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.
Many of you know that Blue the Elder Dog died last September. He was the most special dog.
I believe that Blue returns to me, periodically and intentionally, in the form of a Monarch Butterfly.
It’s okay. Take pause. I will explain.
The first time was shortly after Blue died, maybe the next day. I was sitting outside in our screened porch area. I was numb and processing what had just happened. A Monarch Butterfly flitted around the outside of the screen, sort of frantically trying to get inside with me. Then he rested on a bush. I watched him.
I thought to myself that I had never seen that butterfly here before. The thought of Blue crossed my mind but I shook it away. It felt like him. But how could Blue be a butterfly? Silly!The second time was several weeks later. I was on a run. My running path goes past this house that has a German Shepherd in its backyard. The fence follows the path, so as I run along it, the German Shepherd likes to run with me. Actually, he races back and forth along the edges of the fence and barks and growls at me in a threatening way. Every time. This makes me a bit nervous.
My heart rate rose as I ran past.
And then, the Monarch Butterfly (Blue) came out of nowhere and started circling me. He flew around me for several seconds until I felt myself calm. And then he flew away. Blue was always very protective of me, all 20 pounds of him. He was my running buddy for 12 years. On our runs, there was no dog, child, runner, or moving object that would escape his notice, and be acknowledged with an adorable fierce warning bark.
As I was walking back home after my run, I passed a grassy area where we used to walk with Blue frequently. And there he was. The Monarch Butterfly ran through the field, frolicking up and down. And I had to stop and watch him. He was pure bliss.There have been countless examples of Blue the Butterfly, moments in which I’ve been thinking about Blue, or talking about Blue, or just needed Blue, and the Monarch Butterfly has visited.
It is understandable that one might think this coincidental. But I don’t believe it is.
The most recent experience just happened about ten minutes ago. This is what made me realize I had to share this today.
I was walking to a coffee shop, where I often work to escape the distractions of my home office. As I am walking along a very busy street, cars honking, my brain travels to the upcoming Memorial Day weekend. I am excited for it. I am thinking how nice it would be if we were close to a beach, just for a day trip. Oh, I remember that beach we went to last year, on Labor Day weekend – it wasn’t too far away.
We went to that beach the day after Blue died, to escape our sadness. It didn’t work. That was Labor Day weekend. I think of him and am overcome with his loss.
I marvel at how grief appears, willfully and randomly. I indulge myself in a brief fantasy in which a stranger pulls up beside me in a car and hands me a puppy Australian Shepherd, begging me to take it home. What choice would I have?
And then, it happens.
A Monarch Butterfly (Blue) flies in front of me, weaving back and forth before me as I walk along. He dives into my face, and then pulls back, running away happily. It is the first one I have seen this year. I gasp out loud. (Okay, I might have said an expletive out loud.)
I am shocked into attention. I see that it is the most perfect Spring day.I write this knowing that some of you will think I’m a weirdo. That is okay. Of course I am! I am not afraid of being weird.
You might also wonder what this has to do with being a Revisionary Gerontologist. I don’t have a straight answer, but I just know it does.
Maybe it’s because this has to do with living and dying.
Maybe it’s because this is about grief and loss and all the things we don’t want to talk about.
Maybe because this is about paying attention.
One of the many things that Blue taught me, and continues to teach me, is about paying attention. Paying attention to what’s around us. Stopping and paying attention to what’s inside of us. Stopping and paying attention to those around us, what they’re trying to tell us, with or without words.
It is a reminder to me to pay attention to the miracles around me. They are around us all the time and we (including myself) don’t always see them.
Sometimes I think we don’t see the miracles because we don’t think it is okay to do so.
Is it “okay” to believe that a Monarch butterfly is your reincarnated dog? (Weirdo!)
The hyper-cognitive part of us tells us we are wrong. It is not possible for a butterfly to be a former dog. (Your brain is playing tricks on you!)
We don’t let ourselves pay attention. Our culture of hyper-busyness tells us we don’t have time. (Get back to work! Who has time for chasing butterflies!? And thinking!)
So, we stop paying attention.
Please don’t stop paying attention. And really SEEING.
SEEING the miracle of nature, of beauty, of kindness. Of things that don’t make sense.
SEEING the people around us as human beings, and as miracles.
SEEING the person who is presumably homeless. The elder at the grocery store, slowly writing a check, while people impatiently stare at her. The person living with dementia who does not have the right words, but deep thoughts and feelings. Your neighbor. Your co-worker. Your family member.
SEEING the butterfly that could be a reincarnated dog.Note: I was supposed to be working on the Being Heard series on ageism that I am writing. Alas, I had to pay attention to a butterfly/dog. Pardon the delay and stay tuned for a series of articles on the opposite of ageism.
As a change agent, promoting a different culture of aging and different ways to support each other as we grow older or grow with dementia, I have struggled with how to do this – how do we promote change? A wise mentor said to me that sometimes the best place to start is with yourself. To share your perspective through your story.
He asked, How did you change?
It is critical that this story is an authentic one, he stressed. In particular, it has to include the mistakes you made, and humility, in assuring each other that we will continue to make more mistakes. And that hopefully, as they become a part of our stories, we learn and grow from our mistakes.
So, let’s settle in for the story of how and why I became a revisionist gerontologist.
Once upon a time I became a gerontologist. This “title” of gerontologist refers to a person who has an advanced degree in gerontology or aging studies. But what made me a revisionist gerontologist was something else. It was a paradigm shift.
Per the definition of revisionist:
A revisionist is “an advocate of revision; a reviser; any advocate of doctrines, theories, or practices that depart from established authority or doctrine.”
As a revisionist gerontologist I believe we need to change the paradigm of aging and dementia.
It is important for us all to realize that paradigm shifts are made, not born. I was not born a revisionist gerontologist. I grew into one.
How were the seeds planted?
I am a proud gerontologist. The academic field of gerontology gave me my title, and an important framework for me to think about growing older or growing with dementia. But the academic framework of gerontology is not the basis of my knowledge about aging and dementia. The basis of my knowledge about aging is from human experience.
Everything I know really grew from elders and people living with dementia who have sat with me and shared their stories.
So, yes, I have a degree in gerontology, but my knowledge is really from many years of having the honor of listening to elders – elders from all sorts of places – about their lives, their concerns, their wisdom, their joys. They are truly what has made me a gerontologist, and a revisionist one at that.
Don’t get me wrong. The academic study has been vital to my development. What it particularly gave me was a lens through which to be continually curious about aging, and to always question what we think we know. This is in the spirit of “critical gerontology”, which is really a thing.
Critical gerontology helped my paradigm shift grow. It helped me see that perhaps there were some cracks in the field of gerontology. And that even within a field that is so well-intentioned, and so new, there is a need for gerontologists to continually be open to newer possibilities, and to create a culture of learning.
Really, to listen more. To pay attention.
I needed to listen more, with elders, with people with dementia, and with those who care for both.
So, I listened. I paid attention. I learned and grew from listening, and sometimes, not listening. And I saw some more cracks.
You see, the things I was hearing and seeing in being with elders and people living with dementia were raising questions to me. About how we saw older people and people with dementia, and how this paradigm of aging and dementia was being operationalized into systems that were not created from or with elders and people living with dementia, but for them.
By well-meaning professionals like myself.
I had been working in nursing homes and assisted living communities and I was very unsettled by what I was experiencing. They were so institutional, and there was very little focus on people as individuals.
I found myself blindly doing what everyone else was doing because that was the way it was done. I found myself becoming institutionalized.
I thought I could do better. I thought we could do better. Yet, I felt powerless and overwhelmed with changing “the system”. So, I left long-term care.
I started working with people in their earlier experiences of dementia, what we have traditionally called “early stage”. I facilitated education and support groups for them and their care partners. As I really listened to what people were experiencing, and saw things from their perspective, I realized that, although it had been well-intentioned, I had been approaching people with dementia often from my perspective.
The more I listened to and spoke with people with dementia, learning what it was like to have dementia, including their fears, their struggles, and their hopes, the more I realized how much we really did not SEE people with dementia as whole human beings. We saw them as their dementia.
For years I sat and listened to individuals living with dementia as they shared their world with me. And my world changed.
I remember preparing for a presentation to a group of people living with dementia on the symptoms of dementia, and I realized that the way we had always talked about dementia, to professional and family caregivers, did not include the voices of people living with dementia. When I thought about the language we had used to describe people with dementia – regular, normal people with whom I had been sitting and listening – I realized that I had to find another way to think and talk about this.
I could not talk to a group of people with dementia, describing the seven stages of the global deterioration scale to them, and explain how they are measured as humans on this scale – based only on their weaknesses and judged only by their medical diagnosis. I had listened and learned from their perspectives – that these “stages” denied them being able to think about themselves as individuals, and it caused us to not think of them as individuals.
Sitting with people living with dementia, and learning who they were as human beings, as well as how they were living with dementia – struggling with it, and even living well with it – this was the greatest gift to my career as a gerontologist. It changed everything for me.
These experiences with people living with dementia taught me an important lesson, and a lesson that I had not really learned from my gerontology classes or textbooks. To SEE people.
People living with dementia sharing their lives with me was my gateway to being a revisionist gerontologist.
It opened the gates. I found my tribe in Pioneer Network. I learned about culture change and person-centered care. I saw there were other ways to support each other as we grow older.
I became increasingly aware of needing to change the way we see each other as we grow older and grow with dementia, and that this starts with SEEING people as multidimensional individuals.
Being a revisionary gerontologist does not mean I have the answers. To me, being a revisionary gerontologist is, in many ways, about embracing imperfection, but challenging myself and others to do better for elders and people living with dementia. I am a work in progress. We are a work in progress.
Why am I sharing my story? We all have a story. There is a journey in each of us as we change the culture of how we see each other as we grow older or grow with dementia. Paradigm shifts are made, not born. And they live in our stories. What is your story?
I am reading Mary Pipher’s book, Women Rowing North: Navigating Life’s Currents and Flourishing as We Age. She says,
“For many of us, a combination of suffering and happiness is what defines this life stage and fuels our growth – we can describe ourselves as living in both/and terms.”
I so love that.
Last week in my Psychology of Aging class we had a spirited discussion on this very topic. A student brought up her frustration that when she hears discussions about abolishing ageism, she notices that there seems to be a need to hyper-promote the idea that “aging is positive”. She said what she doesn’t hear in these discussions is a “more balanced, holistic” view of aging. She laments that she feels like it is selling a version of growing older that is not authentic, at least not for everyone. She gets that there are gifts and wisdom, and all that jazz, she says. But that is not all what aging is.
It is both/and.
As I am engaged in this discussion, I think about another conversation I have heard lately that reflects this struggle with both/and.
I read a social media comment in which the author expressed frustration with intergenerational programs in which children visit people in nursing homes. Her point was that this resulted in children having a poor image of growing older, perhaps even contributing to stereotyping older people, i.e. ageism. She suggested that children should be exposed to other examples of growing older, not “frail” people in nursing homes.
Certainly, children should be with all sorts of older people. And not just children, by the way. It is important that people of all ages see that there is no single story to the experience of growing older.
Yet, I couldn’t stop thinking about the message that is behind this. That living in a nursing home or living with dementia = bad aging/negative aging/failing. That these individuals somehow should not have a place in the story we tell about the experience of growing older.
I worry about this.
This comment reflects the story of living in a nursing home or living with dementia as primarily a story of loss, negativity, decline. Why is that the story? It does not need to be. One can live in a nursing home or live with dementia and have a story of growth too.
It is both/and.
The reason we promote positive aspects of growing older is to balance the prevailing negative perceptions of it. These negative perceptions are at the root of ageism, and develop into stereotypes that are generalized to older people, and result in us not seeing people who are growing older for their whole, individual selves. One way we have tried to eradicate ageism is to try to paint a different picture of growing older. This might be older people who are running marathons, practicing medicine into their 90s, writing books well into their 80s. All wonderful examples of the possibilities of growing older. Sometimes, in the spirit of presenting a more “positive” view of growing older, we bring up the point that people living with dementia or in nursing homes are “not the norm”, i.e. “that probably won’t happen to you, that happens to other people!”.
So here is where I get worried.
Have we created a situation in which we have attached value to the experience of growing older, as being “good” or “bad”, or “positive” or “negative”?
So that the 80-year weightlifter or 90-year old doctor is “good aging”?
And the person living in a nursing home, or living with dementia, or experiencing health challenges, is “bad aging”?
We want to abolish ageism by dispelling the notion that not all people are sick and frail as they grow older, yet we cannot do this at the expense of downgrading people who are living with illness and disability as they grow older.
Anti-ageism is not about good aging or bad aging. It is about promoting the idea that aging is a multidimensional, individual experience. It is encouraging to see people as they grow older for all that they are.
We need to change the story of growing older so that it is not driven by decline. But we also need to acknowledge that people who are growing older do become ill, do develop dementia, do live in nursing homes. And they are not out of the game. We put them out of the game.
Isn’t it ageist to not include older people who are living with dementia and living in nursing homes in the story we want to create, assumedly because they are not the story of aging we “should” tell about “positive” aging? By virtue of trying to present a positive view of aging, and pointing out that most people do not get dementia, or most people do not live in nursing homes, this can diminish these lives, and not allow them the space to present their lives as positive as well as negative.
People living in nursing homes or living with dementia also could be part of a more balanced story of growing older, one that says that despite physical and cognitive changes as one grows older, they are still growing, they are still living well. Loss and change are real. But they are not the whole story. They are a piece of a story, of which a person is the whole story. And each story is different.
Not talking in a balanced way about growing older might also tread into dangerous territory of a denial of aging.
If we only think about growing older as being about eternal youth, and with that all the things that we associate with youth, we are saying that growing older is “bad”, something to be avoided.
These recent voices have made me consider a question.
Why do we need to talk about growing older in “positive” and “negative” terms?
It is both/and.
Perhaps this is motivation for us to think even more deeply about how we do want to talk about growing older or growing with dementia.
I would like to challenge us to take this a step further. Let’s talk about the experience of growing older, or growing with dementia, as MORE than good or bad, or positive or negative.
Rather than polarizing aging as..
living in nursing home or having dementia = bad, and
not having dementia/not living in a nursing home = good,
…can we find a way of telling the story of growing older so that each person is valid, and their worth is not qualified by their health, disability, or address?
How else can we talk about ageism and how we need to change our culture of aging?
What would happen if we put less emphasis on physical and cognitive changes as we tell the story of growing older?
What if there were other ways in which we talked about what growing older means?
What if we told stories of people with dementia living well, just as much as we told stories of 95 year-old weightlifters and doctors? Those are all beautiful stories; why would we not tell them all?
What if a child visiting a nursing home did not represent him or her seeing decline, but life?
That would be because we saw that the people who live there are full of life, not full of decline. This would be because we focus on growth and possibility for each other as we grow older.
How do we get there? We have to start seeing people who live in nursing homes, who have dementia, who are growing older with physical challenges, as full of life.
Being full of life is not all rainbows and butterflies. It is both/and. Like all of life. It is both loss and gain, struggle and growth. Being full of life is founded on the idea that each person is important, each person can live well, each person deserves a life of meaning and purpose.
When we talk about the experience of growing older, we could include all examples of growing older. We could recognize that the individual lived experience of growing older is unique and different to each person and that the experience of growing older is both good and bad for every individual. Whether you live in a nursing home or you live in a house, you as an individual have a right to be seen as a whole human being as you grow older.
Perhaps the thing that we should be most concerned about transcends health, age, and disability – LIVING with meaning. Even more than the challenges that we face, physically or cognitively, or where we live, or what we achieve, there is this undercurrent of the need for purpose and meaning that is central to all of us. This is a human need that is fundamental to every single person. And although it may evolve and change throughout our lives, it does not go away as we grow older. Whether we are a 95-year old marathoner, or a person living with dementia, or a person living in a nursing home. And what great stories this makes for us to tell about growing older.
Let’s not put up on pedestals one view of growing older as the right way to grow. Aging is both/and. It is a multidimensional experience that is not about being good or bad, or any of these value laden adjectives. Let’s embrace the process of growing older, for all the things that means, with the possibilities that it provides.
I bet you are wondering how I am going to weave together these three topics.
Although we will actually get to the part about bagels in a little bit, the bagel is a surprisingly good metaphor for this conversation about social connections and paradigms – some people like them and some people don’t, individuals have very specific ways they like to enjoy them, there is a lot of discussion about how to make them the right way or get the best ones, they come in many different flavors, they are circular, they can be hard to chew….
This conversation might be hard to chew because we need to have the courage and curiosity to question ourselves. If we don’t, how will we move forward?
Unless we uncover the paradigm of growing older, and wrestle with it, how can we change it?
The paradigm is a system of beliefs, ideas, values, and habits that is a way of thinking about the real world. A paradigm is a living, breathing thing. It is not just an idea, as it takes many forms in real life. That’s how you know it is there.
This is an example of how our paradigm of growing older comes to life in how we might think about social connections and elders.
Once upon a time I had spoken with a group of elders in a “senior residence”. (Note: I am not sure of the term to best describe residential options for elders, so I am using this term here.)
In our discussions, I learned that several of the individuals who lived there were from New York City, as I am originally. As we shared stories about New York, these individuals became more animated, and developed connections with each other. I got the sense that this was a commonality that they had not previously explored together. In the spirit of the conversation, which was about social connections and community, I thought about fostering this connection through a shared sense of identity.
Later that day, I learned that my parents were traveling to New York in the next few days. I love serendipity! I asked them to bring back some extra bagels, as I had an idea of having a “bagel and coffee klatch” with my new acquaintances at the senior residence.
But how do I reach these individuals, to see if I can come and visit with them?
Even thought I had met these individuals, there was no direct exchange of information, so I would need to go through gatekeepers. You know, the people who work in senior residences that you need to go through in order to connect with the people who live there. (Another note: I do not use the term “gatekeeper” disrespectfully, but in the spirit of challenging us to think differently. I was a gatekeeper too.)
After some detective work, I was given a contact name for a person who worked at the senior residence.
I emailed this individual, explaining who I was, how I had become acquainted with the individuals who lived there, naming the New Yorkers I met, and asked for help in how to connect with them. Below is the response that has been edited so it is not identifiable.
That is very thoughtful of you. I am sure our New Yorkers would appreciate it very much as well. Unfortunately, I am not the right person to set up this type of meeting.
These residents are in the Independent Living part of XXXXXX, so I don’t set up social events for them. However, if you came to us interested in connecting with them as a Gerontologist, we could work together with you to do a presentation here at XXXXXX in that capacity and in that way, they can meet you and you can meet them. Or, you could connect with our Volunteer Coordinator, XXXXXX, and come in as a volunteer for the events that XXXXXX promotes.
Either of these would be a good way for you to get in touch with the residents, meet them, build a connection and if they want to further that connection, or meet you for bagels, this would be, of course, up to them.
Let me know if you have any questions.
The individual who responded was perfectly polite. She was likely following protocols for the organization. These were reasonable suggestions. Likely she had hundreds of emails needing responses, and I am grateful she took the time to respond to me. I understood where she was coming from.
But something nagged at me about what this was saying.
I felt like I was being kept out of the gate. I just wanted to bring these folks bagels and get to know them. But there was no clear way that I could connect with them directly. They didn’t even know I wanted to get in the gate.
In “normal” life, if I meet someone at a community event, and I want to follow-up with that person, we would probably exchange contact information.
If I only thought about it afterwards, I might contact the organizer of the event, and ask if s/he knew the person with whom I wanted to connect. I might ask if the organizer could pass on my contact information to this individual. Of course, I wouldn’t expect the organizer to share a person’s private information with me without her permission, but there would be several ways that we could explore how I might directly connect with this person. It is not likely in “normal” life that the only ways I could connect with a person would be to offer a presentation at a future event and hope that the person would be there, or to become a volunteer with the organization holding the event so that I could possibly run in to this person again.
However, senior residences do not typically operate like “normal” life. Although the people who live there are just like you and me, and need the same normal things.
Certainly, I understand that there is a level of security that needs to be considered for individuals living in senior residences. It might be irresponsible to allow “outsiders” to come and go freely. And perhaps there is a responsibility to mitigate against “outsiders” taking advantage of those living in senior residences.
On the other hand, should we be mindful of creating boundaries that would restrict people who live in senior residences from interacting with the rest of the world?
I wondered how this might be approached differently. Maybe a contact person at the senior residence would share my information with the New Yorkers directly, and let them decide if they wanted me to visit with them. A contact person might also ask these individuals if they are interested in meeting with me, and if they want to share their contact information with me. A contact person might ask me to write a note that s/he would share with them.
If I had thought of my bagel and coffee klatch when I was there, I might have asked for their contact information when I met them. Yet, I would still likely have had to get “permission” from someone who worked there, even if it was just to secure a place to meet.
To be fair, these options do require effort, and there might not be someone in the senior residence who would be tasked with doing this sort of thing.
Yet, the response suggested that there was really no easy way to meet with these elders, unless I went through the organization in a formalized way. Unless I went through the gatekeepers. In order to meet with my fellow New Yorkers, I would either have to give a presentation, or become a volunteer. These two options are somewhat time-intensive, but more importantly, did not specifically address my interest in meeting with these individuals directly, in the hopes of developing friendships. They only indirectly presented the opportunity that I would be able to meet them again, so I really wouldn’t know whether the New Yorkers even wanted to meet me or my bagels.
This experience is so pertinent to our recent national and global conversations on loneliness, social connection, and social isolation.
Within the ironies of talking about social connection with elders, I saw so many potential roadblocks to connecting socially with individuals living in senior residences.
I think this is a part of a paradigm of how we think abnormally about older people and social connections, a paradigm we need to reconsider. I see evidence that, rather than prioritize normalcy, community, and purpose related to social connections, we start with programs, policies, and systems.
We create gatekeepers when we could have connectors.
We are concerned about people being socially isolated. But do “we” create some of the conditions that allow for social isolation?
Do “we” create systems, organizations, and institutions that isolate elders from the rest of the world? Even within organizations, how much do the levels of care that we create result in social isolation, or at least discourage social connection?
Are “we” the isolators and disconnectors?
Do we mean to create isolation and disconnection? I don’t think so. I think it is another example of how the artificiality of how we have constructed systems of support for each other as we grow older becomes so normalized that we don’t see it as abnormal.
That is a big sentence. What I mean is that there are lots of artificial things about senior residences, and other types of services, that really cannot allow for normal things like social connection. It becomes normal that a person living in a senior residence would not make new friends in the “outside” community (unless that person is a volunteer). Because the systems are set up this way, still influenced by institutional thinking, they become accepted, and then we do not see how abnormal they truly are.
My fear is that this reflects an underlying paradigm that says that older people do not need to be seen. Maybe a paradigm that says that older people do not have a place in our communities. That we can’t seem to find a place where they can be active participants in our communities, in normal, natural ways. Because they are not “us”. Gulp.
And, so paradoxically, we create programs to encourage older people to not be lonely, or socially isolated, while at the same time we create systems that isolate and disconnect.
What would it look like to truly promote social connection between elders living in senior residences with the larger community? What would it look like to encouraged multi-generational connections in natural, normal ways?
What would it look like to have a bagel and coffee klatch with elders you meet and like, and want to know better?
I was recently involved in a presentation about loneliness to a group of elders living in an assisted living community. My role was to facilitate a discussion with the elders. I was asking them for their thoughts on what “social connection” meant to them.
One woman, in her 90s, listened intently and offered this response [insert Eastern European accent]:
“[Sigh] I survived the war. I just want to lead a nice, quiet life.”
There is a national conversation about loneliness and old people. It is an important conversation. But is it the “right” conversation?
According to a survey by AARP, older adults reported lower rates of loneliness than those who were younger (43% of those age 45-49 were lonely compared to 25% of those 70+). This is supported by academic research, which has similarly found that older people are no more lonely than younger people.
The reality seems to be that loneliness is not an experience that is tied to age. Many of us are lonely. Not just old people.
This should not be interpreted to mean that we shouldn’t be concerned about older people feeling lonely. In terms of numbers, there are still a lot of older people who are lonely. But perhaps, just thinking of it as an “old person problem” is not going to actually help us resolve it, when loneliness might actually be more of a widespread social problem.
According to my own theory, Sonya’s Theory of Paradoxical Disconnection, loneliness is at least partly related to us being generally disconnected in our society, starting in our own neighborhoods and communities. The paradox is that we are also more connected than ever, through technology, globalization, and ease of travel.
I don’t think I am being pessimistic. In our current society, we operate under a culture of busyness. Most people don’t seem to have time to really connect with others. The paradox of busyness is that it does not necessarily lead to connection, which is something we need to consider in how we respond to loneliness (especially if we suggest that keeping busy is a way to alleviate loneliness). We seem to lack time and energy to develop relationships in our communities. Perhaps we spend time with our families or a close group of friends, yet we don’t know our neighbors. We tend to operate in our own little worlds. We are connected yet disconnected.
Because we are generally disconnected with each other, we are particularly disconnected with people of various generations. Especially older people.
This creates the potential for loneliness for all of us. Even more, it creates experiences of loneliness that might not be well understood. Because we do not know each other, we make assumptions about what it means to be old, to be young, to be….anything. Maybe because we are disconnected from each other generation-ally, we make assumptions about what loneliness means for older people.
We need to think differently about loneliness. Maybe even starting with what it actually means.
Consistent with my conversation with the elder I mentioned earlier, lots of times when I talk about loneliness to older people, I hear things like, “But I like to be alone! Let me be alone!”.
Oh, introvert. I feel you. I am an introvert too! I like to be alone. In fact, I NEED to be alone. However, being alone and loneliness are not the same things. Although, in every day language, we might use those terms interchangeably, loneliness has a specific meaning that is based in psychology.
Loneliness is defined as an unpleasant or distressing emotion that happens when we are dissatisfied with the quantity or quality of our relationships.
If a person is feeling lonely, they are, by definition, distressed about it.
However, if a person is alone, they might not be lonely. If a person is alone and not distressed about it, that could just be their preference.
We need to be careful that we are not making assumptions that older people are lonely just because they are alone.
One of the challenges of loneliness is determining whether a person is actually lonely. We might make assumptions about how we think a person is feeling, but we might not actually know. If a person is feeling lonely, it is also important to not make assumptions about what would make a person feel less lonely. It might not be more people in their lives. It might be deeper connections. Or, it might not be deep connections at all. We need to find the right language to explore this with each other. One of the pathways we might use to do this is through talking together about social connections.
Research from a wide array of disciplines consistently supports that we are wired for human connection. Studies uncovering the factors that influence longevity almost always include the importance of relationships. We are social animals.
Yet, the type and amount of relationships we have and want varies by individual.
A person might be alone, and may or may not have social connections. And be okay with this.
A person who is feeling lonely might have social connections but does not have them in the way they would like.
It is true that, as people get older, there might be less opportunity for social connection. However, it is important to recognize that having less social connections does not necessarily mean people are lonely. It could. But it also could be possible that older people want fewer social connections. In fact, there are some theories in gerontology that say this is a part of the experience of growing older. That, for some people, they invest more heavily in fewer relationships, particularly ones that give them satisfaction. They might be less likely to invest in those that do not. As one elder recently told me, “I don’t need drama in my life at my age”.
That being said, one of the ways in which we currently seem to try to alleviate loneliness is by offering older people more opportunities to be social. However, these opportunities may or may not be personally meaningful to them. They might not be opportunities for deep connection.
These opportunities might offer the possibility that a person would connect with someone. Or perhaps the thinking is, “Well, if my mom goes to this exercise class it is better than her sitting at home”.
However, this might not actually be affecting a person’s feelings of loneliness. It might result in them being less alone. It might offer them social connections. But the person is still lonely. Maybe even more so. Because she does not feel she belongs in exercise class.
We need to be mindful of our well-intentioned identification of “solutions” to older people’s loneliness that is based on what we think they need.
This all raises more questions than answers. As Betty Friedan wisely said, “Sometimes you have to live in the question”.
What does it mean for a person to be socially connected?
How “should” an individual be socially connected? How many, and what type, of social connections “should” an older person have?
What if what someone wants, or doesn’t want, related to social connection, is not what she or he “should” do?
Is it “good” for a person to be alone?
What if someone lived through the war and just wants to lead a nice, quiet life?
Underlying all these questions are things that are bigger than loneliness and social connection. Things that we need to pay attention to, if we are to alleviate our loneliness. The first is possible underlying paternalism and ageism.
I need to point out that often the attempts to alleviate loneliness have been made by “us” to older people. Is this another form of paternalism? Are we forcing social interaction on people to help with their loneliness without involving them, or listening to what is important to them?
Is this also ageist, because we assume that older people are lonely, just because they are old? Is there an underlying ageist assumption that all older people are the same, and maybe even that they are limited in how they create social connections because of their age?
If our approaches are not considering the individual interests, needs, and feelings of a person who is lonely, then it could be paternalistic, ageist, and not person-centered to develop “solutions” that are driven by what we think older people should do, or what we think they need.
This also reflects dangerous thinking that older people cannot possibly contribute to society or others in any meaningful way,\. So, instead of seeing how they can meaningfully participate in community, let’s just offer them generalized social opportunities to “help” them be less lonely.
This ageist and paternalistic thinking also denies us the possibility of elders themselves being a key to alleviating loneliness in other generations. Having elders foster connections for us all.
Which brings me to purpose.
I find that this is often missing from conversations about loneliness. Certainly they are somewhat related. If you do not feel that you have purpose, that must be very lonely. Also, if you are introduced to opportunities for social connection that lack purpose in ways that are personally relevant to you, would you invest in them? Try them? Would they really impact your loneliness? They might even make you feel more lonely, because you might find yourself in social situations and with social connections to which you do not feel you belong, and you are not sure the point of it.
And then it always comes back to person-centeredness. If we are to address loneliness, we need to be person-centered about it. To try to see things from a person’s perspective, and understand if she or he is lonely, what social connection means to him or her, what is important to him or her. See the person. Perhaps consider that we are facilitating opportunities for purpose and connection, rather than driving solutions for older people.
The reasons why a person feels lonely could be related to many things like personality, stigma, depression, anxiety, medical conditions, transportation, and cognitive changes. It is important to understand this. For example, if a person is living with dementia, and we sense that this person is lonely, we might encourage this person to join a large group of people who are playing cards. The group might be too big for the person to comfortably navigate with their cognitive changes. It might be too noisy. The game might be too complicated. The person with dementia might be embarrassed. She might then feel even more lonely. She might retreat even more. Another person with dementia might love this group. It might make her feel energized.
As we understand the individual experience of loneliness, we can then help create, with the person, ways for them to possibly feel less lonely, in ways that are personally meaningful to him or her.
Loneliness is complex. Perhaps in our conversations about loneliness, as we explore it further, we can consider these ideas:
Loneliness is not just an “old person” problem. People of all ages are lonely.
Loneliness is a distressing emotion. It is different than being alone.
Feelings of loneliness are related to lack of social connection, in the quantity and quality of social connections.
One of the possible reasons for explaining pervasive loneliness across ages might be a disconnected society.
Antidotes to loneliness amongst older people are not necessarily having more social connections, or offering more social opportunities.
Antidotes to loneliness need to include what loneliness means to the individual, resisting ageist and paternalistic assumptions about older people, and the importance of purpose.
The problem of loneliness is not just about older people. It is about all of us. As loneliness is a problem, it is also an opportunity. For us to think more broadly about our disconnection and how we can create connections amongst us, in ways that are personally meaningful to each of us
Perhaps we can approach this from a person-centered lens, and try to understand what a person wants, what is important to him or her, what gives him or her purpose, how a person can feel more connected in our society overall, and how we can ensure that older people are seen and heard.
Happy New Year! To start off the New Year, as we turn our thoughts to the future, of this year and maybe all years, it is a good time to revisit our visions. And to be inspired by what could be.
It is so important for us all to be seen and heard, and for each of us to look and listen to as many voices and faces as possible. We are all in this together.
In this spirit, I would like to start this year with the voice of Grace Carter, a voice that inspires me.
Grace is 20 years old. At the age of 18 she spoke at the closing session of the 2017 Pioneer Network conference. The vision of the Pioneer Network is “A culture of aging that’s life-affirming, satisfying, humane and meaningful“. Here is her speech. I hope it inspires you to dream big, to see, to listen, and to be seen and heard.
Hi. My name is Grace Carter.
To have to age in a western culture has strangely become more of a punishment than a privilege. As if “we” as a society are desperately holding onto childhood and therefore rejecting wisdom and experience. Although many of us, as children, dream of the exact same process. The collective “we” wanna grow up because grown ups get to do things and know things. So then why don’t the adults want to grow up and get to know things too? Is it a culturally ground-in sense of pretension?
I’m convinced when I meet someone who’s past perhaps fifty to sixty they have secrets. These aren’t the kind they’re hiding but the kind of stories and thoughts you would not believe even after many conversations, the kind that are awe-inspiring, fascinating or just surprising. You’ve lived enough to be multiple people, multiple versions of yourself which is something so strange it’s magical and extremely valuable. To imagine the possible tales someone in their nineties could then hold is amazing.
While of course the west isn’t alone in our culture’s mistreatment of elders, we’ve fallen into a mindset of mistreatment that many cultures haven’t. Greek, Native American, Korean and Chinese cultures, for example, see aging as something to be appreciated and honored. I think it’s partly fueled by today’s fast-paced, perfectionist mindset. We, particularly for my generation, as children judge ourselves off of our peers, celebrities and from the media. We look for physical perfection and destroy ourselves over our insecurities, so imagining ourselves losing our youth can feel disastrous. Then as you get older you see “anti-aging” products advertised and a continuation of the same demographical product push that makes people judge themselves and others. In a way, aging can be purely a physical concern. But with all that talk of physically decomposing that’s broadcasted, it can make one believe it’s not just a change happening in skin and muscles. It can feel like it’s also in someone as a person.
It certainly doesn’t help how divided age groups are. If we have no interaction outside of our age it can give any age group a sort of us versus them mentality. This even happens with a group of a year or two difference in high schools. As a high school senior you usually have little to no interaction with freshman so many people in my grade then view them as this single entity of “bleh”. They have a bad interaction with one and suddenly all fourteen or fifteen year olds have personally offended them. So with today’s children only having their interactions with their grandparents to go off of, if that, it’s no wonder the “old lady”, “old man” stereotypes are able to persist.
Personally, I’ve always known many more people outside of my age group then most, and well, understood people outside of my age much better than in it. So I’ve had more distance from the judgement of adults and elders that children can often be apart of. I’ve been to far more adult-days and nursing homes than most my age. I would consider my grandma, who’s ninety-two, to be my greatest childhood best friend though I never really considered her to be old. And I think I’ve just had better interactions with people older than me. I’ve been exposed to a wonder of aging. That doesn’t mean I’ve ever wanted to grow up, but I’ve understood that we should appreciate it. And as the younger generation who will be taking care of you, the older generation, shouldn’t we all be exposed? This seems to be an avenue of culture change that is easily ignored. All the good that simple exposure and personal connection between generations could achieve. It’s not elders’ fault that age equality isn’t as hip and exciting as feminism, but it’s still a similar form of equality that our society lacks.
I think you need a joyful, accepting, open mind to change these things and that starts with who we are as people. And I would like to think that mindset is what brings people to places like this. And that culture change has to come from a kind, inclusive place in someone, and that kindness can bring all age groups together. It can allow us to step out of our generational pits and connect with each other. Then if there is personal connection, if there is understanding, if there is empathy; then there’s no longer room for any kind of discrimination. Wouldn’t that be a good future?
I am worried. This is not surprising, as I tend to be somewhat of a worrywart. This is a quality I inherited from my grandmother and my mother, and I have worked really hard to perfect it. I like to think that worry can sometimes serve a useful purpose. For me, when worry festers, when it becomes a fiery knot in my stomach, it serves to alert me that I need to work out something. Otherwise, it becomes agitation. Festering, worrying agitation is not productive. So, I am going to attempt here to work out something that is on my mind. A lot.
I do not think person-centeredness has reached its full potential for people living with dementia. It is not everything it can be.
In fact, I am worried there is a total disconnect from what it could be.
Increasingly, person-centered values underlie how we support people with dementia. These values of individuality, relationship, choice, dignity, respect, self-determination, and meaningful living drive many of the positive changes that we see in how we think about, and create well-being for, people living with dementia.
Until it comes to “behaviors” of people with dementia.
Note: I am using the term “behaviors” in quotes, not because they are not “real”, but because this term has developed a very negative connotation for people living with dementia, and does not adequately articulate the complexities of expressions and actions. Although we all have behavior, both good and bad, the term “behaviors”, related to people with dementia, refers to anger, agitation, physical and verbal aggression, crying, etc. – pretty much all the bad things many people unfortunately associate with people with dementia.
There seems to be a big disconnect between person-centered values and how we actually think about and address “behaviors” i.e. the way people act.
In other words, we suggest that we are practicing person-centered values, but our words and actions are saying otherwise.
There is a trend I have been noticing more and more. It is to talk about person-centered care of persons with dementia and at the same time use terms like BPSD (Behavioral and Psychological Symptoms of Dementia), agitation, wandering, sundowning etc., even sometimes in the same sentence. It is not just the use of the words that is worrisome. It is the meaning that is behind them. The paradigm that these words reflect is not person-centered.
Why are you worried, you might be thinking. We are talking about person-centeredness – that is good, right?
Sure, that is true. Yet, the way we are talking about person-centeredness, related to “behaviors”, is totally at odds with person-centeredness.
In these contexts of “behaviors”, person-centeredness is rarely reflected in the response – to try to understand things from the person’ with dementia’s perspective, to understand what they are telling us, to identify what they need, and, very importantly, to acknowledge that these expressions signal missed opportunities to enhance well-being for a person with dementia. That there are things we can be offering to a person with dementia that respond to their human needs of identity, autonomy, connectedness, security, growth, meaning, and joy (thank you, Eden Alternative and Al Power).
It is almost like we are saying, yes, we like the values of individuality, relationship, choice, dignity, respect, self-determination, and meaningful living! ……Most of the time!
Until a person with dementia is “agitated”. Then, person-centeredness does not apply.
However, person-centeredness is not situational. Person-centeredness INCLUDES seeing “behaviors” differently.
The best way to explain what is in my brain, and what is giving me anxiety, is to go through a few examples of things I have seen and heard that illustrate this disconnect.
“Person-centered approaches to wandering.”
“Person-centered strategies for sundowning.”
“Effectiveness of person-centered care for problem/challenging behaviors.”
If person-centeredness is built on the idea that we see the person, not the disease, that we try to understand who someone is, and their perspective, then we need to consider that these statements do not reflect person-centeredness.
It makes me uncomfortable that all those words are together in the same sentences. It seems like they almost cancel each other out.
“A person-centered approach to [insert labeled/problematic behavior or BPSD]” is inherently not person-centered for several reasons.
We need to consider that the terms we use to describe the way people with dementia act are fundamentally not person-centered, even if there are good intentions in terms of offering person-centered approaches to them. We are labeling the way a person acts, and positioning it as a problem, often a medical problem. When we do this, we are not motivated to seek the reasons why the person is acting this way, and to acknowledge that this “behavior” might be just normal human behavior, not pathological (a fancy way of saying it is due to disease).
“Wandering” is an example of a labeling term that we use to describe people walking around. However, the term “wandering” suggests lacking purpose. If it is simply a purposeless activity there is no reason to understand why a person is “wandering” – they are just wandering! This is not person-centered.
“Sundowning” is another example of a labeling term we use. It describes people getting restless, frustrated, and maybe even angry at the end of the day. “Sundowning” is often described as a medical syndrome and people are medicated in response to it.
Describing how a person with dementia acts at the end of the day as “sundowning” is not person-centered. It ab-normalizes the way a person is acting and does not try to understand what it means for that person. Person-centeredness would include considering that “sundowning” is not necessarily directly the result of a brain disease (as in there is a sundowning center in the brain that is inevitably turned on by dementia), but that the cognitive changes that come with dementia might make it more difficult for a person with dementia to navigate the day, and leave them quite exhausted and drained at the end of the day. These very human responses might not be pathological, but normal for that person (or any person for that matter).
To label these actions contributes to non-person-centered thinking and responses. It medicalizes the way people with dementia act. It groups their actions into one category, without considering that these are individual expressions that are unique to persons, situations, how they are experiencing the world, what they are communicating, etc.
Related to BPSD, the person-centered approach to BPSD is to not call it BPSD.
There is another reason I am worried that these statements reflect a disconnect. When we describe person-centeredness primarily in terms of approaches, we are at risk of neglecting the bigger picture of person-centeredness, which is not only the specific practices we adopt, but the overall way that we think about a person with dementia, try to understand who they are, and learn what is important to them.
Person-centered approaches can become band aids. They are applied to the “problem”, they might even be individualized to the person, but they are only one piece. There is still the bigger issue of what is meaningful to a person and what it means for them to live well. Person-centered approaches are chipping away at the paradigm of dementia that has prevailed – the one that says people with dementia are broken, gone, problematic. But they might not penetrate the paradigm deeply enough to change it.
Person-centered practices, approaches, or strategies might actually not be person-centered, if they are disconnected from the bigger picture of person-centeredness.
Let’s look more deeply at “wandering” as an example. A person-centered practice might be described as “distracting” a person with dementia who is “wandering”, with another activity, so that they don’t “wander” anymore. This practice might or might not be person-centered; it depends on whether this practice is related to who the person is, what they like to do, and why they are “wandering” in the first place. A person-centered practice would take into consideration that wandering walking around is perhaps normal for that person, reflects their interest in going outside and getting fresh air, and can be accommodated safely. Providing something for a person to do might be person-centered if, for that person, walking around means that she or he is looking for something to do. If distraction is being used to just keep the person from doing what she or he wants to do, that is not necessarily person-centered (it might even be considered carer-centered instead). The bigger picture of person-centeredness would encourage us to understand what a person needs so that we can try to meet that need. Then we can also be more proactive about it. We would have a plan for how to make sure this person gets his or her walks.
“Person-centered strategies for behavior management of people with dementia.”
When we describe how we respond to people with dementia as managing the way they act, this is not person-centered. It is not person-centered because it is not considering what they are trying to tell us with their actions, what they need, or simply acknowledging that we all have a right to express ourselves. Also, managing the behaviors of people with dementia suggests that WE are in charge, and that WE need to change THEM.
Person-centered values would tell us that we need to try to see things from THEIR perspective. And that we need to manage OUR behavior to meet they where they are, rather than expect them to meet us.
When we look only at approaches that address, or “manage” specific “problem” behaviors, we are missing the opportunity to truly be person-centered.
I broadly define person-centeredness as a multi-dimensional focus on who a person is and what is important to him or her. In order to be person-centered we have to know a person, meaning who they were, who they are, and who they want to be.
If person-centeredness is about seeing the person as a whole human being, then labeling the actions of a person with dementia is not really seeing them as a whole human being. It is not describing the way they act but seeing them as an illness, or a problem, or a symptom. It is not person-centered.
If person-centeredness is based on an experiential model, meaning seeing things from the perspective of the person, then labeling their actions and expressions reflects that we are not seeing things from their perspective. Labeling implies that we are judging something from our perspective. It is not person-centered.
If person-centeredness is about trying to understand what a person needs, based on who they are, and many other variables, describing how a person acts as a problem/difficult behavior, BPSD, etc. has the potential to ignore what the person is communicating about what they need. It has the potential to dismiss their humanity. This is not person-centered.
We are moving towards a paradigm that reflects person-centeredness, but I am worried that we are going down the wrong path sometimes. I am worried that the old paradigm is still hanging on, and it is tarnishing the meaning of person-centeredness. It is just not there yet.
Remember how, in the movie Jerry Maguire, Dorothy says about Jerry:
“I love him! I love him for the man he wants to be.
And I love him for the man he almost is.”
That is the way I feel about person-centeredness right now. I love you, person-centeredness, for what you want to be and for what you almost are.
I think we can help person-centeredness get there.
We have to embrace person-centeredness in its entirety, and apply it universally. If we are putting people with dementia at the center, then education, research, and practice would reflect that people with dementia are individuals – whole human beings who are more than their diagnosis and more than their actions.
By putting people with dementia at the center of person-centeredness we are saying that the lens through which we see them, talk about them, support them, etc. reflects how THEY see the world, what is important to THEM, what THEY need. This is where we start. This puts us, as people supporting people with dementia, at the center, WITH them.
I was visiting Jane, who lives in a nursing home. Jane is 94. She tells me, rather nonchalantly, that she will die in her bed. She can no longer get out of the bed.
I ask her why. She says it is too painful to move. She sees my look of concern and tells me that it’s okay, that it is her choice.
We chat for nearly an hour.
She worked for a government agency, one of those agencies that takes you around the world. She lived in Europe and Africa. She was an avid skier.
She asks me at one point what it is like outside today. She is now living in a bed.
She is resilient.
The human spirit prevails.
Our paradigm of aging sometimes tells us that aging is about weakness or that older people are weak. I imagine that, if you read her medical chart, it would seem that Jane is “frail”. We often use the term “frail” to describe elders. Yet, it does not properly acknowledge the resilience that older people show on a regular basis, in various ways.
On the other hand, so often when we talk about resilience and growing older, we focus mostly on elders who are “healthy”, “active”, etc. Certainly they can be resilient, but in my mind, not because they are “healthy” or “active”. They are resilient because of how they adapt to their past and current life experiences.
How they show up in life, even when they cannot get out of the bed.
I want to stress the point that people living in nursing homes, people living with dementia, people who are not 98-year old weightlifters are also resilient. This is the invisible resilience that we might not see. So I want them to be seen.
To think that any older person is weak is somewhat ridiculous, when you think about it.
I used to do a lot of work in Veterans’ nursing homes. Many of those men and women were challenged physically, emotionally, and cognitively. But I cannot imagine calling them weak. As I spoke with men who were in the Battle of the Bulge, and women who served as combat nurses, I could only think of resilience.
Other examples of resilience that might not be seen:
A woman who just lost her husband after 70 years of marriage accepts my invite to my wine club. It is the first time she has gone somewhere alone in several years. She is not weak. She is resilient.
A man with dementia tells me that it is worth having this disease if he can make a difference by creating awareness about it. He is not weak. He is resilient.
A woman with dementia yells “Help me” to each person who passes her by, because she is lonely and wants human connection. She is not weak. This is resilience.
Resilience can be quiet and invisible. So we might only see weakness, when resilience is really there.
We seem confused about what resilience is and what it looks like.
While we often confuse resilience with strength, they have different meanings. While strength might be thought of as something unflinching or unmovable, these qualities are static. Resilience is a dynamic process of adaptation and elasticity. There is thoughtfulness in resilience. It is imperfect. It involves active thought and maybe reckoning. I like to think it even requires curiosity – of oneself and how one is interacting with the world. Resilience implies growth. In other words, the opportunities for resilience continue throughout life.
It is interesting to me that, in many definitions of resilience, it specifies that resilience is the ability to bounce back “easily”. The “easily” part of this definition confuses me. I think most of us would agree that becoming resilient is quite hard. If we bounce back from something, and it is not easy – it is hard – does that mean we are not resilient? I don’t think so. Isn’t resilience something you work at? I am quite sure it is not “easy” for Jane to live in her bed. Yet, she is surely resilient.
Perhaps we need to reframe the idea of resilience.
I think elders are the experts at being resilient.
Perhaps this is true by the very nature of acquiring more life experiences through growing older – there simply are more opportunities to be resilient. However, perhaps it is also due to the unique challenges and opportunities in “being old” that encourages resilience.
When we think about resilience, we might often think of it in reference to something that happened in the past. A person survived cancer. Or, a person overcame the death of a loved one. Indeed, this is resilience. There is also the resilience of the present, however. How a person shows up every day.
So, perhaps elders are particularly resilient because of what they have experienced, as well as resilient for what they are experiencing now, and will experience.
It is important to emphasize that resilience takes many forms. For Jane, her resilience is in her unending curiosity for learning about others, and sharing her story. For someone else, it might look quite different. This does not make the resilience any less. Maybe we have to pay attention to it more.
I am thinking of various people I have known who were at the end of their lives. Many of them could no longer express themselves with words. Perhaps one might see these people and think they are “wasting away”. Could we consider them also as resilient? Could their resilience be in each breath they take, in how they are living in the world, yet leaving it? Could their resilience be in their gifts to us about the fragility of life, and the reality of death?
I am also thinking of elders I have known who do not leave their rooms or their homes. Who do not want to interact with the world anymore. For some, this might be their own form of resilience, the way in which they need to interact with the world on their own terms. In some cases this might also present opportunities for us to reach out and connect with people so that they can practice resilience, perhaps by providing them with opportunities to show up in ways that are safe and meaningful to them.
Elders demonstrate resilience in their physical challenges and changes. This is true for elders of all abilities. There is resilience in both the elder recovering from a hip fracture, as well as the elder running a marathon. There is resilience in the everyday challenges of bum knees, sore shoulders, or adjusting to changes in vision. There is also resilience in resting, in conserving energy for what is important. And resilience in dying.
There is resilience in living with the cognitive changes of dementia. As a person sees the world differently through the experience of dementia, they try to make sense of it. They are problem-solvers, rather than how we often label them as problem-makers. This is resilience.
There is emotional resilience too. This is resilience that seeks joy, connection, and love, as well as acceptance, loss, and grief.
How can we consider elders weak, when they show us their resilience all the time? What can we learn about the unique ways they experience resilience, and how they get there?
Resilience relies on vulnerability, not weakness. We commonly think of vulnerability as weakness. However, according to Brené Brown (social worker, researcher, author and my best-friend-although-she does-not-know-it-yet), vulnerability is actually courage. It is willing to show up and be seen in our lives. And this is the cornerstone of resilience, because it is only through showing up that we can dynamically experience life, and gain resilience. One cannot become resilient without being vulnerable.
I have reflected on this as I am in the midst of spectacular elders. Their vulnerability in having the courage to show up and be seen, despite challenges, is beautiful. Through their courage and resilience elders are revealing to us how to navigate some of the most fundamental and pure human experiences. The human spirit prevails.
The way elders “show up” might be subtle, and even unnoticed. Maybe it is when an elder first moves into a nursing home, leaving behind everything she knows. Maybe it is how she sits quietly to get back in touch with her self, when she feels like her self is at risk. Maybe it is when an elder has the courage to speak to her neighbor. Maybe it is the first time a stranger helps her with a shower. All of these instances reflect both courage and vulnerability.
“Vulnerability is not winning or losing; it’s having the courage to show up and be seen when we have no control over the outcome. Vulnerability is not weakness; it’s our greatest measure of courage.”
― Brené Brown, Rising Strong: How the Ability to Reset Transforms the Way We Live, Love, Parent, and Lead
I think of Jane in her bed, being both resilient and vulnerable. She is vulnerable not because she is weak. Her vulnerability is in her willingness to keep showing up. She is not able to see the world anymore. And yet, she keeps showing up to life. She lets someone like me come to her, and sit with her, so that she can maintain human connection, and be seen. I will admit that, at first, I was so sad to think of what she could no longer do. I was upset that perhaps they were not controlling her pain, or doing more for her. But then, when I considered the incredible resilience in what she could do, and who she was, and her courage to share that with me, that sadness turned to awe.
Vulnerability means daring to show up and be seen, “even” when you are living with dementia. Even when you are the only one in the dining room with a walker. Even when you state what you need, contrary to what everyone else around you thinks you need. Even when you are more reliant on others for getting through the day.
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.
“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?)
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.
My mischief became clear to me when I was recently with a group of elders at an assisted living community. We were talking about social connection and were listening to the elders share what this meant to them, how they might be heard, and what was important to them. What gave them purpose. What gave them, or any of us, a reason to get up in the morning.
As I was presenting these questions to them, one woman, who had 91 years, sat up in her chair and said:
“You mean mischief?”
Yes. Mischief. As usual, the elder nailed it.
It is such an interesting word, isn’t it?
The Cambridge Dictionary says mischief is “behavior, especially of a child, that is slightly bad or causes trouble but is not intended to harm anyone”.
Interesting that they specify this behavior to a child. So, if an adult engages in mischief, is it called something else? What about a 91- year old woman who gets a twinkle in her eye just by thinking about mischief?
I also find it interesting that mischief is only “slightly bad”. Just enough bad.
What resonated most was the idea of mischief causing trouble, and not intending to harm anyone.
Hmm. Maybe like a revisionary gerontologist?
There is another definition of mischief. One I did not know. In the law, “mischief rule” is “a principle used for the interpretation of a statute. This principle is used by the courts to determine the intention of the legislators. This principle aims at finding out the mischief and defect in a statute and to implement a remedy for the same.”
In other words, what is the mischief or problem for which this law was created to solve? So, a mischief might be understood as something that is wrong. Something that needs to be changed. Maybe something that needs to be revised? Perhaps the mischief that is the current paradigm of growing older and growing with dementia?
You have not heard from me in awhile and I have missed Being Heard. But I am back. This is what I have been up to. My own kind of mischief. And I have lots to share.
Stay tuned. We will make a merry band of mischief makers.