging to this group.
Another downside could be othering – thinking that older people are “them”. We would need to recognize that people in elderhood are “us”. Maybe just not yet.
Yet, there is potential to see older adulthood as important in our society. Something to be celebrated, just like we celebrate other life milestones such as adolescence.
Sometimes I hear suggestions that we should not associate older adulthood with being something unique at all. Some people do not want to consider themselves as being in older adulthood or elderhood. It is understandable, for many reasons. And, it worries me a little.
Are we saying that we should see older people as people at midlife who have just lived longer? Eternal midlifers? If older adulthood was not a thing, you could just stay in adulthood. But then there might be no reverence for growing older, because it would not be considered a special ‘hood.
What does it mean to think of older people as a group? As a status?
I think this tension in seeing older people as a group that is separate/not separate particularly arose when initial guidance on the virus was directed towards people 65+. There were concerns about this resulting in negative perceptions/treatment of older people as a group (because it had less focus on the individuals within this group). There were valid concerns about ageism and paternalism. While there was unfortunately talk of essentially “sacrificing” older people to the virus, I also heard a genuine concern for older members of our communities
When people were initially thinking this virus primarily affected older people, I heard younger people say things like, “I am doing my part so my mom/dad/grandparent is safe”. I heard stories of family members going out to the grocery store for all older members of their families, concerned that they should not be exposed.
There is something beautiful in this. Caring across generations. A reverence for elders.
The second paradox is:
People in older adulthood/elderhood should not necessarily be treated differently as a group – we cannot make blanket assumptions about them as a group, or treat them unilaterally because of their belonging to this status. Each person within this group is unique, and maybe we shouldn’t even see them as a group.
People who have achieved older adulthood/elderhood have achieved a special status that deserves reverence – they might be seen as belonging to, and having value as a group in our society. So, we might treat them differently?
A third tension that is being brought to the surface is our intense discomfort with vulnerability.
It might be useful to consider what is meant by vulnerability in gerontology. There is a “lack of consensus” in how vulnerability is defined but, in the context in which we are hearing it, it broadly means an increased risk for negative consequences.
So, it is not incorrect to say that there is vulnerability in growing older, based on this definition. It would be incorrect to say that every person has the same level of vulnerability. For example, in a two-week snapshot, 79% of deaths from Covid-19 were people 65+. By this definition, older people might be considered vulnerable. Yet, not all individuals 65+ are at higher risk, especially when compared to individuals of any age with serious health conditions. I do understand, from a public health perspective, why the guidance was given to particularly “protect” “vulnerable” people age 65+. I also understand the concern about public health decisions based entirely on age. This is an important conversation. And it made me curious about how we feel about vulnerability.
Growing older does not equal vulnerable or frail. Each person is unique. Every person has their own health “profile” and many older people are what we would consider physically healthy.
And, with aging comes increased risks for physical and cognitive challenges – vulnerabilities. There are people who are older who are ill. People who have various types of disabilities. This varies with many individual factors.
I get concerned when we try too hard to entirely separate physical or cognitive challenges from growing older. When we attempt to minimize the possibility of vulnerability, and even portray it as something “bad”, we risk portraying these individuals as “bad” – as not aging well like the rest of us! We might then send the message that there is really only one way in which we need to see older people, and that way is as healthy, vital people.
By portraying vulnerability as “bad aging”, we also make the possibility of illness and disability scarier.
We seem so uncomfortable with the idea that vulnerability is also a part of the experience of growing older that we sometimes go to the other extreme of overemphasizing vitality.
Why are these mutually exclusive? A person can both be ill and vital. A person can have dementia and be active. A person can be medically vulnerable, perhaps needing more of the support of others, AND be able/willing to give as well as receive. These are false categories.
I think if we dig underneath, and get to the root, we will see that we are just intensely uncomfortable with the idea of vulnerability.
We have been upset at being considered “vulnerable” when we are lumped into the 65+ guidance with Covid-19, regardless of our health status.
Now, I am not saying that it is not justified to be upset. There is a lot of putting people in boxes going on here.
But, WHY are we so upset about being considered vulnerable? Is that so wrong to be a person that is vulnerable?
Is it the label? What about the people who would be considered “vulnerable” – people with multiple health conditions, people living in nursing homes, etc.? If we are feeling uncomfortable about being called vulnerable, imagine how those might feel who are labeled “vulnerable”. I am sure it does not feel good.
I don’t know that the answer is to deny vulnerability. It might be to accept it. Not as a function of growing older, but as a part of the overall human experience.
So, the third paradox is:
We cannot equate aging with vulnerability – each person experiences health differently.
Vulnerability is a part of life, and with age comes an increased risk for negative health experiences and outcomes, at least in some aspects of health.
And then, I wonder.
I don’t think that our conversation about the experience of growing older should primarily be about what it isn’t, because that then leads us to define what growing older is. I don’t think we can define that for anybody. I worry that by focusing our conversations on what is not common or “normal” for most older people, we are still limiting what we think an older person “should be”. An older person can be ill, can be well, can have dementia, cannot have dementia, and yet this is not the essence of what growing older is.
I believe we need to promote a multi-dimensional view of the experience of growing older, which at its core means that each one of us is an individual, that as we go through life we grow, and this experience of growing older is never one thing, lest of which is age.
What all of these paradoxes point to is the truth- that each person is a unique individual throughout life, so this does not change with age. Perhaps we need to consider deeply what it does mean to grow older. Perhaps we can develop a comfort level that growing older is a part of life, perhaps a very special part of life, and maybe even something that we should honor. We might honor it not because a person is healthy or not healthy or wise or not wise but simply because it is this experience of the passage of time that is special and might result in us growing.
What would it look like to see a person as a multi-dimensional individual, and age is a part of this?
Can we reconcile the paradox that each individual is unique, at every age, and more than their age, and also honor that there is something special about the experience of growing older?
We are hearing beautiful, tragic, heartfelt, desperate stories from people working in nursing homes. People who are stepping up in ways that we cannot imagine. I know these people. They are giving everything they have.
The people working in nursing homes do not need blame right now.
They do need supplies, encouragement, and love.
AND, nursing homes need to change.
They need to change from institutions to communities. They need to not be seen as “warehouses of the old”, but places where people get the support they need to live their lives well. Places where people who work there are supported and respected.
The Covid-19 crisis uncovers problems that have been there – ageism, staffing shortages, under-staffing, turnover, broken systems that do not serve the people using them, and overall feelings of lack of support, whether it be from within organizations or outside them – reimbursement systems, survey processes, and the healthcare system-at-large.
There are many nursing homes who struggle every day to just get through the day.
I think most people would agree that there needs to be another way.
There has been much debate over the years about how to do this. Culture change is the way to do this.
Culture change is the term given for the deep transformation of care communities from institutional, medically-driven cultures to ones that are person-centered. The Covid-19 virus offers an opportunity to think about where culture change will go from here.
This crisis points to the value of, and need for, culture change, and what we learn from this crisis can further help us transform care communities into better places to live and work. This crisis can present us with an opportunity to promote continued change. To maybe even build something new.
So, what CAN we learn from this crisis that will help us to keep culture change alive? Can we use these experiences to grow the culture change movement?
In fact, many people have been practicing person-centeredness throughout this crisis. When guidance came to care communities to restrict visitors, group activities, and communal dining, what happened? There was an unbelievable response to find creative and alternative ways to connect with people living in nursing homes, and to remind them that they were seen. There was widespread, and almost instantaneous recognition, that people living in care communities were already at risk for social disconnection, and that this pandemic dangerously heightened this risk. I was so touched by the many people who wanted to be a light for people living in care communities.
Throughout this crisis, care communities have been living person-centered values. We can do this. We can change the culture of long-term care.
Karen Stobbe, Chief Purpose Officer of In the Moment, recently said to me, “I think we are learning that we can do change. I looked over at my passenger seat today, at the hand sanitizer, the mask, and it hit me how much we all have had to make changes. We CAN do change. Nursing homes and assisted living communities can change. They have during this crisis. They have adapted. They had to. They even had to do this in situations where there are limited or no resources. Maybe we can use this experience to see that change is possible, and we have what we need to make other changes. Maybe if leaders look to the future, knowing that they have to make changes, because it benefits everyone, and they know they CAN do it, this will help them. Their teams have been doing it throughout this crisis.”
Yes!! We CAN change. Here are some areas where we might gather lessons from this crisis as fuel for change.
I will try to connect some of the lessons we are already learning with foundational principles of culture change, developed by the Pioneer Network.
Each person can and does make a difference.
One of the principles of culture change is a fundamental recognition that all human beings deserve choice, dignity, respect, and meaning. This is for both people living and working in care communities.
Culture change reminds us that the people who care for individuals living in care communities are THE cornerstone of that care. So, there must be enough people to care for those living in care communities. They must be respected. They must be paid sufficiently. They must be given the tools they need to do their jobs well. These are individuals who show up every day to do important work and we need to treat them this way.
I have an optimistic view that this crisis is helping to elevate the extreme importance of people working in healthcare and long-term care. Healthcare and long-term care heroes are inspiring people all over the world, and perhaps this inspiration will lead to people wanting to join these fields. How can we tap into this inspiration to recruit people to work in care communities, and to keep the amazing people we already have?
Community is the antidote to institutionalization.
Perhaps one of the greatest lessons we are learning from this pandemic is our need for social connection and community. Perhaps we can ask ourselves, what does it mean to build real community in care communities?
Communities are foundational to authentic living. And, communities are created through authentic living and relationships, when we come together in real ways to support each other as humans. Like we are doing now. So, we are learning more about what it means to be communities and not institutions. How has this pandemic shown us how we have community in care communities? What are we learning about where community is lacking and how we can make it stronger?
Caring for the spirit is as equally important as caring for the body.
Despite the medical emphasis that is needed to address COVD-19, we are also caring for the spirit in care communities. We are living the deep knowledge that a person’s emotional and spiritual needs are just as, if not more important, than physical needs. What can we learn from this crisis about how we can better balance these needs?Promote the growth and development of all.
As we continue to seek ways to create community and connections with people living in care communities, we might also consider how these individuals can be active participants in giving back to the community. All people have a need for purpose, for reciprocation, and I imagine people living in nursing homes will welcome the opportunity to help us heal, reconnect, and recover.
These are just some of the areas that need to be examined and where we need to keep doing better. And I believe we can.Yes, there are many challenges. These challenges have been there. The same challenges might keep us from changing. Not enough money. Not enough time. But care communities are exhibiting their ability to make the best of what they have, to dig deep. We can use this energy to transform. Perhaps this will create awareness of the need for better financial support for long-term care communities and those who work closest to the people who live in them.
It is important that we do not lose this momentum, and place too much emphasis on the need for money to move us forward. Care communities have been transforming their culture for many years now, and have demonstrated their ability to change, so change is possible despite an influx of money. Additional financial support, especially to pay direct care team members increased wages, would certainly help. But change is not entirely dependent on this. After all, it is still possible for a home that has a lot of money to be very institutional. And giving more money to an institution might just grow the institution, unless there is desire and commitment to change. So, it is bigger than dollars.
Maybe this crisis will help us think creatively about how we ensure that a person-centered culture is the norm, and that it is the driver of operations, not a sidebar.
Can we use this crisis as an opportunity to look deeply within ourselves and see what we have done well, and where we can do better, for both the people who live and work in our communities?
I do see opportunity in all of this. The missed opportunity would be to move forward without envisioning something different.
I think we have to recognize a few truths at the same time.Nursing homes need support, not blame.
The people who work in nursing homes are a part of a system that is not working for them.
The relatively small number of nursing homes who are really “poor performing” do not represent all nursing homes. And, they need support too.
Allnursing homes need to change, or continue changing, from institutions to communities.
There is a relatively small number of nursing homes who have been on the journey of deeply transforming their culture. These homes serve an important role as we move forward.
They demonstrate it is possible.
They can serve as mentors and leaders to others.
As they continue on their journeys of change, they can share these journeys, so that we can all develop comfort and acceptance that change is ongoing and never perfect.
There is also an opportunity to widen our lens from a primary focus on culture change in nursing homes. Culture change needs to happen across the entire system of supports and services for people who are growing older, growing with dementia, and those who support them – this includes all of senior living and home-and community-based services. Another lesson of this crisis is that which we already know – the system is fragmented and silo-ed, and we are better together.
I believe in the people in nursing homes and I believe that nursing homes themselves, as systems, have to change. Nursing homes are not adequate for what we need. They do not allow for everything that they could be, for both people who live and work in them.
I believe in nursing homes and the people who work in them. I know that they have what they need to transform culture. They are showing us this right now.
So, let’s do this – let’s change from institutions to communities, to places that live out person-centered values at every level. This is all possible. We know now that anything is possible.
People are living in nursing homes are working so hard. We owe it to them to create something better. Let’s build something new together. Culture change can help show us the way.
I have to admit. This Revisionary Gerontologist hasn’t had the words to talk about this pandemic and this crisis. To be honest, it has almost felt wrong to share my meager reflections when people are dying and in pain.
Yes. And. I was finding that the lack of words was becoming agitation. In my experience, behind agitation are feelings. Usually, these are feelings that need to be expressed in some way.
I don’t know about you, but I feel many things right now, because I see so many people suffering in so many different ways. And it is very close to home. I see how this pandemic is especially impacting older people in our communities, at every level. I see how nursing homes and other care communities are struggling, with limited or no resources. Yet, the people working in care communities show up every day. And they keep caring for our neighbors, our parents, our siblings, our friends.
“These are my people!” I want to shout.
“They need help!” I want to scream.
How do we help them? I say to myself.
I hope we care about them? I whisper in especially low moments.
I might not have adequate words for what is happening right now. I know they will come eventually. But I do have feelings about it. Maybe you do too.
I say these things from the comforts of my home, where I quarantine with my husband.
So, I have guilt.
Guilt about all these amazing people out there caring for people living in care communities. I used to be one of them, and I am not now. I have guilt that I have not been able to make things better for them, after all these years of trying to change the culture of long-term care and how we see and support those who live and work in this culture.
So, I feel helplessness. What can I do? Is there anything to do? Who do I call? What would help?
I feel anger. It is not placed at anyone in particular. Just anger. Because nursing homes and care communities are a part of our community. They are not separate from us. They are us. We need to care about them. We need to care about what happens in them. We need to hear their voices. Is a lack of attention to care communities in this pandemic the ultimate display of our pervasive ageism?
So, then, there is sadness. Sadness for the pain in care communities, for both people who live and work there. Sadness for the families of people living in care communities.
And it is more than care communities, of course. The families caring for individuals who are living with dementia in their own homes. People living with dementia, who might not have access to the details of what is happening, but feel the anxiety and sadness around them. I feel guilt, helplessness, anger, and sadness here too.
I feel this and I also feel….
Love, gratitude, and awe. For the incredible work people are doing, in care communities, in hospitals, and in our own worlds and lives.
And I feel hope. I really do. I am hopeful that we will continue to think about, and be curious about, what is happening. These experiences present new reasons to explore our feelings about vulnerability and aging, and to ask ourselves how we balance the care of the body with the care of the spirit. I am hopeful that we will take these opportunities to explore the connections between our paradigm of aging (which we need to change), and how this has manifested into the systems and supports we have. To give words to this. Maybe even a revolution.
There is hope in how we might take actions, now and moving forward.
Now, we might share ideas on how to support our communities, which include care communities. Maybe we can find out what care communities need and how we can help get it to them. Maybe we can call our elected leaders and our government agencies, and ask them to make sure they are supporting care communities, both those who live and work in them. We can demand that care communities receive the support they need. That they matter.
It is also okay to sit with our feelings, to take care of ourselves, and to heal. It is okay to be rather than do. We need to rest for what is ahead.
There is hope in how we move forward. These experiences are providing us with precious opportunities to consider how we will build generationally-inclusive communities, how we will address pervasive social disconnection, how we will transform care communities into better places to live and work, how we will actively include the voices of elders, and how we will change the paradigm of growing older and growing with dementia. This is the work we have ahead of us. Let’s do what we need to get ready.