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!

There 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.

The 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?

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.

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.

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?

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.

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.

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?

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?

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?Promote 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.Yes, 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.Nursing 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.

 

 

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.