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.

And, 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.

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.

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.

We 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…..

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.So, 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.”This 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? Even 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.When 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.I 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.

 

 

A few months ago I went to the funeral of my friend, Reed. Reed was five years old.

There are no words to describe the pain and sadness of this loss for his family and friends.

To honor his life, I wanted to share a few things about Reed.

Reed was beautiful, with curly, crazy hair, an infectious smile, and a curious spirit. He loved pushing things like toy trucks, or carts. He had a great wiggle when he got excited. He was so happy when he was swimming.

Reed also lived with Fragile X Syndrome, a genetic condition that causes a range of developmental challenges.

I knew Reed from when he was a little baby. My husband and I are friends with his parents. We would often go to their house in the evenings, and the grownups would drink wine, play games, and talk for hours. But we got to be with Reed until he went to bed. I held him and played with him.

I remember how mesmerized I was with his huge eyes, which watched you intently. It made me feel that there was something almost divine in that baby body; his eyes were full of such expression and wisdom.

One day when Reed was about two, I was finishing a run in our neighborhood, and passed their house. Reed’s mom was on the front steps, waiting for Reed’s bus to drop him off. I stopped and waited with her. When the bus pulled up, she went to the bus and retrieved him from his seat.

Reed was so tired and laid his head on her shoulders as she carried him towards me. His eyes were sleepy and serene. When she got close to me, Reed suddenly put out his arms to me, and hopped onto me, laying his sweet little head on my shoulder. Reed’s mom and I smiled and laughed in surprise.

My heart swelled. It felt so nice to be wanted by Reed. I was so glad I could provide a shoulder for him. It was one of those pure moments when you feel so connected. Like you both belong.

One Halloween, Reed and his family came by to trick or treat. I was dressed as Miss Piggy. He took one look at me, and yelled, “OFF. OFF. OFF” and grabbed at my blond wig. He wanted to see me, not Miss Piggy. It felt nice to be seen.

Although there is no one like Reed, there are souls like him in our midst. We just have to see them. See each other.

“Discover the gift of who each person is, and then invite people to live in each other’s hearts…. And then hope that people will not only discover their gift and their own goodness but that they’ll live out of that place with each other….”

– Father Greg Boyle, author of Tattoos on the Heart and Barking to the Choir

There is so much we can learn about each other. It makes us better for ourselves and each other.

Perhaps we can try living so that we assume that every person we meet teaches us something. That they know something we do not know, but can tell us if we listen. We can see this in the eyes of every person we meet, people of every age, background, life situation, or diagnosis.

Reed’s mom shared this amazing video with me a few years ago. To me, this is the definition of pure joy.

I hope it brings you joy, and thank you, Reed, for the joy and lessons you have brought to all of us.