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.

Welcome to my resurgence. A resurgence is “an 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 4^th, 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?