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.

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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.

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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.

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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.

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“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.

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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.”

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Jerry Maguire (1996); Image from http://www.imdb.com

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.

Resilience

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.

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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.

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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.

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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?

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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Mischief

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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.

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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.

LABEL BPSD

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.

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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.

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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?

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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?

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“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?

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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?

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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.

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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.

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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.

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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.

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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.

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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.

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https://www.everythingcrossstitch.com/my-mess-mrp-p45376.aspxc

 

 

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?

Yes.

Do people of any age sometimes act this way?

Yes.

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.

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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.

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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.

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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?

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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.

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What Do We Want to Say About Growing Older?

We don’t have the right language to address the experience of growing older and older people themselves. Here are some recent headlines I have come across:

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And…
The Glamorous Grandmas of Instagram (1)
It is interesting to me that, particularly in these examples, older people are characterized by a role that is not at all related to the point of these articles. If these articles were indeed about grandparenting, that would be appropriate. However, they are not.

How about these headlines:

NBA Greats Go Geriatric in Formulaic 'Uncle Drew'
The term geriatric refers to a branch of medicine that focuses on the health of people who have grown older. Neither of these headlines are related to medical situations, yet they use the term “geriatric”.

I think this is reflective of several things. One is our general discomfort of how to refer to older people. It is also indicative of a narrow view of growing older, as if the only way we can think about an older woman or an older man is as a grandma or grandpa. Or in the context of medical care. Perhaps it is also reflective of our need to categorize older people into nice little boxes. Or maybe it is reflective of how we really don’t know who older people are.

So what is the language we can use to talk about the experiences of growing older and who people are as they grow older? There have been numerous debates related to this over the years. Do we call people senior citizens? Older adults? Seniors? Elders? Retirees?

The conversations have mostly been at this somewhat superficial, yet necessary, level. However, in order to really find the right language, I think we need to deepen this conversation. Because it is not just about what words we use to describe a group of older people. It is considering what we are wanting to say about growing older. The very fact that we struggle with what to call people who have grown older is evidence of a conflict. And although I think some of this conflict is driven by wanting to be respectful to elders, and not offending people, there is something deeper that we do not really talk about all that much.

There is a tension or paradox in the language we use that reflects tension in our paradigm about the experience of growing older and how we see older people.

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On one hand we want to acknowledge elders or elderhood as something special, unique, different. We want to honor elders as important members of our community, with life experiences to be valued. On the other hand we don’t want to stereotype or group people just based on their age. We don’t want to draw boxes around them so that they are separated from us, or seen as “other”. However, the very fact that we yearn to give this group of people a categorical name is evidence that we DO think of them as different than other (younger) people.

Should we think of them differently? How?

On one hand we want to acknowledge the unique experience of growing older, perhaps by specifically connecting people’s ages with what they are doing or saying. On the other hand, does it matter to distinguish age when we talk about how people are living? Does that abnormalize aging?

I wonder how these headlines above might have been different. Maybe it should simply be “Glamorous Women of Instagram, at Any Age.” We seem to be uncomfortable saying “61-year old MAN” vs “61-year old GRANDPA”. And maybe it seems important to reference a person’s age. Perhaps this is because we want to highlight an achievement and make a point about their age in attaining this achievement. But then it is as if we are saying, “Despite this woman being 65, she is fashionable! Can you believe it!” or “Despite this man being 61, he is fit! That is crazy!” We wouldn’t expect to see a headline that says, “Glamorous Teenagers of Instagram” or “Handsome 25-year-old Man Models at Milan Fashion Week”. Is that because this is considered “normal”?

On one hand we want to celebrate elderhood. On the other hand, we want to see people not for their age but for who they are as individuals.

There is a paradox in this, a tension that I think is really important to consider and talk about. How do we strike a balance in which we are honoring people for their life experience, and considering their unique place in our life span, but also acknowledging they are not just their age. How do we celebrate older people for who they are as secondary to their age, not despite their age?

Perhaps we need to get to a point in which we don’t need to be surprised that an older person is glamorous or strong. Certainly it is important to show positive examples of growing older, and I do think this is part of what will change the culture of growing older. Yet, I also think we need to be careful and thoughtful about not suggesting that there is an archetype to growing older. You don’t need to be glamorous or strong to be great. But good for you if you are! It really is a perplexing challenge.

When we relegate people to categories based on their age alone, whether we call it “seniors” or “elders” or “older adults”, there is the danger of attributing qualities to them as a group, rather than as individuals. Whether those qualities are negative or positive. Even when we call people “elders” (which is regarded positively as a respectful term), this might evoke an image – perhaps an attribution to this group that they are all similarly wise or sage. I do believe that elders are wise, because of their life experiences, and that growing older has the potential to transform your view of yourself, others, and the world. However, this likely looks different for each person. Their life experiences serve them in different, unique ways. There are elders who are perhaps “wiser” than others, even though we might ascribe this quality universally to all elders as a category. In this case it is a positive quality, but it does make you think about how categorization is serving us, and the implications for generalizing a group of people based on age alone.

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Certainly, we do this with other age groups, but I think it is different. We might generalize about teenagers or millennials, for example. But with older people it seems so much deeper, and we really struggle to see people as individuals outside of these group identities, these boxes into which we put them.

It is not just about our insufficient language for the experience of growing older or people who are growing older. We also don’t have the language for how we support each other as we grow older. I mean the products, services – the system of “care”. Much of the language we use is at worst ageist, paternalistic, and medical. At best, it simply does not adequately characterize a way of supporting people as they grow older (or grow with dementia) that is enabling rather than disabling, dignified, and well…normal. None of this language is adequate to encapsulate unique, diverse human beings who are not necessarily different because they are older, but because they are multidimensional individuals whose dimensions are even more developed through life experience. Who are living life, like we are all trying to do.

We have developed an entire “system” of supports and services for older people whose membership to this group is based on age alone. There really has been very little attention to the individuality of people as they grow older.

I (2)How can we differently present and describe supports and services for people as they grow older? Especially in a way that walks this fine line of honoring life experience and membership in a unique stage of life, while acknowledging individuality and normalcy. That does not simplify people into categories like “grandma” or “geriatric”.

Here is a small example that came into my head. I was driving back from the grocery store and I saw a private bus whose passengers were all elders. It was the type of bus that is used by a senior center or care community. As I watched them I thought about how it must be so weird to be on this bus that seemingly advertises that you are all 1) old and 2) not “able” to drive. This bus is so reflective of a categorization of people based on age that suggests all these people are the same. In a way the bus is emblematic of your “dependence”. And yet, how untrue that is. That bus could be bringing everyone somewhere very fun. These individuals could be returning from a civic project in which they volunteered their time. They might have been working on the community garden. Or, helping people register to vote. The reasons for people being on this bus are infinite. But we might just see a bus of old people.

You might be thinking, what about school buses? School buses carry a group of people of the same age. Yet, there is a totally different connotation than a bus of older people. Other than seeing the people on a school bus as students, I don’t think we make assumptions about them as a whole.

So, how could we present this bus of older people in a different way? Could we use a little bit of humor in how we think about and frame these things? What if the bus had signage that said, “On this bus there is __ years of life experience. So be careful!” Or, “The people on this bus raised __ children, served in __ wars, and have been there, seen that.” Or, “Here is some advice from riders of this bus, “Slow down. Pay Attention. Be nice.” Something authentic, and maybe fun, that could change this tragic discourse of “geriatric people” on a bus to seeing them as multi-dimensional human beings. Just like us. Yet different.

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Unraveling the Paradigm: The Medicalization of Growing Older

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Paradigm: A system of beliefs, ideas, values, and habits that is a way of thinking about the real world.

There is a paradigm of growing older. It is maybe hard to see at first. Because we are so used to it. But once you are aware of it, you see it is everywhere. It is pervasive.

You also begin to see it is not one thing. The current paradigm of aging includes a number of different beliefs, ideas, values, and habits.  (By the way, there is also a paradigm of dementia, but we will talk about that at another time. Don’t worry.)

You might be thinking, “So what? Why are you being so fancy, Sonya? Paradigms live out there somewhere. Let’s talk about the real world. Stop being so nerdy.”

I think talking about the paradigm is important. Because this paradigm, which by definition is widely accepted, directly influences everything we do to, and for, people as they grow older. It is behind nearly all the products, services, and systems we have developed to support people who are growing older. It influences education, policy, research, and practice. It drives our attitudes towards growing older, and elders themselves. It runs wide and deep.

ribbon-2090126_1920And, I believe the paradigm needs to change. It is based on erroneous assumptions about growing older. It is not built from the individual lived experiences of people growing older. And it is not serving people well as they grow older.

“What is this paradigm you speak of?” you might be asking. “What does it look like?”

I can’t say I have identified every belief, idea, value, and habit that is a part of this paradigm of growing older. But I keep seeing evidence of it. Maybe we can unravel it, because it is a tangled mess.

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And if we take it apart and look at the pieces, maybe we can put it back together in a different way, with different pieces – a new paradigm.

Will you indulge me? Don’t worry, I am only going to unravel one piece at a time. I know you are very busy people and have things to do.

Today, I would like to talk about the part of the paradigm that is the “medicalization of aging”.

Sometimes this has been framed as discussions about whether aging is a disease. Although I am not going to discuss right now the details of this ongoing discussion, the fact that this still is an ongoing topic is reflective of a continued narrow view of growing older from a purely medical lens. I will just say that seeing aging as a disease is very concerning. The definition of a disease is essentially an abnormality, so that suggests that people who are growing older are abnormal. Since every person who is privileged to keep living grows older, I’m not sure then what normal means. Also, if the life stage of elderhood is a disease, would that mean the other stages of life are diseases too? While those who interact with teenagers might think adolescence is indeed a disease, I’m not really sure how this type of thinking will help anybody. Don’t get me started.

But it is more than debating whether aging is a disease. Rather than focus on this narrow discussion, I would like to share some thoughts more broadly about how the experience of growing older is often seen mostly from a medical lens, and thus has become over-medicalized.

To me, the medicalization of aging means primarily viewing aging as a medical problem, defining the experiences and challenges of aging in medical terms, and thus seeing “solutions” also as primarily medical. It neglects the multidimensional, individual experience of growing older. It is not seeing the whole picture.

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The paradigm of the medicalization of aging tells us that older people are primarily “patients”. We create “interventions” to “treat” them.  The focus is on their disabilities. While this is especially true for elders living in long-term care communities, or elders living with dementia, I see the medical lens being used for all people growing older. This has been thought and written about for several years by many smart people.  For me, I started realizing how deep the paradigm was when I saw more and more evidence of the medicalization of aging

Here is some evidence.

  • Reports on growing older in the United States that focus mainly on disability rates, or even health status.
  • Journal articles in which elders are categorized by their physical disabilities – “frail” versus “well” elders. Frailty is indeed considered a medical condition. “Normal aging” is the absence of frailty.
  • The segregation of elders in residential care determined by their functional, health, or disease status.
  • The reality that most people, when they hear I am a gerontologist, assume I am a medical professional. As if the study of aging is only medical.
  • When I talk to elders, and ask them what they want to discuss related to growing older, almost all of the topics are focused on medical topics or how to navigate the medical system. While this is certainly a concern for people as they grow older could it also be evidence of the internalized view of aging as a medical problem?
  • I am on Facebook and a see a sweet video about farm animals visiting elders living in a nursing home. They call it “farm therapy”. In regular life, people petting farm animals would just call it “petting farm animals”. When we refer to everything a older person does as “therapy” we are again seeing that person in medical terms. Not as a whole person who might just enjoy petting farm animals, but a sick person who interacts with the world through defined interventions.
  • The development of “interventions” to address nutrition, exercise, loneliness, social activities, recreation, etc. We generally do not use this medical language in other parts of the lifespan. Outside of research and actual medical interactions, we don’t refer to the meals of 4 year olds as “nutritional interventions”. We don’t generally talk about “behavioral interventions” for college students. We don’t require research, a.k.a “an evidence base”, to determine what type of hobby a 44-year old woman should embrace and what would benefit her.

Is this partially because older people may experience health and medical challenges as they grow older? Maybe. However, these terms are not just used in the context of medical situations. They also might be interpreted to mean that aging IS a medical situation. That would be why we need interventions, therapies, and evidence base to support elders.

To be clear, there are aspects of growing older that are medical. One might even argue that there are aspects of growing older that are more medical than other times in the life span. People get sick. Joints hurt. People might experience cognitive changes. However, the experience of growing older is certainly more than physiological changes, and is much, much more than medical. The changes we experience as we grow older are not necessarily medical problems. People are more than medical beings.

Am I saying that medical treatments are bad? No. That medicine is bad. No. That medical professionals are bad. No. What am I saying? Why is this a problem?

I am saying that only seeing aging through a medical lens limits the possibilities of aging and distracts us from the many things that aging means for each of us. To think of growing older with just a medical lens diminishes all the other aspects of living. It might neglect the importance of, and attention to, non-medical needs such as connectedness, identity, autonomy, growth, security, joy, purpose, – overall well-being (thank you, Eden Alternative ).

When we think of growing older as a medical problem, we might become over-reliant on medical solutions. Sometimes at the expense of quality of life. Or we might start “prescribing” things for elders that are non-medical, but we medicalize them anyway. Then everyday activities become protocols to be followed – we lose what matters to people.

Reframing aging will open doors for us to look for new ways to support people so that they can LIVE as they grow older and grow with dementia.

OPEN DOORWe need a paradigm shift.

To get back to being nerdy, the term “paradigm shift” was actually coined by philosopher Thomas Kuhn. He used the term to describe a shift in scientific thinking, but it is very applicable to phenomena outside science. According to Kuhn, a paradigm shift occurs when enough things start to happen that are at odds with the paradigm that currently exists.

It is important to note that Kuhn does not suggest this paradigm shift is easy, or seamless. He describes a state of crisis as people believing a new paradigm are at odds with the old paradigm. This process of shifting from one paradigm to another is also called a revolution. And that is what I believe we need to have. In order to have the revolution, to change the paradigm, we need to be clear on what the paradigm is. Because sometimes paradigms are so deeply embedded that we don’t even notice them. So we need to take notice. And think really deeply about the parts of this paradigm that are really not serving us well, if our goal is to grow older with meaning and well-being. And LIVE.

More unraveling to come soon…..

There Is No Place Like Home, Unless You Feel Homeless There

Last September, my husband and I moved from Norfolk, our home of over 10 years, to Arlington. We loved our community in Norfolk. There were our friends and neighbors, who were very much a part of our daily lives. The neighborhood in which we lived was tight-knit and inclusive. People knew me. When you passed someone on the sidewalk you always said “hello” and they said “hello” back. You would recognize people in the grocery store. When our house was struck by lightning, and the fire trucks arrived, multiple neighbors came running to make sure we were okay (they were particularly concerned that Blue the Elder dog was safe). There was a sense of community pride. We were involved in a number of community groups. I knew the people who were homeless. And they were a part of the community. We belonged to each other.

In Arlington we live in a lovely home and a lovely neighborhood with lovely people.

Last month we returned to Norfolk for a vacation. We rented a beach house so we could enjoy the Chesapeake Bay and made regular visits to our old neighborhood to see our friends. It was wonderful, and it felt like home. Yet, it wasn’t home anymore. We loved being there, and it was so comfortable, yet it was also bittersweet. Because we didn’t live there anymore.

This perplexed me. I didn’t feel like I belonged there anymore. And I don’t feel like I belong in Arlington either. I feel… homeless.vintage-1722325_1920.jpgSo, being a Revisionary Gerontologist, it got me thinking. A large part of my work with nursing homes and assisted living communities has been exploring how to create home and community for people living in long-term care. This is a fundamental aspect of culture change.

“Culture change” is the common name given to the national movement for the transformation of older adult services, based on person-directed values and practices where the voices of elders and those working most closely with them are solicited, respected, and honored. Core person-directed values are relationship, choice, dignity, respect, self-determination, and purposeful living. (From Pioneer Network, http://www.pioneernetwork.net)

A key goal of culture change is for elders to feel “at home” wherever they live.

Yet, how often, and how much, do elders in nursing homes and other types of care communities feel that they do not belong? That they are homeless?

The comparison of living in a nursing home with feeling homeless is not a new idea. Judith Carboni published an article called “Homelessness Among the Institutionalized Elderly” in the Journal of Gerontological Nursing in 1990. Yes, you read that correctly. 1990. We have been talking about this, and working on this, for at least 28 years. And, unfortunately, this article is as relevant today as it was 28 years ago.

Based on her literature review, observations, and interviews Ms. Carboni suggested that people living in nursing homes experience feelings of homelessness, even though they are “sheltered”. It is important to note that homelessness is more than not feeling “at home”. It is an emotionally “painful experience that brings about deep, existential despair”.

She observed, “The closer individuals move to the state of homelessness, the less able they are to find meaning in the experience and consequently become more disorganized and confused… Because individuals are no longer able to integrate experiences and form them into meaningful wholes, they are left adrift in a strange and frightening world without meaning.”vintage-1722329_1920This experience of homelessness evokes “meanings of non-personhood, disconnectedness, no journey, no boundaries, powerlessness/dependence, insecurity/ uncertainty, and meaningless space”.

There are several things that are very interesting, and devastatingly sad, about these findings. Clearly it brings to light how incredibly detrimental feelings of homelessness might be to individuals living in nursing homes. And we likely are not paying attention to it.

There are all sorts of outcomes we measure in nursing homes to evaluate quality of care and life. However, I do not think we really give due diligence to how many people are experiencing non-personhood, disconnectedness, no journey, no boundaries, powerlessness/dependence, insecurity/uncertainty, and meaningless space. What would this look like? It makes me wonder about elders I have seen in nursing homes who seem to be “settling in just fine” because they are not voicing complaints, sadness, or loneliness. But are they feeling homeless?

Interestingly, Ms. Carboni found that a key coping strategy for elders living in nursing homes was what she called “pretending”. What does pretending look like?

  • Living in the past – in their minds, returning to where they have felt at home in the past
  • Keeping the secret – outwardly acknowledging this is their home, but inside denying this is their home
  • Distancing –  not getting involved with other elders to avoid seeing other people’s sense of homelessness that mirrors and reinforces their own homelessness
  • Surrendering – Giving up and feeling there is no choice – “what can I do?

Are elders “settling in just fine”? Or, are they great pretenders?

Another thing I find interesting is that a result of homelessness is disorganization and confusion. While we might (misguidedly) attribute disorganization and confusion to being old, or having dementia, how much of this is related to feelings of homelessness? vintage-1723763_1920.jpgEven more concerning is this ongoing theme in which people living in nursing homes, who feel homeless, who do not feel they belong, lack meaning. That might be the case in spite of the many well-intentioned ways we attempt to provide opportunities for engagement (in other words, recreational programs, visiting, socializing, etc.). Perhaps this is because we do not always know what is important to people. Or we make assumptions about what people need or what is best for them. It is important to note that “belonging” means many different things for people, and it is not always about social connections. For some people, they can feel that they belong, yet be by themselves, happily reading a book. This gives them meaning.

To take that a step further, if you are living in a nursing home, and are feeling homeless and lack meaning, how might you act? Maybe you would try to leave. Maybe you would stay in your room. Maybe you would allow yourself to be conditioned by the routines around you, because they don’t really mean anything to you anyway.fairytale-1735412_1920.jpgWhen we compare living in a nursing home to homelessness, and really understand the lived experience of homelessness, we see that homelessness is not as much tied to having a physical place to live as it is to the meaning we assign to where we live. In other words, you can live in a lovely home (like me), or a beautiful nursing home, assisted living community, or 55+ community, and still feel homeless.

There is also the great likelihood that feelings of homelessness are not just experienced by elders in nursing homes. Maybe people growing older or growing with dementia feel this way regardless of where they live – maybe they feel like they don’t belong in our society.fairytale-1735327_1920.jpgI see these themes – not belonging, not being seen – quite frequently, in nursing homes and assisted living, and in our own neighborhoods. Quite honestly, I see them so often that they are the norm. We have got to do better. But how.

Perhaps one way to consider this is to think less about the problems (e.g. time, money, resources, regulations, etc.), and think more about the possibilities. Because this, in fact, is about building community.

Peter Block, in one of my favorite books, “Community: The Structure of Belonging” says:

“Community as used here is about the experience of belonging. We are in community each time we find a place where we belong. The word belong has two meanings. First and foremost, to belong is to be related to and a part of something. It is membership, the experience of being at home in the broadest sense of the phrase. It is the opposite of thinking that wherever I am, I would be better off somewhere else. The opposite of belonging is to feel isolated and always (all ways) on the margin, an outsider. To belong is to know, even in the middle of the night, that I am among friends.”

How can we facilitate creating communities where elders and people living with dementia feel they BELONG?

How can we create communities where people feel they are a PART OF SOMETHING?

How can we create communities in which elders and people living with dementia KNOW THEY ARE AMONG FRIENDS?

Instead of building homes in which people feel homeless, let’s build communities where people belong, are a part of something, and know they are amongst friends. I have felt these things in a community. And I hope you have too. It is possible. Let’s make it possible for people growing older or growing with dementia. Because we are not building communities for THEM. We are building OUR community, in which we all live.