“If we could agree that for six months we would not ask How?, something in our lives, our institutions, and our culture might shift for the better. It would force us to engage in conversations about why we do what we do, as individuals and institutions. It would create the space for longer discussions about purpose, about what is worth doing. It would refocus our attention on deciding what is the right question, rather than what is the right answer.”

– Peter Block, The Answer to How Is Yes (emphasis added)

I recently met someone who had just learned about my blog, and the way she described it was, “Oh yeah, the one where you ask a lot of questions.”

I know that here on Being Heard, I pose a lot of questions. My general belief is that we have to start with the questions, to challenge or change our thinking about growing older and growing with dementia. And then the questions lead us to new and innovative ways of doing things.

So then we also have to seek new ways of doing things.

Enter entrepreneurial gerontology.

Even if you do not consider yourself an entrepreneur, we all need to think like entrepreneurs. Ask questions. Think big. Try new things. Be better than a stick in the eye (sorry, inside reference).

I am sharing this article I wrote, which was originally published on April 8, 2019 on www.strianews.com.

Entrepreneurial Gerontology is a Thing—and We Need It

As a gerontologist who never liked being put in a box, having worked in several settings within aging as well as across education, research, policy and practice, I often found myself inspired by out-of-the box, innovative ideas. My immersion in person-centered philosophy and practice further encouraged me to seek out new ways of doing things. So, I became something of an entrepreneurial gerontologist.

Entrepreneurialism, in the purest sense of the word, attempts to develop something new.

Entrepreneurial gerontology broadly refers to a bridging of the worlds of aging and innovation. This innovation is not just technological, although advancing technology provides us with possibilities to offer supports and services in a different way. This innovation is about allowing for creativity to develop and implement new ideas.

Entrepreneurial gerontology includes the entrepreneurial community and those in the field of gerontology and aging, which includes, but is not limited to, practice, policy, research, education, business, nonprofits, and government.

Gerontology Is Rooted in Innovative Potential

Gerontology, the study of aging, is necessarily a multidimensional field, as growing older is a multidimensional experience. Because gerontology looks at the whole person in all its complexity and uniqueness, and utilizes knowledge from various disciplines like psychology, biology, sociology, public policy, economics and healthcare, it has always had the potential to offer innovation. Unfortunately, the field of aging might be seen as the opposite of innovative.

It only makes sense that gerontology would find a perfect marriage with entrepreneurialism. This marriage exemplifies a paradigm shift in recognizing that growing older is best served by multidimensional supports and services. This is both for newly identified challenges, as well as longstanding challenges in aging, such as understanding how to best support people living with dementia, transforming long-term care and creating more senior residential options.

We need each other. We need entrepreneurialism to develop new ideas. And entrepreneurialism needs the field of aging to inform and test these ideas.

Within the aging ecosystem we hold pieces of experience and knowledge that is essential to entrepreneurial endeavors. Entrepreneurial gerontology taps into this knowledge and translates it into ideas that can truly be out of the box; are not “restricted” by payment sources, eligibility criteria, or traditional thinking about programs and services; and might be outside the traditional systems of supports and services, but also could be integrated/used by them.

Entrepreneurial Gerontology Is Already Happening

There are several examples of this. One is the Village model, which offers a network of services to older adult members living in their own homes in a particular geographic area. Another is the development of compact homes with universal designs that foster interdependence, such as the Minka model.

Entrepreneurial gerontology includes ideas like LifeBio and MemoryWell, which capture older individuals’ life stories. It is also organizations like Ibasho, which creates “socially integrated and sustainable communities that value their elders”. Or In the Moment, which provides “online education, support and inspiration to thrive in dementia and in life.” Just like there is no single story of growing older, there is no single story of innovations that are needed to support us as we grow older.

Entrepreneurial Gerontology Is a Way of Thinking Differently

Yet, entrepreneurial gerontology is not just about developing new products and services. It is a mindset that also offers new approaches to how we develop products and services.

For example, entrepreneurialism offers practices such as user-centered design, which ensures we actively seek out and use the perspectives of people who are growing older. This is counter to traditional ways of thinking about supports and systems for older adults that are driven by policy, reimbursement, or even paternalism. Entrepreneurialism offers concepts like open source and crowdsourcing, which encourages ideas to belong to everyone.

Another approach we gain from the innovation in entrepreneurial gerontology is the cross-pollination of different fields (outside of aging) that might see challenges and possibilities differently. For example, Stitch, “an online community which helps anyone over 50 find the companionship they need” was created because its founders saw technology being underutilized to foster these social connections. The founders’ backgrounds were in computer science, engineering, business, and communications.

Another opportunity in entrepreneurial gerontology is its potential is to break down silos in aging by integrating knowledge and experience from within various sectors of gerontology. While the silos of research, policy, and practice can be quite separated, entrepreneurialism is an opportunity to bring these worlds together. An example of this might be in the NIH SBIR (National Institutes of Health Small Business Innovation and Research Grant) program, which provides funding for small businesses to creative innovations to improve health. A central criterion of proposed ideas is that they must be founded in scientific merit, as well as having practical, innovative, and commercial value.

We Can All Be a Part of Promoting Entrepreneurial Gerontology

Entrepreneurial gerontology has been given a boost by the presence of entities like Aging 2.0, MIT AgeLab, the Hatchery – AARP’s Innovation Lab, and Ideo’s Designs On Aging. And there are several ways in which we can all further engage in entrepreneurial gerontology.

1. Cultivate the involvement of stakeholders in aging with entrepreneurial activities. This might include connecting with incubators, startup groups, or innovator networks like Aging 2.0 chapters, 1 Million Cups or Creative Mornings.
2. Cultivate connections between entrepreneurs (who are not in the aging space) and professionals in aging to so that entrepreneurs gain from their knowledge. For example, an entrepreneur looking to disrupt long-term care might have an excellent innovation, but needs to better understand the culture of long-term care.
3. Ensure that older people, and those who support them, are actively involved, informing both entrepreneurs and professionals in aging of the challenges and opportunities.
4. Encourage students in gerontology and related fields to explore entrepreneurialism – there are limitless possibilities to do things differently and innovatively.

At the heart of innovation and the entrepreneurial mindset is the idea that we can always do better. When we embrace this mindset, it shifts our thinking from a focus on the “problems” of aging to a focus on the possibilities. Let’s move from “we can’t” to “how.”

 

Do people with dementia really “live in the past”?

Wow, this question led me down a rabbit hole.

And then I thought about Alice in Wonderland and that rabbit hole.

Hmm, that is so meta.

In Alice in Wonderland, when Alice follows the White Rabbit down the rabbit hole, a common interpretation is that she is on a journey to seek knowledge. The White Rabbit itself is sometimes considered a symbol of curiosity.

“Alice follows the rabbit because she is ‘burning with curiosity.’ Soon she finds things becoming ‘curiouser and curiouser.'” – Alice in Wonderland, Lewis Carroll, p. 19

Another parallel with Alice in Wonderland is the interpretation that Alice is entering the surreal, an alternate world, a complex and perplexing world. And the fear that she is losing herself.

This is how people have described the experience of dementia to me.

I believe we have to go down the rabbit hole, in a quest for continued and deeper understanding about the experience of dementia, and to become curiouser and curiouser.

So, let’s jump in, shall we?

It started with this question: Are people with dementia really living in the past, as if they really believe they are in a previous time, at a previous age, like a time traveler?

I am considering this question because I have heard this phrase of “living in the past” used often to describe people living with dementia. And it seems like we have developed several ways of responding to, and trying to support, people living with dementia that is based on this seeming assumption that people living with dementia are actually living in the past.

So, it made me wonder what we mean by “living in the past”, and that we perhaps might need to become curiouser about it.

What we observe about people living with dementia is that they might talk about their children as if they are still young. Or, tell us that they need to go to work, when they no longer work. Or, disagree with us that they are their actual age, perhaps suggesting they are a younger age. They might ask for their mothers, as if their mothers are still living, when they are not. Or, recount stories from their childhood or young adulthood. They might use their native language.

So, perhaps we assume then that they are “living in the past”.

When I think about it, I have never seen any neuroscientific evidence that people with dementia are actually living in the past, in that their brains have rewound to that time.

Overall, there seems to be limited evidence regarding the strength or weakness of long-term memory in a person living with dementia, from a neuropsychological perspective, mainly because it is complex and hard to measure. Aspects of long-term memory are better for some people with dementia than others. For many people living with dementia, especially Alzheimer’s disease, aspects of long-term memory seem to weaken with progressive brain damage from their disease. The evidence that does exist, related to memory in people living with Alzheimer’s in particular, mostly refers to a person’s difficulty in recalling information. It seems important to note that recall refers to the ability to retrieve information from the past.  Could it be possible that memories are still “there” and they just can’t be accessed easily?

So, memory is very complex and there is a lot we don’t know about memory, including how it works in people living with dementia. What we do know is mainly based on how brains work in contrived laboratory situations, whether it be neuroimaging or neuropsychological assessment. Not necessarily real-world situations. (Neuropsychologists and neuroscientists, we say this with love and respect, and perhaps you would not disagree. Just being curious!)

In other words, it is difficult to support the idea that people with dementia actually “live in the past”, from a neuroscientific perspective.

Might there be alternative explanations for a person with dementia “living in the past”?

Let’s keep tumbling down this rabbit hole.

Perhaps when people living with dementia seem to be “living in the past”, they are having strong vivid memories. They feel real, and they are real, because they are being experienced by that person.

All of us can identify with this.

Have you ever had a moment when you were hit by a strong recollection of something in your past? Maybe it was a memory of a time in high school, and it felt so real. You can remember small details of who you were with, what you were doing, and what music was playing. Maybe even, in some way, you were transported back to that time, as if you embodied that memory.

We all have had strong memories of the past. But when you experience that memory, are you really living in the past? Do you really believe you are that past person?

Perhaps, when people with dementia are talking about a past event or time, as if it is happening now, they don’t actually believe they are living in that time.

Perhaps they are using the language that is available to them to describe what they are experiencing. Because many people with dementia have challenges with language, could it be, that because that memory is real to them, they are articulating it as real? But that they do not actually think they are living in that time.

Even when a person living with dementia speaks in her native tongue, could it be that she is using the language that is available to her? Rather than thinking she is living in that past time when she often used that language?

There are endless alternative reasons for why a person living with dementia seems to be acting like she is “living in the past”.

We focus a good bit on the past of people living with dementia. Possibly because we (misguidedly) think “that is all they have”. A person’s life story is extremely important. That goes for all of us. Yet, would any of us want to be entirely defined by our past?

To be clear, I am not saying that reminiscence and talking about the past is “bad”. The focus on people living with dementia “living in the past” is well-intentioned. It is an effort to maximize the strengths of people with dementia – if a person can’t seem to recall recent events, and can seem to remember past events, it makes sense to focus more on what a person with dementia CAN remember. Perhaps reminiscing about the past brings a person with dementia joy and comfort. Perhaps it helps a person feel grounded when the world around her seems confusing. Perhaps it helps a person feel whole.

The concern is that this assumption of people “living in the past” is interpreted to mean that all people with dementia only live in the past, or mostly live in the past, or are actually going back in time.  When they might not.

I’ve become curiouser and curiouser about what this assumption might mean for how we see people living with dementia, and support them

We are picking up speed down this windy rabbit hole.

How does thinking that people “live in the past” affect how we think about them?

Describing people with dementia as “living in the past” has the potential to “other” them. It abnormalizes this normal human behavior of reminiscing. And it is a way of maintaining that people living with dementia are so different than us. “Those people” who “live in the past” are not in “our” reality.

Yet, they are still here, right in front of us.

An over-emphasis on people living with dementia as “living in the past” might also result in an over-emphasis on memory challenges and keep us from seeing the other non-memory-related cognitive challenges they face – difficulty with attention, information processing, and language, for example. For some people with dementia, having challenges with memory is not their most significant challenge.  Cognitive challenges of dementia are different for each person.

Why is this important? Why could it be limiting to think that all people living with dementia “live in the past”?

When we hold this assumption about all people with dementia “living in the past”, we build supports, services, and residential communities that are centered around this. This could be confusing to people with dementia, or it might not meet their needs.

Each person with dementia is a unique individual with a different life story. There are endless ways in which one person with dementia is different than another person with dementia.

A person’s past is made up of many different things. It is highly complex. And what is clear to a person at any given moment may change in another moment.

Even if a person with dementia seems to be “living in the past”, there is likely not a single version of the past that a person is “living” in. I grew up in a very urban neighborhood in Queens, New York. in an apartment. I also spent a lot of time at my grandparents’ country home. Then I lived in a suburban area during high school. These are all aspects of my past. So, if one was creating supports and services for me, as a person with dementia who is “living in the past”, would you re-create my Queens experience? My country one? My suburban one?

But why does this matter?

Because believing that people with dementia only “live in the past” limits our ability to see people with dementia for who they are today.

Not just for what they can or can’t remember today. But for who they are today.

Focusing on people with dementia “living in the past” has possibly kept us from another important quality of people living with dementia – that they actually are really good at living in the moment. That they have an amazing ability to accept what is in front of them, and be with it, for that moment.

Why is this important?

Because people living with dementia are individuals. They are multidimensional human beings who have more than one story, and a myriad of memories that are all part of who they are today.

Because we need to see people with dementia for more than who they were, but for who they are now. And who they WILL be. We are all capable of ongoing growth and experience, including people living with dementia.

Because people with dementia might be the exemplification of curiosity, with their ability to deeply experience long-past memories, as well as deeply experience this present moment.

How do we cultivate this curiosity, and honor its complexity? How do we ensure that the supports and services we create for people living with dementia reflect who they are as multidimensional individuals?

“‘Who are you?’ said the Caterpillar.

This was not an encouraging opening for a conversation. Alice replied, rather shyly, ‘I — I hardly know, sir, just at present — at least I know who I WAS when I got up this morning, but I think I must have been changed several times since then.’

‘What do you mean by that?’ said the Caterpillar sternly. ‘Explain yourself!’

‘I can’t explain myself, I’m afraid, sir,’ said Alice, ‘because I’m not myself, you see.’

‘I don’t see,’ said the Caterpillar.

‘I’m afraid I can’t put it more clearly,’ Alice replied very politely, ‘for I can’t understand it myself to begin with; and being so many different sizes in a day is very confusing.’

‘Well, perhaps you haven’t found it so yet,’ said Alice; ‘but when you have to turn into a chrysalis — you will some day, you know — and then after that into a butterfly, I should think you’ll feel it a little queer, won’t you?’

‘Not a bit,’ said the Caterpillar.

‘Well, perhaps your feelings may be different,’ said Alice; ‘all I know is, it would feel very queer to me.’

‘You!’ said the Caterpillar contemptuously. ‘Who are you?’

Which brought them back again to the beginning of the conversation.”

-Alice in Wonderland, Lewis Carroll, p. 59

 

We so underestimate people living with dementia.

I have heard us say things like, “You can’t connect with a person with dementia, because of the dementia. The person is gone. They are no longer there.”

I am grateful to Dr. Steve Sabat, who reintroduced me to something I had buried deep in my brain from my former psychology studies – the idea of “fundamental attribution error”.

Fundamental attribution error is a social psychological phenomenon in which, when we are interacting with a person, we attribute that person’s actions more to his or her internal factors rather than external factors. Internal factors could be personality, disposition, motivation, etc. External factors could be the situation, or how we are acting towards the person. It is not that the internal factors of a person are NOT a factor. It is just that we overemphasize the influence of these internal factors on their behaviors, and under-emphasize, or even ignore, the influence of external factors on their behaviors.

An example of fundamental attribution error would be:

I go to a networking work event, and I am talking to an entrepreneur, who during our conversation, continually looks around the room and seems less interested in our conversation. My interpretation of his behavior is that he is an essentially rude person (internal factors). I underestimate the impact of the situation – that he is at a network event in which there are several investors, and that he has accurately surmised from our conversation that I have no money to give him (external factors). I might even have the same behavior as him, later that evening, in which I rather abruptly end a conversation and wave at another person on the other side of the room. Yet, when I act that way, I attribute my actions to being social, not to being rude.

In human nature, we tend to do this in a lot of social situations. And it seems to be especially true in our interactions with people living with dementia.

In many cases, the way a person with dementia is acting is attributed more to the person with dementia, and their internal factors, i.e their dementia, than to external factors – the situation that person is being put in, how s/he is being treated by others, etc.

If a person with dementia is upset, we attribute it to the dementia. Less to the situation in which we are asking someone to do something she does not want to do. If a person with dementia is frustrated, we attribute it to the dementia. Less to the situation in which a person with dementia is being talked over, or not given a chance to communicate his/her thoughts.

Maybe it is us.

Maybe we need to find ways to attribute the actions, or lack of actions, of a person with dementia to ourselves, and to other external factors, that limit a person with dementia from being more than their dementia (which they are).

Maybe we need to take responsibility, that even though we are caring, loving, well-intentioned people, we might enable (or even create) the situations in which people with dementia are “no longer there”.

I have “done” fundamental attribution error. And pure grace has led me to people living with dementia and experiences that have created awareness of this so that I could do better. They have helped me SEE people as more than their dementia.

This is a story I recorded a year or two ago for In The Moment, an organization which “provides education, support, and inspiration to thrive in dementia and in life.”

It is a story of fundamental attribution error, and how we will see what we expect to see in people living 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.

Hi Sonya,

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.

Best,

XXXXXX

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.”

Fair enough.

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.

Then person-centeredness can be all it can be.