Bagels, Social Connection, and Paradigms


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.



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.

business card

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?


Loneliness. Old Person Problem?

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.

vintage-2024922_1920One 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.

left-out-624736_1920We 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.

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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.

fashion-1295985_1280And 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.


The Future: The Wonder and Magic of Aging

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 Love You for What You ALMOST Are, Person-Centeredness.

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.

BOXE.jpgRelated 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.”

Jerry Maguire (1996); Image from

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.


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.

Even when you are never going to leave your bed.

This is what resilience looks like.


Being Better than a Stick in the Eye

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?”branch-308013_1280.pngI believe the things we do to try to support people with dementia almost always come from a good place. We want to help them. Many times we do not know how. So, we do our best at that time.  One might argue that something is better than nothing.

But, is it? How can we do better?

I was remembering Al’s story as I heard this quote from Kyrié Carpenter:

 “When people are starving, they will accept anything.”

These simple and profound words were said in reference to a discussion about “fake” things we give people with dementia (in this case, it was fake pets, baby dolls, etc.).  It resonated with me deeply.  It kept nagging at my brain.

As I thought about it, it occurred to me that this statement held broader meaning and deeper wisdom outside of its original context. It challenged me to consider how the truth of this – that people are starving and will accept anything – might hold for many aspects of how we try to support people living with dementia. It brought up many questions for me.

Is a part of our current paradigm of dementia the idea that “anything we do for people with dementia is ‘good'”, because dementia is so bad?

If people are starving, and they will accept anything, is what we are doing for them really helping them? Is it what they really need?

How are we paying attention to whether these things are actually in line with person-centered values that honor people with dementia as whole human beings, and as individuals with needs that are varied and unique to each person?

Dementia is life-changing. I have had the honor of collaborating with people living with dementia and their care partners for many years, and I can tell you without reservation that they are starving.

They are starving for information and support. They are also starving for relationship, connectedness, ways of finding purpose, being treated equally and with dignity, and many other things. People are suddenly plopped into this world of dementia without a map, and it is scary as hell.  The maps that are available do not present the whole picture of dementia, but only pieces of it, so they only know what they know, and don’t know what they don’t know. When they find “directions” they are not always certain whether they are the right ones.


A person with dementia goes to the doctor to get her diagnosis. The doctor tells her she should not worry, she just has a touch of dementia. She is starving for something, anything, and she accepts this.

A family member is at wits end with his wife, who is living with dementia, because she gets angry when he helps her get dressed. He tells his support group, and they tell him that he needs to ask for medicine for her to be more cooperative. He is starving and accepts this. His support group is also starving and has accepted this.

I have sat with family members who tell me the things they have found on the internet that promise a cure. People with dementia tell me how they are told by someone or read somewhere that they just need to do Sudoku, eat blueberries, exercise, etc. and that will cure their dementia. People with dementia read that they will become sundowners. They are told that all people with dementia will become angry and violent.

They accept these things. They are starving.


This is an important thing to recognize, because when we know that people are starving, and that they will accept anything, we need to be really mindful of what we are offering them.

I do not mean to suggest that people with dementia and their care partners are, or should be, passive recipients of information. However, we perhaps need to acknowledge that this is also a part of the current paradigm of dementia (and needs to be changed) – that “we”, the “professional experts”, hold the information, which by virtue of it being held by the experts, makes it “true”. So, people accept it.

The perils of being starved and accepting anything are especially concerning in education about dementia. People are starving for knowledge, so the danger can be that any education is good education. People with dementia and their care partners accept this knowledge, and apply it.

Even if it is education that refers to people living with dementia as “demented”, or labels them as aggressive, non-compliant, sun-downing, wandering, etc.


Even if it is education that supports a paradigm of dementia that sees people with dementia as problems, weird, different, no longer there. That labels their normal expressions and actions as medical problems, without considering why they are expressing themselves that way, what their needs are, and how they can proactively seek well-being.

Even if it is education that supports a paradigm of dementia that creates more disability than the disease itself.

They accept it, because they are starving.

When we know this, that people are starving and will accept anything, maybe it will encourage us to be really mindful of what we are giving people. Maybe it will remind us to listen more, and speak less. Maybe it will consider broadly what we are saying about dementia through our education, our services, even our research.

Yes, even research. Here is one small example. We provide education about dementia to a group of people, we test them to see whether they have learned what we taught them, and we find that they have. However, perhaps we have taught them a paradigm of dementia that is purely medical and not person-centered, one that does not include the perspectives of people with dementia. They are starving and will accept anything.

Is it better than a stick in the eye?

It is not born of ill intent. We have tried to support people in the way we thought was best. And because they accepted it, we assumed it was okay. But it is time to rethink this. People with dementia and their care partners are still starving. But they should not accept just anything. Let’s give them something better to accept. Maybe even more than accept, but enable and empower.

I would like to see us come to a place where everything we do to support people with dementia, including education, reflects person-centered values. To me, person-centered values honor who a person is and what is important to him or her, and are lived through interconnected relationships with others who know and honor what is important to a person.


Here are some preliminary questions that we can ask ourselves, from my perspective and experiences of hearing the voices of people living with dementia and their care partners, that help us to consider whether person-centered values are present (or absent).

This is not an exhaustive list, but these are some of the things that I think about when I look at information, articles, books, educational programs, presentations, movies, podcasts, blogs, products, supports, services, etc. related to dementia.

  • Does it include the perspective of the person living with dementia and those who support him or her? (Or, does it only include the professional perspective?)
  • Does it encourage us to ask for, and be curious about, the perspective of dementia?
  • Is there an emphasis on what is important to the person with dementia? (Or, does it include paternalistic views that suggest “we” know better than “them”?)
  • Is there an emphasis on who that person is, including the multidimensional aspects of who people are, not just their cognition?
  • Does it honor each person with dementia as an individual? (Or, does it categorize people by their weaknesses or disabilities? Does it generalize the experience of dementia to groups of people?)
  • Does it account for the importance of relationship and partnership?
  • Does it include well-being and its various domains?
  • Does it present a balanced view of dementia to include the more-than-medical experience of living with dementia?
  • Is there a focus on LIVING as the primary goal? (Rather than care and support being the goal in itself?)
  • Is the language person-centered per guidelines developed by the Dementia Action Alliance? (Or, does the language label people with dementia or their actions?)
  • When describing the actions and expressions of people with dementia, is there an attempt to try to understand how people act and why they act that way, honoring human expressions? (Or, does it medicalize what could be normal for a person, describe these actions and expressions as behavioral and psychological symptoms, or problem behaviors?)
  • Does it include strengths of people with dementia? Does it focus not just on what people can’t do, but what they can do?
  • Does it encourage autonomy of people with dementia?
  • Does it encourage us to see people with dementia as people who are experiencing the world differently, and doing their best? (Or, does it frame people with dementia as problems to be managed?)
  • What else??

As Spiderman’s Uncle Ben said, “With great power, comes great responsibility.”

The true superheroes are people living with dementia and their care partners. And we have both the power and the responsibility to do better than a stick in the eye for them.



The Black Cat (1895–1922) was an American literary magazine that specialized in short stories of an “unusual” nature.

Apparently, I have been up to mischief.

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.


The Faces of BPSD

I am really proud to be a part of a group of advocates who are campaigning to #BanBPSD. I have written about BPSD before. I am also not the only one – there are many profound and eloquent writings about the movement to think differently about dementia, including articles from people living with dementia, Kate Swaffer and Howard Gordon.

BPSD, “behavioral and psychological symptoms of dementia”, is a term that is used to describe the following “symptoms” that occur in people with dementia: agitation, aberrant motor behavior, anxiety, elation, irritability, depression, apathy, dis-inhibition, delusions, hallucinations, and sleep or appetite changes.

Thinking differently about dementia includes the need to rethink how we currently frame the expressions of people living with dementia through a primarily medical/clinical lens by labeling them as BPSD. It is important to note that, by definition, a symptom is a sign of abnormality. So, when we use the term BPSD we are immediately labeling the way a person is acting as abnormal, and thus problematic.


Although it is important to change the language of BPSD, perhaps it is more important to explore and rethink the current paradigm behind BPSD. This paradigm suggests that expressions of people with dementia are meaningless, intolerable, and entirely a manifestation of brain pathology rather than reflective of one’s lived experience in a complex world (coupled with brain changes that make it challenging to navigate).

The term BPSD does not recognize that these symptoms can also be normal human expressions.

The term BPSD does not reflect the possibility that expressions of people with dementia demonstrate the resilience of the human spirit.

The term BPSD does not allow for the understanding of “behaviors” as problem-solving rather than problem-making. Here is an example of what I mean by this.

I was in a nursing home, and a woman with dementia was sitting by the nurse station. She yelled, “COME HERE!” every time someone passed, so she yelled it almost all day.


I watched as people walked by her, trying to ignore her. People even went the other way around the nurse station to avoid her. A person stopped and took her hand and smiled at her. She stopped. I heard someone label it as “attention-seeking behavior”. In part, they were right. She wanted someone to SEE her. However, the way it was framed was wrong. She was solving her problem of wanting to be seen, rather than making a problem. To see this as only problem-making is reflective of a current paradigm that labels these expressions so that they are seen as abnormal, meaning they are different from the supposed “normal” behaviors of people who are not living with dementia.

An antidote to this paradigm is to see people with dementia as us. To not see people living with dementia as “other”. To try to see things from the perspective of persons living with dementia, rather than only our perspective. To understand that their brain changes influence how they see the world, and thus how they interact with it, but that this is true for all of us.

As we embark on this campaign, I hope to see open discussion that challenges us to build a new paradigm that supports our common goal of creating better lives for people with dementia. I hope that this paradigm is born of the multi-dimensional, experiential perspectives of people living with dementia, as they are our greatest teachers. With that in mind, I wanted to share some stories that perhaps begin to explain how I came to thinking differently about people living with dementia, how they express themselves, and how we might better support them.


We are coming back from Tallahassee, where “Hal”, a person living with dementia, his wife “June”, my colleague Peggy, and I had met with elected officials to create awareness of the experience of dementia and the need for funds and support. As we sit down to dinner in a crowded, noisy restaurant, Hal is visibly upset and frustrated as he attempts to read the menu. He rather crossly tells June to order for him. Peggy gently remarks that it was a long day and asks if he is tired. Hal acknowledges he is and shares that he often feels this way at the end of the day. In fact, he says, he is so tired at the end of the day that sometimes he is angry. He says he literally sees red. He yells at June sometimes during this time, and he feels terrible about it. But it feels like he is unraveling, after a long day of keeping it together.

Is this what we call “sundowning”? Or is this just a normal response to the extreme amount of energy it takes to focus and function when you are living with dementia?


I am facilitating an “early stage” support program. It is me and eight men living with dementia who have been meeting for over 5 years. They are in deep discussion about a court case I presented to them – specifically, was this person guilty? There is joking, seriousness, and storytelling. In the next room, their wives are meeting, and I later learn that they were talking about the lack of decision-making ability of their husbands. In particular, they were sharing how upset their husbands become when they tell them they can’t do something, or their anger when they help them. I reflect that my relationship with these men is based on facilitating what they can do, and that their wives are struggling instead with their losses. They do not see what I am able to see with their husbands.

Do people act differently when they are approached as if they are deficit? What it is like to have a spouse do everything for you after years of you doing things on your own? Is frustration, depression, anger a natural human reaction to losing control?


“Maria” is living with dementia. She tells me that she is no longer on autopilot anymore. That it is like she is driving a stick shift. Except she is really bad at driving a stick shift. People around her either tell her she is doing things wrong, or they try to do things for her. She tells me how she is frustrated and upset all the time. At herself. At others.

Would we not all feel extremely irritated if everything we did was difficult? If we could see in people’s eyes that we were failing at things we previously did with ease?

I am meeting with “Anna”, who is living with dementia. We are coming up with a plan for her to continue to do the things that are important to her. She shares that she does not leave the house very much anymore. She does not feel she can do anything “right” anymore. She is embarrassed. She does not want to be a burden to her family.

Is this apathy? Or is this a normal reaction to adjusting to difficult challenges that threaten your identity and autonomy?


I am walking through an assisted living community with the Director. We pass “Paul”, who is sitting on the couch and quietly reading a magazine. The Director says to him, “Paul, I heard you tried to cut open your window using those nail clippers. We had to take them away because you cannot do that.” Paul says, “WHAT????!!!! You are the one who took them? You filthy @#$%^&**.” The Director says to a nurse, “We need to get him a psych eval. That is not appropriate.” “That is not appropriate, Paul!” she calls to him.

Is Paul the combative one?

goodbye-2669587_1920My friend is telling me that her dad, who just moved into an assisted living community, is on the verge of getting kicked out. They say he is agitated and combative. I ask what happened. “They say he is angry all the time,” she says. “Did they give you an example of when he was angry?” I ask. “He wants to go home, and they told him he couldn’t. And he just lost it.”

Is this unreasonable behavior? Or, is this just unreasonable to the staff, because they don’t want him to leave? Is it abnormal to leave a building? Is it normal to have strangers tell you that you cannot leave a building?


I am working in a “memory care unit” in a nursing home. “Jack” just moved in. He is a world-renowned architect. He does not want to be there. He is repeatedly told that he is staying at a hotel for a while. Occasionally he orders room service from me. One day I hear him yelling. His care partner went into his room to help him shower. He is appalled that someone would dare come into his room and suggest that he needs help bathing. When the care partner insisted, he pushed her out of the room.

Is this combativeness? Or a normal reaction to a really strange hotel service?

I am picking up “Jeannie” from the Houlihan’s down the street. Jeannie lives in our memory care neighborhood and “escaped”. When she sees me, she smiles. I ask her how she is. “Just fine,” she says. “What a lovely day,” she remarks. It is perfect outside. Jeannie has grass stains on her jeans. She is an avid walker.

When it is beautiful outside, I like to “wander” too. Sometimes I like to sit on the grass and just be. I do not feel this is abnormal.

These are the faces of “BPSD”.

The more that I heard from people living with dementia, the more that I saw them as whole human beings, just like me, the more I became unable to see them as patients, abnormal, broken. I became unable to see their actions and expressions as abnormalities and problems, because I saw myself in them. For me, this was the starting point for thinking differently about dementia.

It’s Messy

I have a new friend. She is 93. I have been having coffee klatches with her. I find her fascinating. She has been telling me her story. There is nothing linear about her story. There is also nothing linear about the way she tells her story to me. As I listen to her, she takes me along on a tangled, curvy journey of her life. I feel the twists and turns in how she tells me about it.

As she is telling her story she goes back and forth between different languages, in a fluid and seemingly necessary way. I try to follow along as best I can. I don’t stop her because I feel this is the way she has to tell her story. Sometime her native language does better justice to it than her second language. I go along with her wherever she takes me, and then she always seems to conclude with some powerful, profound statement. Something that pulls it all together and nearly knocks me off my chair with the strength of it. It is a roller coaster for us both, and I hang on for the whole ride.

Maybe there is a deep lesson in this. Could my friend’s story of her life, as an entirely coherent yet messy narrative, be another way we might think about the experience of growing older? As a story that is not neat and clear and step-wise. But one that works together to make us who we are.

In many ways we like to think about growing older in a very linear way. By linear, I mean moving along in a single, straight line and having only one dimension (time). Like this chart.


Clearly, as time increases we grow older. So, it is easy to think of it as a linear process.

Evidence that we might think this way is in how we talk about growing older as being entirely tied to chronological age (e.g. 65+), assumptions that all older people have similar experiences, and one-size-fits-all policies, products, and services that are expected to meet everyone’s needs. You know, ageism in general.

However, there is nothing really linear about growing older. It is quite multi-dimensional, on every level. There can be great fluctuations. Up and down. Sideways. All over the place. Different for each person. More like this.


This resonates with me.

This also happens to be the way my brain works. I try to make it linear sometimes, to force it into a neat line. But it is all over the place. And I have learned to lean into it a bit. An idea comes, and I ride with it all over the place. Then sometimes I drop it for a while, and I pick up some other pieces that might go along with it, or might not. Then, I often need to rest. Let go of all the chaos that is happening in there. And then I come back to it, and see what fits together. And lots of time I have created something new. I have had to say goodbye to some things, but this is to make room for new things.

Hmm. When I have talked to fellow humans who are growing older, it seems like aging is more like this. A tangled, beautiful mess. And as I am growing older, I feel this to be true, particularly as a life transition.

When I think about it, we sometimes talk about what it is like to be an elder. But we don’t talk very often about the process of growing older, meaning the long journey from early adulthood through middle adulthood to elderhood. Certainly, we are all growing older from birth. But, in reality, most of us probably don’t feel that we are “aging” until middle adulthood. We are on this incredible journey of living and change. And it is messy.

Sometimes it seems as if the expectation is that one day, you magically wake up, and you are “old”. Some might think that this happens at an arbitrary age, like 75. Maybe some think it is when you are no longer “independent”.

But it does not happen that way. We GROW older, meaning there is a process. And from everything I hear from elders, the experience of growing older is a multi-dimensional process – complex, tangled, and messy. Just like life in general.


To be clear messy is not a “bad” thing. Maybe it is not “good” either. We might be tempted to qualify the experience of growing older as “good” or “bad”;  these linear terms do not adequately represent the experience.

If we consider that the process and experience of growing older is not linear, then perhaps we have to consider that the acceptance or embracing of growing older is also not linear.

We are a society of aging-deniers. “I’m not old.” “I will never be old.” “Young at heart.” Yet, we grow old. It seems that while we are busy denying something is happening, it is happening. And we miss the opportunity to really live it.

Maybe if we allowed ourselves some messiness in accepting growing older, we would be better equipped to accept rather than deny. Maybe even embrace growing older.

There is really no one way to grow old.

For me, growing older, and my relationship with it, is messy. As a revisionary gerontologist, I do believe that growing older is a beautiful process that brings many gifts. I believe it is the process of becoming oneself. And, it is also scary, frustrating, emotional, and not easy at times. This is okay.

On one hand, I think wrinkles and grey hair are beautiful. They show a life lived. On the other hand, I do not want grey hair right now. If you look in my medicine cabinet, you will see a nice balance of non-toxic moisturizers and face washes with glycolic acid and retinol (“youth-enhancing products”). This is my paradox of embracing growing older.


I look in the mirror and I see me. I see everything I have experienced to get me to this place. And I am in awe. But when I look at pictures of myself 10, 20, 30 years ago, I notice I look different now. And there is a little bit of grief for what has changed. There is also pride in who I am now and how my face and my body reflect a life lived.

I am being very honest about this. And I am somewhat ashamed at my paradox. After all, I am a revisionary gerontologist. Yet, perhaps this is part of the process of growing older. It does not happen overnight, nor does it happen in a linear, organized fashion.

The culture of aging in which we live is so strong, with its negative messages and unrealistic expectations. When I think about myself in it, it is like I am in a jungle, hacking my way through this maze. Of course the jungle is beautiful, I tell myself. Oh yes, that snake is just stunning.


I know I am supposed to love all of it, but I don’t. At least not all of the time. (Note: This metaphor is NOT comparing growing older to a snake. It is about seeing beauty in things, even natural things, that also make us afraid.)

Just like we don’t wake up one day and “become old”, I don’t think we wake up and really embrace growing older. This acceptance is messy too. Perhaps it is a necessary messiness. Where we have to hold these ideas in our brains, about what is important, what our physical selves mean to us, how we confront and live with changes in our bodies, our brains, our relationships . And let some things go. And embrace others.

What I don’t think we should do is force this messiness into a straight line. Just like it is probably not a good idea to tell anyone how to age, it is probably also not a good idea to tell anyone, or ourselves, the one correct way to embrace aging.

Yes, and.

The paradigm of growing older needs to change. We need to create a new narrative of growing older. Even if it is a messy one. Maybe this narrative addresses the possibilities and meaning we derive from the ups and downs of growing older. It promotes the gifts of growing older.

We need to have these ongoing conversations with each other. To resist the temptation to make things neat and organized and step-wise. To listen. To honor each of our lived experiences, both in terms of growing older and our acceptance or embracing of it. Maybe if we are willing to share our own messy stories with others, we become less afraid. And maybe there is comfort in knowing that everyone has their own tangled mess.




On Bullies and Bullying

“They are so mean to each other,” the administrator tells me.

“There is a group of them that says terrible things to some of the other residents.”

“They act like children – the way they fight with each other!”

“They are a bunch of bullies and should be ashamed of themselves – at their age!”

Do I believe that elders act this way?


Do people of any age sometimes act this way?


Why is my stomach hurting when I think about this topic?

Perhaps it is because no one likes a bully (or maybe I am remembering the time my childhood bully punched me in the stomach). But it is unsettling me and I’m not sure why yet. What I do know is that when I get this feeling in the pit of my stomach, I have to hold the topic or idea in front of me and work through it. Will you help me do this, for the sake of my stomach?

There has been a lot of attention lately about “elderly bullies”. My sense is that it might refer to a lot of different ways of acting, but in this context the term bully is usually used to describe older individuals who are mean to others – they might exclude them from activities, or generally treat others in an insulting, rude, or offensive way.  The term is usually reserved for actions from one elder to another, not necessarily from an elder to a professional, although this could also be the case.

More broadly, the term bullying is defined as “unwanted aggressive behavior” toward another. Many definitions also include that this behavior is repeated and that there is a power imbalance between the individuals.


Bullies have unfortunately been around forever. Most of the time, when we have talked about bullies, this has been centered around children. So, this is kind of new to consider bullying among elders. However, it is not necessarily a phenomenon for just the very young and old. People of any age bully each other. Have you heard of mean tweets?

I worry over how we are thinking about and addressing bullying in elders, and how this might be related to their age and the way we think about growing older.

I have more questions than answers. However, perhaps these questions will challenge us to think more deeply about bullying.

What are we considering bullying?

I’m not entirely clear on when and how we are using the term in the context of elders. What is actually happening to label it as bullying? If Mrs. Wilson one day yells at Mr. Gomez in their art class, because he is “going too slow” is this considered bullying? Or, is it just a rude way of Mrs. Wilson expressing her frustration? If a group of (older) women tell the “new person” she can’t sit with them for lunch, are they being bullies? Or, are these ladies exercising their rights as adults to choose who sits with them (even though this is not polite)?

If the people involved were younger, would we consider it bullying?

Is bullying in the eye of the beholder? Maybe it is defined by the reaction of the person being bullied. Does calling an interaction bullying really help us to understand the situation and look at it from different perspectives?

bully-655659_1920Is bullying even the right term?

I imagine we are using this term to reflect what we see in bullying among children, especially given recent, necessary attention to this painful experience. Perhaps there are similarities to what we see in bullying with children, but there are also big differences. Similarities might be the aggression, the sense of ganging up on an innocent person, and the bully demonstrating power and control.

The differences might be that with bullying in children, we are talking about humans who lack growth – they are developmentally immature. In other words, they don’t know much yet about how to interact in this world. They have little life experience. With bullying in elders, these are individuals who have extensive life experience and are developmentally mature adults.

Here is another major difference. With children, we, “the adults”, are in a position to guide them regarding how they should act. This is based on the premise that children do not know better. With elders, you could argue that we, “the adults”, do not need to guide them on how to act, as they are adults too. In fact, they could have more life experience than we do. So, it is adults telling other adults how to act. It is important to note that elders likely do know what it appropriate behavior, even if they are not acting in ways that we think appropriate.


When we talk about older people as bullies it attaches a label that is used primarily with children. It has the potential to suggest that this behavior is child-like, and that the people doing it are children. Yet, they are adults.

The term bullying might not adequately capture the complexities of the actions of an elder, especially when these actions are possibly the result of a lifetime of experiences, personality, the current environment, coping mechanisms, etc.

Could the way we see bullying be reflective of a paradigm of growing older?

There is pretty clear evidence that this unfortunate paradigm does exist. In this paradigm, older people:

  • Should always be nice.
  • Should always “behave”, i.e. do what people tell them to do, or don’t do what we don’t want them to do.
  • Need to fit into “our” way of doing things.
  • Are essentially like children and need to be managed.
  • Are seen as helpless.
  • Are not asked for their perspective.
  • Need to be protected and kept safe at all costs.

According to this paradigm, older people who are not nice, and do not behave the way we think they should, need “us” to tell “them” how to act.

Why would elders bully?

I imagine there are many reasons why elders are acting like bullies. Maybe they were always bullies. Maybe this is how they exert power and control over others because they feel powerless and are lacking control. Maybe they are living with deep emotional pain. Maybe that is how they respond to seeing others around them living with various cognitive and physical challenges, and it reflects their own fears. Maybe they are complex human beings.


Why are we so focused on bullying in elders (as opposed to other adults)?

It seems like most of our concern about bullying related to elders is with those living in long-term care (nursing homes, assisted living, continuing care retirement communities, etc.) or otherwise being served by a program like senior centers, adult day, etc. In other words, all situations in which “we”, the professional, have both a sense of responsibility for their security and well-being as well as sometimes a sense of control over their actions.

This is a unique situation when you consider that bullying happens at every age, and we are not always focused on addressing it in other situations like we are with elders. Bullying happens in the office, in PTA meetings, in book clubs. Yet we don’t often see anti-bullying programs in these situations, to manage the young-to-middle-aged adults. The difference with elders seems to be that we, the professionals, think we need to manage bullying. This leads me to a related, important question.

What is our responsibility, as professionals, to intervene in situations in which we see bullying in elders?

When do we step in? Certainly, do not want elders to be hurt by offensive, aggressive words and actions. We want to provide a sense of security. At the same time, we need to be mindful of paternalism and infantilizing elders, even if we feel they are acting immature.

What about people with dementia who are being treated terribly by their peers? What if they cannot defend themselves?

I suspect the answers to this are complex and dependent on many factors, including the level of harm done and the ability of the person being bullied to defend himself or herself. It seems like it also goes back to understanding what is actually happening in a situation, from various perspectives. Perhaps our responsibility goes beyond the specific bullying situation to our role in bigger issues like creating community, connection, and a different culture of aging and care. So…..

What are “we”, as professionals, doing to create a culture of bullying?

I know this is not easy. But we do need to think about this. Bear in mind, this is not about blaming ourselves. This is about being introspective and authentic, because we are caring people who want to do the right thing. Let’s consider…..

How do we inadvertently create a culture in which people might not value each other, or know each other, or be afraid of each other?

Do we send messages that some people are “better” than others by separating people based on their independence/dependence level or cognitive status?

Do we boss older people around? Tell them what they need to be doing? Tell them what they should not be doing?

Do you limit people’s autonomy so that they feel they need to control situations and others with aggression?


What are some things we can do to address this?

In the spirit of person-centeredness, understanding who people are and what matters to them, it is important to consider how we can have open, honest conversations surrounding bullying. I say “surrounding bullying” because I think it is more than what the term suggests, in terms of a focus only on the aggression, hate, rudeness, incivility, etc.

Although it is important to discuss what bullying means to people and how it should be addressed, it is more than that.

It is about the standards we create and uphold on how we treat each other in a community.

Maybe there are things we can do that can re-frame this conversation so that, rather than just focus on bullying, we focus on creating community, connection, purpose, acceptance, empathy, etc.

Perhaps we can even frame this conversation in terms of well-being – how we can explore what people need and create a culture that supports these needs in a very deliberate, proactive way. If we use the Domains of Well-Being from the Eden Alternative  as an example, how do we create a culture that supports identity, growth, autonomy, security, connectedness, meaning, and joy for each and every person we are serving. Would this create a bully-free zone?

This starts with the voices of elders. As we think more about what bullying means, elders, including the bullies themselves, need to be a part of this conversation. One way we can approach this conversation is by finding commonality in our shared experiences of feeling belittled, discriminated against, unacknowledged, ignored – things that likely each of us have experienced at some point in our lives, even bullies.