De-scribing Dementia

A large part of my work is changing the way we think about dementia. In order to change our thinking, we need to question what we already “know”.

When we see information about dementia, particularly if it is from a popular source, we might assume that it is “the answer”. Yet, we need to also keep in mind that our knowledge of dementia is constantly evolving, dementia is complex, and the way we attempt to describe what dementia is might not be adequate.

It is time that we question how we explain dementia, especially on public sources of information that are trusted. We need to consider that the information out there might be misleading, is not fully explained, might only provide one perspective, usually a medical one, and is not person-centered.

Maybe you are questioning what I mean by questioning how we explain dementia. I am glad you are questioning! We need to question.

Let me start by clarifying that when I say we need to question how we explain dementia, I mean both how we describe dementia overall as well as its causes, like Alzheimer’s. For purposes of simplicity I am going to just use the term “dementia” in this article. Just know I mean dementia and its causes.

There is already a long history of confusion about how we explain dementia, especially related to the difference between dementia and its causes. Most information sources will now make this distinction, which certainly helps. However, I am going deeper and talking more about the way we describe dementia and its causes– What is dementia? What is Alzheimer’s? What happens when a person has dementia? What are the changes a person is experiencing?

It is important to rethink how we describe dementia because the way we talk about dementia, even in its basic description, sets the stage for how we think about people with dementia and how we support them.

What are some examples of descriptions about dementia that we need to rethink?

If you look up “What is dementia” (or “What is Alzheimer’s) usually a description will include information on signs and symptoms. Typically, a list will include things like memory loss and confusion. And then it will also include things like personality changes, inappropriate behavior, agitation, paranoia, and hallucinations.

This is, at minimum, confusing. Maybe even misleading or not entirely accurate. What do I mean?

Let’s start with the word “symptom”. Part of the challenge in how we describe dementia is in using the word symptom to describe what we see in people with dementia. Although it is a medical term the word symptom itself is pretty open to interpretation. It is generally defined as subjective evidence of disease or a medical condition. It is thought to be something experienced, as opposed to observed. However, in everyday use, symptoms might be considered anything noticed about (or by) a person that indicates “something is wrong with them”.

It is confusing to use the term symptom when explaining dementia.  It allows us to call anything that a person with dementia experiences, or is observed by others, a symptom. Even if that thing is a normal human behavior. Even if it is not really physiologically connected to a change in the brain.

Sometimes I find it helpful to think about other medical conditions, and how we treat them, when I am trying to understand something better in the dementia world. So let’s use the example of migraines. I get migraines. When I have a migraine, I would say my symptoms are head pain, visual disturbances, vomiting, stomach irritation, etc.. I probably wouldn’t report as symptoms the other things that I am also perhaps experiencing – irritability, self-isolation, apathy, avoidance of social interaction.

It would be confusing to say that symptoms of migraines include irritability, self-isolation, etc. Right?

They could be related to my migraine, because when you feel that bad you are irritable, self-isolating, and avoiding social interaction. But they are not directly related to the physiology of migraines. In fact, they might be related to many other things, some of which might not be about my migraine at all. As a symptom, how would irritability help diagnose my migraines? It is not uniquely symptomatic of migraines.

Back to dementia.

Similarly, having “agitation” or showing “paranoia” may or may not be related to dementia, or might have many other explanations. Yet, they are described as symptoms.

Confusing.

It is debatable that these symptoms are directly related to changes in the brain that are the result of brain injury from the various causes of dementia. . On the other hand, memory challenges are more clearly connected to changes in the brain. Yet, when we hear all of these things described as symptoms, one assumes that they are all direct medical manifestations of dementia. Doesn’t it seem confusing to describe dementia in a way that puts all the things you are experiencing in the one bucket of “symptoms”?

What is a symptom, really? Is this a meaningful way of describing dementia? Is it helpful to say a symptom of dementia is paranoia or suspicion of others? Wouldn’t it be more helpful and, perhaps accurate, to explain that a person with dementia might accuse family members of stealing or lying, and that this is because a person is trying to make sense of the world around him or her. This is not a medical symptom, but something that might happen.

Wouldn’t it be more helpful to actually describe the cognitive changes that a person might experience? That in order to be diagnosed with a neurocognitive disorder a person will experience challenges in these areas of cognition, and that this looks different for each person? Do we need to frame things as symptoms?

As we get deeper into the descriptions of dementia, we then also need to rethink how we talk about some of specific “symptoms” themselves.

Like “personality changes” as a “symptom” of dementia.

First, what does “personality changes” really mean? We all act differently in different situations and sometimes we change. Personality psychology has long found that personality is about BOTH stability and change. In other words, some aspects of our personality change throughout life, and some do not. We go through situations that might require or influence personality change, and then we also have periods of personality stability. Personality is not set in stone for any individual. Saying personality change is a symptom of dementia suggests it is pathological. This is confusing.

Second, couldn’t there be many reasons why a person is acting differently, particularly if they are experiencing cognitive changes? If I am having difficulty making sense of things because parts of my brain are working differently, due to a disease or condition or injury, isn’t it possible that I might act differently? Perhaps to an outside person, it seems that my personality has changed. But is this a direct cause of dementia? Or is this a normal human response and maybe adaptation to cognitive changes?

Certainly, there are parts of the brain affected by types of dementia that might directly influence how we are acting. Maybe the part of our brain that helps regulate our emotional responses, such as anger, is impacted. So, it might be easier in some experiences of dementia for a person to get angry. But this could the same for my migraines. Perhaps the pain experience of migraines results in a lessened ability to regulate my emotional response of anger, so that when my husband walks into my nice, dark room where I am recovering from my migraine, and turns on the light, forgetting I am in there, I yell at him in anger. That would be a personality change for me. But not pathological.

What difference does this make?

Here is what I see happen.

A person goes to the internet to find information on dementia as she is worried about her husband. She looks at the symptoms and is alarmed because he is definitely having difficulty concentrating and remembering things. And, then, she sees personality changes as a symptom of dementia. She thinks back to last weekend, when they were in church. Her husband is an usher and in the middle of the service he became very confused about what he was supposed to do. He did something incorrectly, and it actually stopped the service. She was embarrassed and tried to help him. He became very angry at her and yelled at her to sit down and get out of his way.

Personality change! Yes, that is what her husband is showing.

Her husband is diagnosed with vascular dementia. His cognition gets worse, and she continues to care for him. She notices that there are other things about his personality that have changed. He doesn’t want to socialize at all anymore. He blames her for things she hasn’t done. These are all medical symptoms of dementia, she thinks. She begins to believe that the husband she knew is not there anymore. Everything he is and does is dementia. This man is a stranger, and her husband is gone. She stops doing things with him, socializing with him, and just focuses on his basic physical needs. Her husband begins to “resist” her care. He tries to push her away one day when she tries to give him a bath he said he did want. This supports her belief that this is not her husband anymore.

No description has explained to her that another way of looking at her husband’s actions (“symptoms”) is that he is likely frustrated, scared, angry, embarrassed, sad. That there are reasons behind his actions, including cognitive changes that cause him to experience things differently. That maybe it is not so much that he is no longer there, or the person he was is gone, but that he is adapting to his changes. Just like we all do. Maybe he is an evolving version of himself, like we all are.

What would their experience be like, how would it be different, if she did not read about personality changes being a symptom of dementia?

We need to be better in how we explain dementia. It is the words we use, and it is also the meaning they hold. We need to consider how to apply the paradigm shift of person-centered thinking to a definition of dementia.

Here are just a few ways we can do better in explaining dementia:

  • Consider what we mean by “symptoms” and the possibility of an alternate term.
  • Avoid pathologizing normal behaviors.
  • Differentiate between core cognitive challenges of dementia (such as challenges with memory, attention, executive function, etc.) and other experiences of dementia that could be reactions, adaptations, or have alternative explanations.
  • Describe the variability and individuality of a range of cognitive challenges, being clear that each person experiences dementia differently, depending on many different factors, including the cause of dementia.
  • Include the emotional component of living with dementia and what that might look like.
  • Use an experiential lens in defining dementia so that the definition includes not just what others observe in people with dementia, but what people with dementia themselves experience. For example, an experiential definition of dementia might include something like: “People living with dementia report feelings of frustration, embarrassment, sadness, anxiety, etc. as they cope and adjust. People around individuals with dementia might feel as if they are acting differently than they typically do. Each person with dementia is adapting in their own way to the challenges of dementia and we can support them to live well.”

A new way of explaining dementia would reflect that a person can experience cognitive challenges AND be whole.

So, what do we do? Our voices need to be heard. Question the descriptions of dementia that are out there. These explanations of dementia reflect the paradigm of dementia that exists – one in which we stigmatize, label, other, and pathologize people with dementia. This paradigm is not working. We need a new one. And it starts with a new way of de-scribing dementia.

The System is Broken and It Needs a New Paradigm

I think we agree that nursing homes* need to change.

Right?

It seems that whenever I read something about nursing homes, and what we have learned from COVID, this message prevails.

I can’t stop thinking about all the people who right now are living and working in nursing homes. I cannot give up on them. They deserve better.

Yet. How do we move forward? How do we fix it?

We can agree that there are many elements of this system that are problematic. The reimbursement system is not built to adequately care for people with multiple chronic conditions. It definitely does not adequately care for people living with dementia. There is a serious workforce crisis, and that extends to the reality that we do not sufficiently pay direct care professionals. There is a regulatory system that is confusing and overwhelming to people, and paradoxically it is at times over-enforced and under-enforced. Some nursing homes get citations for leaving bananas out too long, and some homes that are actively neglecting and abusing people have minimal repercussions.

Okay. Agreed?

However, when we talk about fixing nursing homes, there are other problematic things that I hear less about. And they are related to the paradigms that surround nursing homes.

What do I mean by paradigm? A system of beliefs, ideas, values, and habits that is a way of thinking about the real world. These beliefs, ideas, values, and habits are at the root of why nursing homes are the way they are.

What are some of these problematic paradigms?

  • The paradigm in nursing homes that the best we can do is maintain people.
  • That people are too sick to have meaning and purpose.
  • It is not the job of nursing homes to create opportunities for meaning and purpose.
  • The paradigm that, for older people in nursing homes, well-being is really defined by the absence of things like hospitalization, pressure ulcers, “challenging behaviors” and not the presence of things like joy, meaning, etc.
  • There is the paradigm of safety at all costs, which is maybe partly driven by liability, but is likely also about our discomfort with older people making “bad decisions” even if it is want they want.
  • There is the paradigm in which the “experts”, professionals, and policy drive how the system looks and acts, not the people who are supported by the system.
  • There is the paradigm of feeling the pressure to only do those things for which there is an “evidence base” but also doing plenty of things for which there is no evidence base, sometimes at the expense for what might be helpful to an individual.
  • There is the paradigm of focusing more on keeping people alive, but less on how they are living.

So, as we keep having these important, necessary discussions about how nursing homes have to change, I plead that we keep some of these other problematic, more paradigm-y things in mind. No, more than that. Can we try to lead with a NEW paradigm? Truly build a system that is driven by a new paradigm.

Because fixing a system that keeps the old paradigm will not work.

Case in point, we have been trying to sneak a new paradigm, based on person-centered values, into the existing system for so many years now. But it has been hard to really grow this new paradigm in the current system. That is because it is not at the root of the system.  If we want to fix nursing homes we need to go back to the root, and think about the foundation we need to build for a new paradigm.

What would this look like?

What if the foundation of nursing homes was a focus on LIVING, meaningful living?

What if the foundation of nursing homes included palliative care philosophy? Palliative care is “comprehensive, interdisciplinary care that aims to relieve suffering and improve quality of life for people with advanced illnesses and their families.”

What if the foundation of nursing homes was multi-dimensional well-being, especially emotional well-being?

What if the foundation of nursing homes truly included the voices of people who live in them? At every level.

Think about how nursing homes would look different if these foundational values were their purpose.

Let’s step back.

We might ask ourselves, what is the purpose of a nursing home?

Answers might be: to keep people safe, to treat their medical conditions, to do the things for them that they can no longer do for themselves.

These are not invalid answers. These answers have driven the creation of the system we see. But do they really answer this question of what is the purpose of a nursing home? As we are fixing the system can we envision a new purpose?

Couldn’t the purpose of a nursing home be to create a place where a person can LIVE their life, with the various supports they need to do that?

Couldn’t the purpose of a nursing home be a supportive community that is driven by what people CAN do, and want to do?

Couldn’t the purpose of a nursing home be a comforting place?  

Couldn’t the purpose of a nursing home be to create a place where people can have every opportunity for well-being? Sort of like a one-stop shop for well-being. A well-being festival.

What else could be the purpose of a nursing home?

Okay, you might be saying to yourself, that’s nice, but how do we do these things and care for really sick people? We might start by not first thinking about nursing home residents as sick people, but people, who also have medical needs. They also have other needs. Some of those other needs might even be more important to them. We might also ask ourselves what people really need, even people with medical, physical, or cognitive challenges.

Maybe you are thinking, if we do not elevate the importance of medical needs, how can we trust that they will be met? How will we ensure that people are not neglected?

I am not suggesting that we do not do these things – provide safety and security, medical care, daily support. These things are necessary so that a person can live well. But they are not the driving purpose. And they are not the paradigm under which we make every decision for a person.

We have to think about the purpose of nursing homes, and the paradigm we want to adopt and apply, before we try to fix nursing homes.

Why is it important to think about paradigm before we fix? Here are some examples.

We talk about fixing the reimbursement system. But perhaps we need to first have clarity on what type of care and support the reimbursement system is financing. The reimbursement system would look different depending on the purpose of nursing homes. If nursing homes were driven by the need to ensure multi-dimensional well-being, including emotional well-being, the reimbursement system would look different than a system that seeks to only treat the medical conditions of people. What is the foundational paradigm upon which we create a new reimbursement system?

We talk about fixing the physical structures of nursing homes. Recently, infection control has become an important impetus for us to rethink how the physical environment of traditional nursing homes needs to change. From a medical, infection control perspective, smaller homes and private rooms are better for people living in nursing homes. Yet, there are other things we need to think about. If nursing homes are places where people can experience community, how would nursing homes look to encourage community? Would they be in commercial lots or in neighborhoods? If nursing homes are places where people can find opportunities for meaning, are they physically proximal to possible sources of meaning, whether it be nature, children, animals, the arts? If nursing homes are places where people with dementia can live autonomously, how do we design them so that people with dementia can walk freely within and outside them? What is the paradigm upon which we design nursing homes?

We talk about fixing the regulation system. But one might argue that the regulation system does exactly what is was intended to do. It enforces a system of care that is built on a paradigm of the primacy of medical care. What would a regulation system look like that ensures that people truly have well-being? That their emotional needs drive their daily lives just as much as their daily care needs. That their social needs are at least as important as their medical needs. What is the paradigm that needs to drive a new regulation system?

We talk about the high acuity of nursing home residents with the paradox that the current system does not adequately support them, and that this high level of acuity is also what prevents us from not having a medical model. Yet, we need to consider that these individuals would not necessarily fare worse in a system that puts their overall well-being ahead of just their medical needs, and facilitates for them a good life. They might even do better. What is the paradigm that needs to drive how we support people with multiple, chronic conditions in nursing homes?

How do we move forward to fix nursing homes? It seems that we agree on the problems. I am not sure if we agree about the problematic paradigms that drive nursing homes. Or, the new paradigm that we need to adopt and apply.  I am not sure we have even really allowed ourselves to think deeply about a new paradigm, because we have been thinking so long about how we can’t do it in our current system.

What I am sure about is that it is time to think about the paradigm on which we will create a new system. The current system does not work. Fixing it without fixing the paradigm is not going to work either.

*Although I am mostly referring to “long-stay” nursing home levels of care, there are certainly challenges with “short-stay” or rehab. Also, although I am talking here about nursing homes, other types of care communities need to change too, like senior living.

Resurgence: Interdependence Day 2021

Welcome to my resurgence. A resurgence isan increase or revival after a period of little activity, popularity, or occurrence.” So, a revisionist gerontologist is having a resurgence on interdependence.

 In 2017 my second Being Heard blog was on interdependence. As I am reentering life after the pandemic, and on the heels of July 4th, I thought this a great opportunity to resurge with some thoughts on interdependence.

Happy Interdependence Day 2021! A celebration of our interconnection.

If the pandemic has taught me anything (and it has taught me a lot), it is that we need each other. We are interdependent. How could we have gotten through this without each other?

During COVID, it was interdependence that resulted in many, many health professionals holding the hands of people who were ill and dying without their families and friends present – so that they would not be alone.

It was interdependence that showed up in our bringing food to neighbors who were not able to leave their homes because they were at high risk for COVID.

It was interdependence that drove us to wear masks to protect each other.

Yet, we still cling to this idea that we need to be independent. This thinking contributes to us being disconnected from each other, and we do not see ourselves in each other. We lose our sense of shared humanity.

Has COVID not taught us about shared humanity, that we are interconnected and impact each other?

Maybe it is a good time to talk about interdependence. Maybe COVID has opened some wounds about independence and what it means to be interdependent.

I’m listening. And curious. Where does this overfocus on independence come from?

Our individualistic western society places heavy emphasis on independence in general. We operate under an illusion that everything we do is on our own, with no help from others, thank you very much.  I don’t need nobody! To need others, to need help, is seen as weak. Then you are dependent on others, which is seen as very bad.

Yet. Independence is an illusion.

Yes, I said it. It is an illusion. It is a myth that our culture perpetuates. It lives there with the other mythical illusions, like perfectionism.

I am not truly independent. I am often dependent. These words I write are fueled by years of learning from others, from collaborations. This laptop on which I type – well, it is maintained through virus protection, VPN’s, backups, etc. by my “tech support”  husband. As I walked with my dog this morning, engaged in training to teach him to control his need to say hello to every dog in the neighborhood, it is not I who came up with this training program. It is a fellow volunteer in the dog rescue in which I am involved.  When I have been unwell, I rely on others to help me heal, to support me.

As we get older it seems that a focus on independence becomes even stronger. It seems to carry even more weight in our daily lives and our culture.

This illusion of independence as we grow older is further perpetuated by my beloved field of Gerontology. I love you Gerontology, but we need to take some responsibility for this one.

In the field of aging, “staying independent” is considered an “ideal”. It is woven through programs, research, policy, and practice as a driver of services and even as a desired outcome. It is a driver in that the purpose of X program is to “keep people independent”. As an outcome, X program is successful if X number of people “remain independent”. Underlying the ideas of “aging in place” and “successful aging” is the notion of independence. We send the message to older people all the time that to be independent is the best they can be and something to strive for (as if it is something that is entirely under our control).

Understandably, Gerontology likely focused on independence as a major goal because it wanted to dispel the idea that older people are dependent – defined as sick, frail, not contributing to society. But perhaps this current focus on independence is an overcorrection that we need to revisit.

What does it really mean to be independent anyway?

It is actually unclear. Although it is variably defined, it generally is thought to be a person who lives in his/her own home, with little or no formal support. In some cases it might simply be a person who does not need assisted living or a nursing home. In nursing homes and assisted living, we might use that term to describe someone who needs little or no support in a particular daily activity, like dressing, So, according to this definition of independence, a person living in a nursing home who volunteers to read to children, but needs help dressing, is not “independent”. A person living with dementia who relies on a transportation service to get to her church, but cannot drive on her own, might not be considered “independent”.

The underlying message is that to be “independent”, requiring less or no support from others, is good.

We need to consider not putting independence on a pedestal. Why?

First, why should independence be the primary goal of aging/living? What about well-being? Happiness? Joy? Meaning??!!!

Second, when we perpetuate the idea of independence as the ideal, it contributes to othering. “Those people” are not independent – they are DE-pendent. They clearly did something wrong! I don’t want to be like those people. Relatedly, this allows for people to feel as if not meeting the false ideal of independence means they are failing. They are failing at aging or life. (Not true.)

Third, if we feel social pressure that we have to be independent, that this is the measure of our success, we might not seek out supports that could facilitate us reaching these other goals, like well-being, joy, and meaning. We might feel shame in asking for help. We might deny that we need help. By not getting support, we might actually contribute to our own disabilities. We might disable ourselves, rather than enable ourselves.

How do we move from independence to interdependence?

Perhaps we need to unpack some things.

First, we might unpack what independence means for us, so that we can determine what elements of independence need to be better understood. Maybe there are elements of how we define independence that we need to uphold.

One example is privacy. If to be independent means to have privacy, people have a right to privacy, regardless of what supports they might need. We need to value privacy.

If to be independent means to exercise one’s autonomy, including not having people make decisions for you, we need to learn how to better navigate autonomy, and how to be with people in partnership that supports what is important to them as well as health, safety, etc. (More on this in an upcoming blog!)

We might also unpack what it means to be dependent. There are such negative connotations with being dependent on others or other things, especially as we get older. What are our fears related to dependency? I have heard people say that they don’t want to lose themselves. That they don’t want to lose control over their own lives. How can we see each other, not for what we need or don’t need, but for who we are as human beings? How can we ensure people have control? How can we help each other see that dependence is not just loss – it is also gain? Through dependence on another person or another thing, we might gain the ability to do something, even if if looks different than it did before. That’s perseverance.

Of course, we need to unpack interdependence. What does it look like? How do we practice it?

Interdependence has been broadly defined as being based on “the premise that in reality human relationships are based on mutual dependence, exchange, and partnership.” This is a beautiful idea, but maybe not super clear or simple to practice. Perhaps we need to define interdependence more clearly. For me, to better understand interdependence it is helpful to consider what interdependence is and what it is not. Let’s start with what it is not, from my perspective.

What Interdependence Is Not

Interdependence does not mean that you entirely give up what you want because you need something from another person. A central component of interdependence has to be knowing what is important to each of us, sharing this with others, and collaborating so that this is honored to the best degree possible.

Interdependence does not mean being purely dependent on another. We are mutually dependent. The nature of that balance changes, as it does throughout life. The nature of interdependence is such that our needs and wants are known and honored. Being purely dependent on another would mean that our own desires are not considered. This would not be interdependent.

Interdependence does not mean that we give up independence. To be independent means that we have needs and wants. Our human rights are upheld in interdependence, which includes rights to privacy, self-direction, well-being, meaning, joy…..

Interdependence also does not mean that we continually deny others the opportunity to help us. Interdependence is not independence with just more letters in the word. Interdependence means considering that being there for each other and supporting each other is a gift to each other, for both those who give and receive.

Interdependence is not always “balanced”. There are times when we need more than others. There might even be times when what we can give someone else is very little, and what a person can get from another feels small.

Interdependence does not mean we support each other in the most perfect way with no compromise in how we support each other. It isn’t perfect. 

Interdependence is not just about doing things for each other. It is being there for each other.

So, what is interdependence? What might some “key ingredients” to interdependence be?

What Interdependence Is

A key part of interdependence is autonomy. For all parties involved. That might seem counterintuitive to a person who sees interdependence as losing autonomy, but autonomy is central to interdependence because we all have needs and wants. One person might have a need for support and the other person might want or need to offer that support. We need to be willing to share with each other and listen to each other. That means that we have to know each other and trust each other.

Which brings me to another key part of interdependence – trust.

When we are dependent on each other, when we seek support from others, and give support, we have to have trust in each other. This looks like:

  • I trust that you will share with me what you need, and what is important to you.
  • I ask that you will trust me to let you know what I can and cannot do. How I can support you and how I cannot support you.
  • I trust that you will honor my perspective, and you trust that I will honor yours.

Perhaps other key parts of interdependence, which we need to devote more attention to, are humility, openness, and adaptation. Giving or receiving help to each other is never perfect. We don’t always exactly get the type of help we want or need, and we don’t always give it in the most perfect way. So, perhaps we also have to approach interdependence with a sense of kindness and empathy for each other. Just like we need each other, we are also doing the best we can, and we try to do better.

Living in the spirit of interdependence might change the nature of our conversations as we grow older or grow with dementia. Maybe we can find other ways to approach difficult conversations about supports a person might need, that are less driven by the need to “manage” people, and more driven by mutual needs and perspective-sharing.

With all this said we still struggle with how to practice interdependence in reality, how to truly support each other as we change and grow throughout life. There are realities that a person with dementia might have difficulty making decisions and might be dependent on another person helping them make decisions, or making decisions on their behalf. In these spaces, how do we continue to be interdependent when the balance shifts so that we are taking more of a role in supporting a person? How do we practice interdependence when a person’s choices are compromising their health or safety? How does interdependence look when a person needs a high level of care and the person providing support feels that they are no longer receiving anything from that person?

It is in these gray areas that we need to consider how to live interdependently.

Interdependence is not all rainbows and butterflies. In many ways, it requires us to be acknowledge our universal human vulnerabilities, that we are all imperfect, that we all get sick, and that we all will die. Definitely not rainbows and butterflies.

There is value in this acceptance of vulnerability. We recognize that it not just other people who get sick, who get dementia, who need support, but it is I.

We need to be open to the possibility that we might need help or support. That we might have dementia or illness. That accepting support from someone might enable us to do the things we want to do and live the life we want. It helps us to think about difficult questions like how do I move to a place of acceptance in which I might consider that a walker can help me to continue to do the things I might like to do, like going to a concert?

Although independence might be held up as an ideal or goal by many, we need to consider that it might actually be unrealistic, unproductive, or even detrimental to our well-being. To not accept support, in name of being independent, could have negative consequences, like keeping me from living the way I want. Fierce independence can even be disabling. Interdependence, including support from others or adaptive devices, can be enabling.

Perhaps independence is held up as an ideal because we don’t have a better ideal for which people can strive as they get older. Like a meaningful life. Perhaps interdependence is not seriously considered because we feel there are few opportunities for us to practice reciprocity as we grow older. Perhaps we feel that no one wants to take what we have to give. Perhaps a new paradigm of growing older could include interdependence as an ideal. And if practicing interdependence might help us achieve a meaningful life, would we more likely accept it?

Paradoxes of Aging

Ageism is a constant undercurrent in our society. Ageism is essentially defining a person, and making assumptions about them, entirely based on their age.

Yet, we cannot deny age. It is a part of a person. Age, which might simply be seen as the passage of time, does make a difference to a person. One might even say that it significantly impacts a person.

Hence, a paradox!

2_3There are many paradoxes in aging.

The Covid-19 experience brings to the surface not just ageism, but these paradoxes about aging. It uncovers many of our tensions in how we see and think about older people. As they are exposed, it seems like a good time to pay attention to them. These paradoxes help us think about the paradigm of aging we want to promote, which is the antidote to ageism.

One of these tensions is in the idea of chronological age.

Chronological age, in itself, has limited meaning. It says that a person has lived a particular number of years. It does not define a person, and it certainly does not explain who an individual is.

On the other hand, chronological age does say something. It says that a person has lived X number of years. It says a person has life experience.

If you think of the meaning of chronological age throughout the life span, this holds true for any age. A teenager has lived a particular number of years. It does not define them. But it is an important part of who they are.

There is something particularly special about living for a long time. In fact, there is a lot of data that suggests that as a person ages (grows), they gain all sorts of things that are associated with lifelong growth. For example, the possibility of wisdom.

There is evidence that a person’s emotional well-being might improve with the passage of years. That through living, a person develops adaptive strategies and tools, develops meaningful relationships, does better at emotional regulation, etc.

Aging means something. The experience of growing older means something.

So, the first paradox is:

We cannot define an individual entirely based on his or her chronological age. We do not want to make assumptions about a person based on their age.

And….

Age is a part of who a person is. Chronological age means something.

i-am-461820_1920The Covid-19 experience has also caused us to consider older people as a group. And there is a tension here.

Are older people, as a group or stage of life, unique in some way? In other words, should/might people have their own ‘hood as they acquire life experience through years? As in elderhood? Older adulthood?

If this stage or group is special, do we need to have a level of reverence for individuals who belong to this group?

A clear downside of this is seeing a group of people as all the same, or making universal assumptions about individuals in a group because of their belonging to this group.

Another downside could be othering – thinking that older people are “them”. We would need to recognize that people in elderhood are “us”. Maybe just not yet.

Yet, there is potential to see older adulthood as important in our society. Something to be celebrated, just like we celebrate other life milestones such as adolescence.

Sometimes I hear suggestions that we should not associate older adulthood with being something unique at all. Some people do not want to consider themselves as being in older adulthood or elderhood. It is understandable, for many reasons. And, it worries me a little.

Are we saying that we should see older people as people at midlife who have just lived longer? Eternal midlifers? If older adulthood was not a thing, you could just stay in adulthood. But then there might be no reverence for growing older, because it would not be considered a special ‘hood.

What does it mean to think of older people as a group? As a status?

I think this tension in seeing older people as a group that is separate/not separate particularly arose when initial guidance on the virus was directed towards people 65+. There were concerns about this resulting in negative perceptions/treatment of older people as a group (because it had less focus on the individuals within this group). There were valid concerns about ageism and paternalism. While there was unfortunately talk of essentially “sacrificing” older people to the virus, I also heard a genuine concern for older members of our communities

When people were initially thinking this virus primarily affected older people, I heard younger people say things like, “I am doing my part so my mom/dad/grandparent is safe”. I heard stories of family members going out to the grocery store for all older members of their families, concerned that they should not be exposed.

There is something beautiful in this. Caring across generations. A reverence for elders.

The second paradox is:

People in older adulthood/elderhood should not necessarily be treated differently as a group – we cannot make blanket assumptions about them as a group, or treat them unilaterally because of their belonging to this status. Each person within this group is unique, and maybe we shouldn’t even see them as a group.

And…

People who have achieved older adulthood/elderhood have achieved a special status that deserves reverence – they might be seen as belonging to, and having value as a group in our society. So, we might treat them differently?

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A third tension that is being brought to the surface is our intense discomfort with vulnerability.

Yup.

It might be useful to consider what is meant by vulnerability in gerontology. There is a “lack of consensus” in how vulnerability is defined but, in the context in which we are hearing it, it broadly means an increased risk for negative consequences.

So, it is not incorrect to say that there is vulnerability in growing older, based on this definition. It would be incorrect to say that every person has the same level of vulnerability. For example, in a two-week snapshot, 79% of deaths from Covid-19 were people 65+. By this definition, older people might be considered vulnerable. Yet, not all individuals 65+ are at higher risk, especially when compared to individuals of any age with serious health conditions. I do understand, from a public health perspective, why the guidance was given to particularly “protect” “vulnerable” people age 65+. I also understand the concern about public health decisions based entirely on age. This is an important conversation. And it made me curious about how we feel about vulnerability.

Growing older does not equal vulnerable or frail. Each person is unique. Every person has their own health “profile” and many older people are what we would consider physically healthy.

And, with aging comes increased risks for physical and cognitive challenges – vulnerabilities. There are people who are older who are ill. People who have various types of disabilities. This varies with many individual factors.

I get concerned when we try too hard to entirely separate physical or cognitive challenges from growing older. When we attempt to minimize the possibility of vulnerability, and even portray it as something “bad”, we risk portraying these individuals as “bad” – as not aging well like the rest of us! We might then send the message that there is really only one way in which we need to see older people, and that way is as healthy, vital people.

By portraying vulnerability as “bad aging”, we also make the possibility of illness and disability scarier.

We seem so uncomfortable with the idea that vulnerability is also a part of the experience of growing older that we sometimes go to the other extreme of overemphasizing vitality.

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Why are these mutually exclusive? A person can both be ill and vital. A person can have dementia and be active. A person can be medically vulnerable, perhaps needing more of the support of others, AND be able/willing to give as well as receive. These are false categories.

I think if we dig underneath, and get to the root, we will see that we are just intensely uncomfortable with the idea of vulnerability.

We have been upset at being considered “vulnerable” when we are lumped into the 65+ guidance with Covid-19, regardless of our health status.

Now, I am not saying that it is not justified to be upset. There is a lot of putting people in boxes going on here.

But, WHY are we so upset about being considered vulnerable? Is that so wrong to be a person that is vulnerable?

Is it the label? What about the people who would be considered “vulnerable” – people with multiple health conditions, people living in nursing homes, etc.? If we are feeling uncomfortable about being called vulnerable, imagine how those might feel who are labeled “vulnerable”. I am sure it does not feel good.

I don’t know that the answer is to deny vulnerability. It might be to accept it. Not as a function of growing older, but as a part of the overall human experience.

So, the third paradox is:

We cannot equate aging with vulnerability – each person experiences health differently.

And…

Vulnerability is a part of life, and with age comes an increased risk for negative health experiences and outcomes, at least in some aspects of health.

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And then, I wonder.

I don’t think that our conversation about the experience of growing older should primarily be about what it isn’t, because that then leads us to define what growing older is. I don’t think we can define that for anybody. I worry that by focusing our conversations on what is not common or “normal” for most older people, we are still limiting what we think an older person “should be”. An older person can be ill, can be well, can have dementia, cannot have dementia, and yet this is not the essence of what growing older is.

I believe we need to promote a multi-dimensional view of the experience of growing older, which at its core means that each one of us is an individual, that as we go through life we grow, and this experience of growing older is never one thing, lest of which is age.

What all of these paradoxes point to is the truth- that each person is a unique individual throughout life, so this does not change with age. Perhaps we need to consider deeply what it does mean to grow older. Perhaps we can develop a comfort level that growing older is a part of life, perhaps a very special part of life, and maybe even something that we should honor. We might honor it not because a person is healthy or not healthy or wise or not wise but simply because it is this experience of the passage of time that is special and might result in us growing.

What would it look like to see a person as a multi-dimensional individual, and age is a part of this?

Can we reconcile the paradox that each individual is unique, at every age, and more than their age, and also honor that there is something special about the experience of growing older?

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Covid & Culture Change

We are hearing beautiful, tragic, heartfelt, desperate stories from people working in nursing homes. People who are stepping up in ways that we cannot imagine. I know these people. They are giving everything they have.

The people working in nursing homes do not need blame right now.

They do need supplies, encouragement, and love.

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AND, nursing homes need to change.

They need to change from institutions to communities. They need to not be seen as “warehouses of the old”, but places where people get the support they need to live their lives well. Places where people who work there are supported and respected.

The Covid-19 crisis uncovers problems that have been there – ageism, staffing shortages, under-staffing, turnover, broken systems that do not serve the people using them, and overall feelings of lack of support, whether it be from within organizations or outside them – reimbursement systems, survey processes, and the healthcare system-at-large.

There are many nursing homes who struggle every day to just get through the day.

I think most people would agree that there needs to be another way.

There has been much debate over the years about how to do this. Culture change is the way to do this.

Culture change is the term given for the deep transformation of care communities from institutional, medically-driven cultures to ones that are person-centered. The Covid-19 virus offers an opportunity to think about where culture change will go from here.

This crisis points to the value of, and need for, culture change, and what we learn from this crisis can further help us transform care communities into better places to live and work. This crisis can present us with an opportunity to promote continued change. To maybe even build something new.

So, what CAN we learn from this crisis that will help us to keep culture change alive? Can we use these experiences to grow the culture change movement?

In fact, many people have been practicing person-centeredness throughout this crisis. When guidance came to care communities to restrict visitors, group activities, and communal dining, what happened? There was an unbelievable response to find creative and alternative ways to connect with people living in nursing homes, and to remind them that they were seen. There was widespread, and almost instantaneous recognition, that people living in care communities were already at risk for social disconnection, and that this pandemic dangerously heightened this risk. I was so touched by the many people who wanted to be a light for people living in care communities.

Throughout this crisis, care communities have been living person-centered values. We can do this. We can change the culture of long-term care.

Karen Stobbe, Chief Purpose Officer of In the Moment, recently said to me, “I think we are learning that we can do change. I looked over at my passenger seat today, at the hand sanitizer, the mask, and it hit me how much we all have had to make changes. We CAN do change. Nursing homes and assisted living communities can change. They have during this crisis. They have adapted. They had to. They even had to do this in situations where there are limited or no resources. Maybe we can use this experience to see that change is possible, and we have what we need to make other changes. Maybe if leaders look to the future, knowing that they have to make changes, because it benefits everyone, and they know they CAN do it, this will help them. Their teams have been doing it throughout this crisis.”

Yes!! We CAN change. Here are some areas where we might gather lessons from this crisis as fuel for change.

I will try to connect some of the lessons we are already learning with foundational principles of culture change, developed by the Pioneer Network.

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Each person can and does make a difference.

One of the principles of culture change is a fundamental recognition that all human beings deserve choice, dignity, respect, and meaning. This is for both people living and working in care communities.

Culture change reminds us that the people who care for individuals living in care communities are THE cornerstone of that care. So, there must be enough people to care for those living in care communities. They must be respected. They must be paid sufficiently. They must be given the tools they need to do their jobs well. These are individuals who show up every day to do important work and we need to treat them this way.

I have an optimistic view that this crisis is helping to elevate the extreme importance of people working in healthcare and long-term care. Healthcare and long-term care heroes are inspiring people all over the world, and perhaps this inspiration will lead to people wanting to join these fields. How can we tap into this inspiration to recruit people to work in care communities, and to keep the amazing people we already have?

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Community is the antidote to institutionalization.

Perhaps one of the greatest lessons we are learning from this pandemic is our need for social connection and community. Perhaps we can ask ourselves, what does it mean to build real community in care communities?

Communities are foundational to authentic living. And, communities are created through authentic living and relationships, when we come together in real ways to support each other as humans. Like we are doing now. So, we are learning more about what it means to be communities and not institutions. How has this pandemic shown us how we have community in care communities? What are we learning about where community is lacking and how we can make it stronger?

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Caring for the spirit is as equally important as caring for the body.

Despite the medical emphasis that is needed to address COVD-19, we are also caring for the spirit in care communities. We are living the deep knowledge that a person’s emotional and spiritual needs are just as, if not more important, than physical needs. What can we learn from this crisis about how we can better balance these needs?4_2Promote the growth and development of all.

As we continue to seek ways to create community and connections with people living in care communities, we might also consider how these individuals can be active participants in giving back to the community. All people have a need for purpose, for reciprocation, and I imagine people living in nursing homes will welcome the opportunity to help us heal, reconnect, and recover.

These are just some of the areas that need to be examined and where we need to keep doing better. And I believe we can.11Yes, there are many challenges. These challenges have been there. The same challenges might keep us from changing. Not enough money. Not enough time. But care communities are exhibiting their ability to make the best of what they have, to dig deep. We can use this energy to transform. Perhaps this will create awareness of the need for better financial support for long-term care communities and those who work closest to the people who live in them.

It is important that we do not lose this momentum, and place too much emphasis on the need for money to move us forward. Care communities have been transforming their culture for many years now, and have demonstrated their ability to change, so change is possible despite an influx of money. Additional financial support, especially to pay direct care team members increased wages, would certainly help. But change is not entirely dependent on this. After all, it is still possible for a home that has a lot of money to be very institutional. And giving more money to an institution might just grow the institution, unless there is desire and commitment to change. So, it is bigger than dollars.

Maybe this crisis will help us think creatively about how we ensure that a person-centered culture is the norm, and that it is the driver of operations, not a sidebar.

Can we use this crisis as an opportunity to look deeply within ourselves and see what we have done well, and where we can do better, for both the people who live and work in our communities?

I do see opportunity in all of this. The missed opportunity would be to move forward without envisioning something different.

I think we have to recognize a few truths at the same time.12Nursing homes need support, not blame.

The people who work in nursing homes are a part of a system that is not working for them.

The relatively small number of nursing homes who are really “poor performing” do not represent all nursing homes. And, they need support too.

All nursing homes need to change, or continue changing, from institutions to communities.

There is a relatively small number of nursing homes who have been on the journey of deeply transforming their culture. These homes serve an important role as we move forward.

  1. They demonstrate it is possible.
  2. They can serve as mentors and leaders to others.
  3. As they continue on their journeys of change, they can share these journeys, so that we can all develop comfort and acceptance that change is ongoing and never perfect.

There is also an opportunity to widen our lens from a primary focus on culture change in nursing homes. Culture change needs to happen across the entire system of supports and services for people who are growing older, growing with dementia, and those who support them – this includes all of senior living and home-and community-based services. Another lesson of this crisis is that which we already know – the system is fragmented and silo-ed, and we are better together.

I believe in the people in nursing homes and I believe that nursing homes themselves, as systems, have to change. Nursing homes are not adequate for what we need. They do not allow for everything that they could be, for both people who live and work in them.

I believe in nursing homes and the people who work in them. I know that they have what they need to transform culture. They are showing us this right now.

So, let’s do this – let’s change from institutions to communities, to places that live out person-centered values at every level. This is all possible. We know now that anything is possible.

People are living in nursing homes are working so hard. We owe it to them to create something better. Let’s build something new together. Culture change can help show us the way.15_1

 

 

I Have No Words, And I Also Do

I have to admit. This Revisionary Gerontologist hasn’t had the words to talk about this pandemic and this crisis. To be honest, it has almost felt wrong to share my meager reflections when people are dying and in pain.

Yes. And. I was finding that the lack of words was becoming agitation. In my experience, behind agitation are feelings. Usually, these are feelings that need to be expressed in some way.

I don’t know about you, but I feel many things right now, because I see so many people suffering in so many different ways. And it is very close to home. I see how this pandemic is especially impacting older people in our communities, at every level. I see how nursing homes and other care communities are struggling, with limited or no resources. Yet, the people working in care communities show up every day. And they keep caring for our neighbors, our parents, our siblings, our friends.

“These are my people!” I want to shout.

“They need help!” I want to scream.

How do we help them? I say to myself.

I hope we care about them? I whisper in especially low moments.

I might not have adequate words for what is happening right now. I know they will come eventually. But I do have feelings about it. Maybe you do too.

I say these things from the comforts of my home, where I quarantine with my husband.

So, I have guilt.

Guilt about all these amazing people out there caring for people living in care communities. I used to be one of them, and I am not now. I have guilt that I have not been able to make things better for them, after all these years of trying to change the culture of long-term care and how we see and support those who live and work in this culture.

So, I feel helplessness. What can I do? Is there anything to do? Who do I call? What would help?

I feel anger.  It is not placed at anyone in particular. Just anger. Because nursing homes and care communities are a part of our community. They are not separate from us. They are us. We need to care about them. We need to care about what happens in them. We need to hear their voices. Is a lack of attention to care communities in this pandemic the ultimate display of our pervasive ageism?

So, then, there is sadness. Sadness for the pain in care communities, for both people who live and work there. Sadness for the families of people living in care communities.

And it is more than care communities, of course. The families caring for individuals who are living with dementia in their own homes. People living with dementia, who might not have access to the details of what is happening, but feel the anxiety and sadness around them. I feel guilt, helplessness, anger, and sadness here too.

I feel this and I also feel….

Love, gratitude, and awe. For the incredible work people are doing, in care communities, in hospitals, and in our own worlds and lives.

And I feel hope. I really do. I am hopeful that we will continue to think about, and be curious about, what is happening. These experiences present new reasons to explore our feelings about vulnerability and aging, and to ask ourselves how we balance the care of the body with the care of the spirit. I am hopeful that we will take these opportunities to explore the connections between our paradigm of aging (which we need to change), and how this has manifested into the systems and supports we have. To give words to this. Maybe even a revolution.

There is hope in how we might take actions, now and moving forward.

Now, we might share ideas on how to support our communities, which include care communities. Maybe we can find out what care communities need and how we can help get it to them. Maybe we can call our elected leaders and our government agencies, and ask them to make sure they are supporting care communities, both those who live and work in them. We can demand that care communities receive the support they need. That they matter.

It is also okay to sit with our feelings, to take care of ourselves, and to heal. It is okay to be rather than do. We need to rest for what is ahead.

There is hope in how we move forward. These experiences are providing us with precious opportunities to consider how we will build generationally-inclusive communities, how we will address pervasive social disconnection, how we will transform care communities into better places to live and work, how we will actively include the voices of elders, and how we will change the paradigm of growing older and growing with dementia. This is the work we have ahead of us. Let’s do what we need to get ready.

More about all of this soon.

Prisons?

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“This place is like a prison.”

This is a comment I have heard several times from people living in long-term care communities (both nursing homes and assisted living communities). Perhaps one might be tempted to dismiss this comment as trivial or expected. “Well, of course Mrs. Wilson does not like it in the nursing home. Who wants to live in a nursing home?” Or, “Dad is just angry that we put him in assisted living”.

But I think this comment deserves examination. One, because we need to consider how close long-term care communities might be to prisons. And two, because examining this comment might provide insight into how we have to change.

First, we need to acknowledge that many long-term care communities are indeed operated as institutions. This is except the relatively few that have deeply transformed their culture from an institutional culture to a person-centered one. We are all struggling with unlearning this deeply ingrained institutional culture.

Then, we need to be honest with ourselves about the various examples that underscore the possibility that long-term care communities are indeed still very much like prisons. Here are six examples of how care communities and prisons have similar qualities.

Note: These are real quotes from real discussions I have had with real people living in long-term care communities, or who have family members living in long-term care communities.

“I am a POTW- ‘Prisoner of this Ward’. I can’t even go outside my room without them sending me back.”

#1. People cannot come and go as they please.

Yeah, but…..(this is the voice of how we have justified this)

We cannot just let frail, ill people, especially people with dementia, roam around. It is not safe.

Or…..(this is the voice of how we might think differently)

It is also not necessarily safe to keep people from coming and going. Rather than putting our energy into keeping people from leaving, we can put it into finding ways to create communities where people want to grow and live. And ways in which they can live as they please.

“No, [I don’t have choice about waking up]. But that is not important to me. It is not important because I have the chance to be sleeping all day. I need to be more active anyway. It is like prison.”

#2. There is a strict daily routine, and everyone follows it. It is created by the people who run the place.

Yeah, but…..

We cannot have people doing what they want when they want to do it. Besides, people in nursing homes like routine. We need to create this structure for them. They like it! Do you see them lining up for meals?

Or…..

People in nursing homes go along with these routines because they become conditioned. Which is exactly the point of strict routines. People lining up for their meals only tells us that we have done a really good job of creating a culture in which people think they have to line up for meals. Perhaps we can consider what it looks like to create a natural flow of daily life, and how this might differ for each person.

“It sucks! Just like jail. Not a person anymore. Offered coffee, I don’t drink coffee. Want to have whatever I want, a cocktail! Want to enjoy myself, even if I’m diabetic, eat what I want sometimes.”

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#3. People cannot eat what they want when they want it. In many cases, meals are served at a specific time and there are limited choices as to what is available. Also, a person is restricted from eating what she or he wants because of “special diets”, like someone who has diabetes or hypertension.

Yeah, but……

We cannot let people with serious medical conditions just eat what they want. Their conditions will become unmanageable. They will get very sick. They might die.

Or…..

In the “real world” people make bad dietary decisions every moment. I know I do. Food is important, and so is how we eat. Sometimes I like to eat by myself. Sometimes I like to eat with friends. Maybe we can better understand what it is important to people in terms of food and eating. Maybe we can work with people to come up with strategies of moderation. Maybe we honor that they might not want to make healthy choices.

“In prison they do life for murder and they get one hour outside. Our [residents] here – they do not even get to go out in the garden.”

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#4. People have limited access to outdoor space, and when they do, it is typically on the schedule of the people monitoring them.

Yeah, but……

We cannot let people outside without supervision. They might fall! Or, they might climb the fence.

Or…..

Regarding the risk of falling outside, um, do people not fall inside as well? And about the fence climbing – I have heard this response many, many times. I am not saying it never happens, but my guess is that it is not a frequent occurrence. Also, if a 97-year old person successfully climbs your fence, we need to re-evaluate their fitness level. Well done, athletic fence climber!

There are endless benefits to being outside, to having access to nature and fresh air. Perhaps we can put our energies into creating outside spaces that people can use, or ways that people CAN go outside. 

“The big difference for me…..having experienced almost six years in a nursing home is that the person gets lost.  There is absolutely no conception that this is a mother, this is a person that worked, this is a person who contributed to her society, she is just a number, whatever.  She is dementia, she’s this, she’s that.  You limit your personhood.”

#5. People lose their rights.

Prisoners do not have full constitutional rights. However, they are protected from inhumane treatment and cruel and unusual punishment.

In long-term care communities, people living there might relinquish rights every day. They might lose their rights to privacy, autonomy…. One might argue that they are subjected to inhumane treatment.

Yeah, but…..

The people living in nursing homes are not able to make decisions on their own. We know what is best for them. Their families know what is best for them.

Or….

According to federal law, people living in nursing homes have the same rights as any American citizen. Perhaps we can think of people living in nursing homes as fellow citizens. We might even call them that. Would that help? Citizen assessment rather than resident assessment? Citizen’s council rather than resident’s council?

“They have had problems with the nurses interfacing with the inmates…there is concern about them getting to know us personally.  Why not have a short conversation about how your day is going, what do you need? What can I do for you?”

#6. People who work there are primarily concerned with safety and security.

Yeah, but….

The most important thing is to keep the people living there safe. That is what the government pays us to do and tells us to do. That is what families want. That is what society wants.

Or….. 

People who work in long-term care communities are not wanting to act like correctional officers. I don’t think nurse aides become nurse aides because they really, really like keeping people safe. Let’s focus our energy on enabling people who work in long-term care to be primarily concerned with supporting people to live well.

For Your Feedback(10)

So, you might ask, what is the crime committed by people living in long term care communities? Being old? Being sick? Having dementia?

Am I being overly dramatic? I don’t think so. We need to ask ourselves, do we want to run prisons? Or…. do we want to run communities where people live and thrive?

I think we want the second.

Yeah, but….

Wait, please don’t go to regulation, time, and money. Those are all real. But what can YOU do?

How can we move from “can’t” to “how”?

Writing this post made my stomach hurt. Because I know many beautiful people working in nursing homes who do many beautiful things. Perhaps they feel they are in prisons too.

Yet, these quotes are real. I hear and see that people living in care communities feel like they are living in prisons, physically, but also psychologically.

Perhaps some will read this and think, “Wow, these must be awful places where people said these things.” Or, “That is sad that other places feel like prisons, but not my nursing home or assisted living community.”

For Your Feedback(11)

So, I just ask you to take a deep breath, look around, and listen. Even if you don’t hear people using the words “prison”, “jail”, or “inmate”, how do people feel free or not free? Do these parallels of prison and nursing home life apply? Why?

Maybe think about the ways in which we inadvertently, and sometimes with good intention, create a prison culture instead of a thriving community. We can start there.

This is for all of us. Whether you work in long-term care, have a family member living in long-term care, or might someday live in long-term care.

For Your Feedback(12)

Here are some questions we can all consider.

What language are we using or hearing to describe living in a nursing home or assisted living? Institution, facility, unit, ward?

How might we be encouraging the idea that “putting” a person in a nursing home or assisted living community will result in that person “having to” do things that we want them to do, or not doing things we don’t want them to do? In other words, mom is making some decisions at home that we do not agree with, but when she moves into this assisted living she will be better “managed”. We will create a care plan FOR her, and she will need to follow it.

How might we be setting expectations that a person “needs” to give up their rights or autonomy when they live in a care community? How might we be perpetuating the idea that this is just the way it is in nursing homes or assisted living? How might we be sending the message that people who live in care communities will need to go along with the routines of a nursing home or assisted living?

How do we inadvertently create correctional officers out of professional care partners? What messages do we send to them about how they need to keep their “charges” in line, under control, on a schedule?

How do we have conversations with the people living in care communities about how they might feel imprisoned? Even in thriving, person-centered care communities, the people who live there might be struggling with adapting to living there, and feelings of loss and dependence.

And here is the big question. What does it look like to build a thriving community? For real. How do we create real communities, where people can live their lives with meaning, purpose, identity, connection, autonomy, security, joy (thank you again, Eden Alternative for holding up these domains of well-being)?

In the modified words of Pioneer Network,

“Community is the antidote to institutionalization.”

Community is the antidote to prison.

 

Entrepreneurial Gerontology

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

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

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

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

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

Enter entrepreneurial gerontology.

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

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

Entrepreneurial Gerontology is a Thing—and We Need It

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

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

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

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

Gerontology Is Rooted in Innovative Potential

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

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

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

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

Entrepreneurial Gerontology Is Already Happening

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

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

Entrepreneurial Gerontology Is a Way of Thinking Differently

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

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

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

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

We Can All Be a Part of Promoting Entrepreneurial Gerontology

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

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

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

 

Do People with Dementia Really “Live in the Past”?

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

Wow, this question led me down a rabbit hole.

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

Hmm, that is so meta.

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

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

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

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

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

So, let’s jump in, shall we?

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

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

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

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

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

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

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

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

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

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

Let’s keep tumbling down this rabbit hole.

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

All of us can identify with this.

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

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

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

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

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

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

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

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

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

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

We are picking up speed down this windy rabbit hole.

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

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

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

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

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

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

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

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

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

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But why does this matter?

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

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

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

Why is this important?

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

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

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

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

“‘Who are you?’ said the Caterpillar.

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

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

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

‘I don’t see,’ said the Caterpillar.

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

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

‘Not a bit,’ said the Caterpillar.

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

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

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

-Alice in Wonderland, Lewis Carroll, p. 59

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Fundamental Attribution Error (It’s Us)

We so underestimate people living with dementia.

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

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

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

An example of fundamental attribution error would be:

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

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

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

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

Maybe it is us.

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

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

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

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

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