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.

Blue the Butterfly

Many of you know that Blue the Elder Dog died last September. He was the most special dog.

I believe that Blue returns to me, periodically and intentionally, in the form of a Monarch Butterfly.

It’s okay. Take pause. I will explain.

The first time was shortly after Blue died, maybe the next day. I was sitting outside in our screened porch area. I was numb and processing what had just happened. A Monarch Butterfly flitted around the outside of the screen, sort of frantically trying to get inside with me. Then he rested on a bush. I watched him.

I thought to myself that I had never seen that butterfly here before. The thought of Blue crossed my mind but I shook it away. It felt like him. But how could Blue be a butterfly? Silly!butterfly-3662094_1920The second time was several weeks later. I was on a run. My running path goes past this house that has a German Shepherd in its backyard. The fence follows the path, so as I run along it, the German Shepherd likes to run with me. Actually, he races back and forth along the edges of the fence and barks and growls at me in a threatening way. Every time. This makes me a bit nervous.

My heart rate rose as I ran past.

And then, the Monarch Butterfly (Blue) came out of nowhere and started circling me. He flew around me for several seconds until I felt myself calm. And then he flew away. Blue was always very protective of me, all 20 pounds of him. He was my running buddy for 12 years. On our runs, there was no dog, child, runner, or moving object that would escape his notice, and be acknowledged with an adorable fierce warning bark.

As I was walking back home after my run, I passed a grassy area where we used to walk with Blue frequently. And there he was. The Monarch Butterfly ran through the field, frolicking up and down. And I had to stop and watch him. He was pure bliss.monarch-699556_1920There have been countless examples of Blue the Butterfly, moments in which I’ve been thinking about Blue, or talking about Blue, or just needed Blue, and the Monarch Butterfly has visited.

It is understandable that one might think this coincidental. But I don’t believe it is.

The most recent experience just happened about ten minutes ago. This is what made me realize I had to share this today.

I was walking to a coffee shop, where I often work to escape the distractions of my home office. As I am walking along a very busy street, cars honking, my brain travels to the upcoming Memorial Day weekend. I am excited for it. I am thinking how nice it would be if we were close to a beach, just for a day trip. Oh, I remember that beach we went to last year, on Labor Day weekend – it wasn’t too far away.

We went to that beach the day after Blue died, to escape our sadness. It didn’t work. That was Labor Day weekend. I think of him and am overcome with his loss.

I marvel at how grief appears, willfully and randomly. I indulge myself in a brief fantasy in which a stranger pulls up beside me in a car and hands me a puppy Australian Shepherd, begging me to take it home. What choice would I have?

And then, it happens.

A Monarch Butterfly (Blue) flies in front of me, weaving back and forth before me as I walk along. He dives into my face, and then pulls back, running away happily. It is the first one I have seen this year. I gasp out loud. (Okay, I might have said an expletive out loud.)

I am shocked into attention. I see that it is the most perfect Spring day.butterfly-680348_1280I write this knowing that some of you will think I’m a weirdo. That is okay. Of course I am! I am not afraid of being weird.

You might also wonder what this has to do with being a Revisionary Gerontologist. I don’t have a straight answer, but I just know it does.

Maybe it’s because this has to do with living and dying.

Maybe it’s because this is about grief and loss and all the things we don’t want to talk about.

Maybe because this is about paying attention.

One of the many things that Blue taught me, and continues to teach me, is about paying attention. Paying attention to what’s around us. Stopping and paying attention to what’s inside of us. Stopping and paying attention to those around us, what they’re trying to tell us, with or without words.

It is a reminder to me to pay attention to the miracles around me. They are around us all the time and we (including myself) don’t always see them.

Sometimes I think we don’t see the miracles because we don’t think it is okay to do so.

Is it “okay” to believe that a Monarch butterfly is your reincarnated dog? (Weirdo!)

The hyper-cognitive part of us tells us we are wrong. It is not possible for a butterfly to be a former dog. (Your brain is playing tricks on you!)

We don’t let ourselves pay attention. Our culture of hyper-busyness tells us we don’t have time. (Get back to work! Who has time for chasing butterflies!? And thinking!)

So, we stop paying attention.

Please don’t stop paying attention. And really SEEING.

SEEING the miracle of nature, of beauty, of kindness. Of things that don’t make sense.

SEEING the people around us as human beings, and as miracles.

SEEING the person who is presumably homeless. The elder at the grocery store, slowly writing a check, while people impatiently stare at her. The person living with dementia who does not have the right words, but deep thoughts and feelings. Your neighbor. Your co-worker. Your family member.

SEEING the butterfly that could be a reincarnated dog.monarch-butterfly-2272163_1920Note: I was supposed to be working on the Being Heard series on ageism that I am writing. Alas, I had to pay attention to a butterfly/dog. Pardon the delay and stay tuned for a series of articles on the opposite of ageism.

How and Why I Became a Revisionist Gerontologist

As a change agent, promoting a different culture of aging and different ways to support each other as we grow older or grow with dementia, I have struggled with how to do this – how do we promote change? A wise mentor said to me that sometimes the best place to start is with yourself. To share your perspective through your story.

He asked, How did you change?

It is critical that this story is an authentic one, he stressed. In particular, it has to include the mistakes you made, and humility, in assuring each other that we will continue to make more mistakes. And that hopefully, as they become a part of our stories, we learn and grow from our mistakes.

So, let’s settle in for the story of how and why I became a revisionist gerontologist.

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Once upon a time I became a gerontologist. This “title” of gerontologist refers to a person who has an advanced degree in gerontology or aging studies. But what made me a revisionist gerontologist was something else. It was a paradigm shift.

Per the definition of revisionist:

A revisionist is “an advocate of revision; a reviser; any advocate of doctrines, theories, or practices that depart from established authority or doctrine.”

As a revisionist gerontologist I believe we need to change the paradigm of aging and dementia.

It is important for us all to realize that paradigm shifts are made, not born. I was not born a revisionist gerontologist. I grew into one.

How were the seeds planted?

I am a proud gerontologist. The academic field of gerontology gave me my title, and an important framework for me to think about growing older or growing with dementia. But the academic framework of gerontology is not the basis of my knowledge about aging and dementia. The basis of my knowledge about aging is from human experience.

Everything I know really grew from elders and people living with dementia who have sat with me and shared their stories.

So, yes, I have a degree in gerontology, but my knowledge is really from many years of having the honor of listening to elders – elders from all sorts of places – about their lives, their concerns, their wisdom, their joys. They are truly what has made me a gerontologist, and a revisionist one at that.

rev geronDon’t get me wrong. The academic study has been vital to my development. What it particularly gave me was a lens through which to be continually curious about aging, and to always question what we think we know. This is in the spirit of “critical gerontology”, which is really a thing.

criticalCritical gerontology helped my paradigm shift grow. It helped me see that perhaps there were some cracks in the field of gerontology. And that even within a field that is so well-intentioned, and so new, there is a need for gerontologists to continually be open to newer possibilities, and to create a culture of learning.

Really, to listen more. To pay attention.

I needed to listen more, with elders, with people with dementia, and with those who care for both.

So, I listened. I paid attention. I learned and grew from listening, and sometimes, not listening. And I saw some more cracks.

You see, the things I was hearing and seeing in being with elders and people living with dementia were raising questions to me. About how we saw older people and people with dementia, and how this paradigm of aging and dementia was being operationalized into systems that were not created from or with elders and people living with dementia, but for them.

By well-meaning professionals like myself.

I had been working in nursing homes and assisted living communities and I was very unsettled by what I was experiencing. They were so institutional, and there was very little focus on people as individuals.

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I found myself blindly doing what everyone else was doing because that was the way it was done. I found myself becoming institutionalized.

I thought I could do better. I thought we could do better. Yet, I felt powerless and overwhelmed with changing “the system”. So, I left long-term care.

I started working with people in their earlier experiences of dementia, what we have traditionally called “early stage”. I facilitated education and support groups for them and their care partners. As I really listened to what people were experiencing, and saw things from their perspective, I realized that, although it had been well-intentioned, I had been approaching people with dementia often from my perspective.

The more I listened to and spoke with people with dementia, learning what it was like to have dementia, including their fears, their struggles, and their hopes, the more I realized how much we really did not SEE people with dementia as whole human beings. We saw them as their dementia.

fashion-1295985_1280For years I sat and listened to individuals living with dementia as they shared their world with me. And my world changed.

I remember preparing for a presentation to a group of people living with dementia on the symptoms of dementia, and I realized that the way we had always talked about dementia, to professional and family caregivers, did not include the voices of people living with dementia. When I thought about the language we had used to describe people with dementia  – regular, normal people with whom I had been sitting and listening – I realized that I had to find another way to think and talk about this.

I could not talk to a group of people with dementia, describing the seven stages of the global deterioration scale to them, and explain how they are measured as humans on this scale – based only on their weaknesses and judged only by their medical diagnosis. I had listened and learned from their perspectives – that these “stages” denied them being able to think about themselves as individuals, and it caused us to not think of them as individuals.

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Sitting with people living with dementia, and learning who they were as human beings, as well as how they were living with dementia – struggling with it, and even living well with it – this was the greatest gift to my career as a gerontologist. It changed everything for me.

These experiences with people living with dementia taught me an important lesson, and a lesson that I had not really learned from my gerontology classes or textbooks. To SEE people.

People living with dementia sharing their lives with me was my gateway to being a revisionist gerontologist.

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It opened the gates. I found my tribe in Pioneer Network. I learned about culture change and person-centered care. I saw there were other ways to support each other as we grow older.

I became increasingly aware of needing to change the way we see each other as we grow older and grow with dementia, and that this starts with SEEING people as multidimensional individuals.

Being a revisionary gerontologist does not mean I have the answers. To me, being a revisionary gerontologist is, in many ways, about embracing imperfection, but challenging myself and others to do better for elders and people living with dementia. I am a work in progress. We are a work in progress.

Why am I sharing my story? We all have a story. There is a journey in each of us as we change the culture of how we see each other as we grow older or grow with dementia. Paradigm shifts are made, not born. And they live in our stories. What is your story?

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Both/And

I am reading Mary Pipher’s book, Women Rowing North: Navigating Life’s Currents and Flourishing as We Age. She says,

“For many of us, a combination of suffering and happiness is what defines this life stage and fuels our growth – we can describe ourselves as living in both/and terms.”

I so love that.

Last week in my Psychology of Aging class we had a spirited discussion on this very topic. A student brought up her frustration that when she hears discussions about abolishing ageism, she notices that there seems to be a need to hyper-promote the idea that “aging is positive”. She said what she doesn’t hear in these discussions is a “more balanced, holistic” view of aging. She laments that she feels like it is selling a version of growing older that is not authentic, at least not for everyone. She gets that there are gifts and wisdom, and all that jazz, she says. But that is not all what aging is.

It is both/and.

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As I am engaged in this discussion, I think about another conversation I have heard lately that reflects this struggle with both/and.

I read a social media comment in which the author expressed frustration with intergenerational programs in which children visit people in nursing homes. Her point was that this resulted in children having a poor image of growing older, perhaps even contributing to stereotyping older people, i.e. ageism. She suggested that children should be exposed to other examples of growing older, not “frail” people in nursing homes.

Certainly, children should be with all sorts of older people. And not just children, by the way. It is important that people of all ages see that there is no single story to the experience of growing older.

Yet, I couldn’t stop thinking about the message that is behind this. That living in a nursing home or living with dementia = bad aging/negative aging/failing. That these individuals somehow should not have a place in the story we tell about the experience of growing older.

I worry about this.

This comment reflects the story of living in a nursing home or living with dementia as primarily a story of loss, negativity, decline. Why is that the story? It does not need to be. One can live in a nursing home or live with dementia and have a story of growth too.

It is both/and.

The reason we promote positive aspects of growing older is to balance the prevailing negative perceptions of it. These negative perceptions are at the root of ageism, and develop into stereotypes that are generalized to older people, and result in us not seeing people who are growing older for their whole, individual selves. One way we have tried to eradicate ageism is to try to paint a different picture of growing older. This might be older people who are running marathons, practicing medicine into their 90s, writing books well into their 80s. All wonderful examples of the possibilities of growing older.  Sometimes, in the spirit of presenting a more “positive” view of growing older, we bring up the point that people living with dementia or in nursing homes are “not the norm”, i.e. “that probably won’t happen to you, that happens to other people!”.

So here is where I get worried.

Have we created a situation in which we have attached value to the experience of growing older, as being “good” or “bad”, or “positive” or “negative”?

So that the 80-year weightlifter or 90-year old doctor is “good aging”?

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And the person living in a nursing home, or living with dementia, or experiencing health challenges, is “bad aging”?

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We want to abolish ageism by dispelling the notion that not all people are sick and frail as they grow older, yet we cannot do this at the expense of downgrading people who are living with illness and disability as they grow older.

Anti-ageism is not about good aging or bad aging. It is about promoting the idea that aging is a multidimensional, individual experience. It is encouraging to see people as they grow older for all that they are.

We need to change the story of growing older so that it is not driven by decline. But we also need to acknowledge that people who are growing older do become ill, do develop dementia, do live in nursing homes. And they are not out of the game. We put them out of the game.

Isn’t it ageist to not include older people who are living with dementia and living in nursing homes in the story we want to create, assumedly because they are not the story of aging we “should” tell about “positive” aging? By virtue of trying to present a positive view of aging, and pointing out that most people do not get dementia, or most people do not live in nursing homes, this can diminish these lives, and not allow them the space to present their lives as positive as well as negative.

People living in nursing homes or living with dementia also could be part of a more balanced story of growing older, one that says that despite physical and cognitive changes as one grows older, they are still growing, they are still living well. Loss and change are real. But they are not the whole story. They are a piece of a story, of which a person is the whole story. And each story is different.

Not talking in a balanced way about growing older might also tread into dangerous territory of a denial of aging.

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If we only think about growing older as being about eternal youth, and with that all the things that we associate with youth, we are saying that growing older is “bad”, something to be avoided.

These recent voices have made me consider a question.

Why do we need to talk about growing older in “positive” and “negative” terms?

It is both/and.

Perhaps this is motivation for us to think even more deeply about how we do want to talk about growing older or growing with dementia.

I would like to challenge us to take this a step further. Let’s talk about the experience of growing older, or growing with dementia, as MORE than good or bad, or positive or negative.

Rather than polarizing aging as..

living in nursing home or having dementia = bad, and

not having dementia/not living in a nursing home = good,

…can we find a way of telling the story of growing older so that each person is valid, and their worth is not qualified by their health, disability, or address?

How else can we talk about ageism and how we need to change our culture of aging?

What would happen if we put less emphasis on physical and cognitive changes as we tell the story of growing older?

What if there were other ways in which we talked about what growing older means?

What if we told stories of people with dementia living well, just as much as we told stories of 95 year-old weightlifters and doctors? Those are all beautiful stories; why would we not tell them all?

What if a child visiting a nursing home did not represent him or her seeing decline, but life?

That would be because we saw that the people who live there are full of life, not full of decline. This would be because we focus on growth and possibility for each other as we grow older.

How do we get there? We have to start seeing people who live in nursing homes, who have dementia, who are growing older with physical challenges, as full of life.

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Being full of life is not all rainbows and butterflies. It is both/and. Like all of life. It is both loss and gain, struggle and growth. Being full of life is founded on the idea that each person is important, each person can live well, each person deserves a life of meaning and purpose.

When we talk about the experience of growing older, we could include all examples of growing older. We could recognize that the individual lived experience of growing older is unique and different to each person and that the experience of growing older is both good and bad for every individual. Whether you live in a nursing home or you live in a house, you as an individual have a right to be seen as a whole human being as you grow older.

Perhaps the thing that we should be most concerned about transcends health, age, and disability – LIVING with meaning. Even more than the challenges that we face, physically or cognitively, or where we live, or what we achieve, there is this undercurrent of the need for purpose and meaning that is central to all of us. This is a human need that is fundamental to every single person. And although it may evolve and change throughout our lives, it does not go away as we grow older. Whether we are a 95-year old marathoner, or a person living with dementia, or a person living in a nursing home. And what great stories this makes for us to tell about growing older.

Let’s not put up on pedestals one view of growing older as the right way to grow. Aging is both/and. It is a multidimensional experience that is not about being good or bad, or any of these value laden adjectives. Let’s embrace the process of growing older, for all the things that means, with the possibilities that it provides.

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