I am really proud to be a part of a group of advocates who are campaigning to #BanBPSD. I have written about BPSD before. I am also not the only one – there are many profound and eloquent writings about the movement to think differently about dementia, including articles from people living with dementia, Kate Swaffer and Howard Gordon.

BPSD, “behavioral and psychological symptoms of dementia”, is a term that is used to describe the following “symptoms” that occur in people with dementia: agitation, aberrant motor behavior, anxiety, elation, irritability, depression, apathy, dis-inhibition, delusions, hallucinations, and sleep or appetite changes.

Thinking differently about dementia includes the need to rethink how we currently frame the expressions of people living with dementia through a primarily medical/clinical lens by labeling them as BPSD. It is important to note that, by definition, a symptom is a sign of abnormality. So, when we use the term BPSD we are immediately labeling the way a person is acting as abnormal, and thus problematic.

Although it is important to change the language of BPSD, perhaps it is more important to explore and rethink the current paradigm behind BPSD. This paradigm suggests that expressions of people with dementia are meaningless, intolerable, and entirely a manifestation of brain pathology rather than reflective of one’s lived experience in a complex world (coupled with brain changes that make it challenging to navigate).

The term BPSD does not recognize that these symptoms can also be normal human expressions.

The term BPSD does not reflect the possibility that expressions of people with dementia demonstrate the resilience of the human spirit.

The term BPSD does not allow for the understanding of “behaviors” as problem-solving rather than problem-making. Here is an example of what I mean by this.

I was in a nursing home, and a woman with dementia was sitting by the nurse station. She yelled, “COME HERE!” every time someone passed, so she yelled it almost all day.

I watched as people walked by her, trying to ignore her. People even went the other way around the nurse station to avoid her. A person stopped and took her hand and smiled at her. She stopped. I heard someone label it as “attention-seeking behavior”. In part, they were right. She wanted someone to SEE her. However, the way it was framed was wrong. She was solving her problem of wanting to be seen, rather than making a problem. To see this as only problem-making is reflective of a current paradigm that labels these expressions so that they are seen as abnormal, meaning they are different from the supposed “normal” behaviors of people who are not living with dementia.

An antidote to this paradigm is to see people with dementia as us. To not see people living with dementia as “other”. To try to see things from the perspective of persons living with dementia, rather than only our perspective. To understand that their brain changes influence how they see the world, and thus how they interact with it, but that this is true for all of us.

As we embark on this campaign, I hope to see open discussion that challenges us to build a new paradigm that supports our common goal of creating better lives for people with dementia. I hope that this paradigm is born of the multi-dimensional, experiential perspectives of people living with dementia, as they are our greatest teachers. With that in mind, I wanted to share some stories that perhaps begin to explain how I came to thinking differently about people living with dementia, how they express themselves, and how we might better support them.

We are coming back from Tallahassee, where “Hal”, a person living with dementia, his wife “June”, my colleague Peggy, and I had met with elected officials to create awareness of the experience of dementia and the need for funds and support. As we sit down to dinner in a crowded, noisy restaurant, Hal is visibly upset and frustrated as he attempts to read the menu. He rather crossly tells June to order for him. Peggy gently remarks that it was a long day and asks if he is tired. Hal acknowledges he is and shares that he often feels this way at the end of the day. In fact, he says, he is so tired at the end of the day that sometimes he is angry. He says he literally sees red. He yells at June sometimes during this time, and he feels terrible about it. But it feels like he is unraveling, after a long day of keeping it together.

Is this what we call “sundowning”? Or is this just a normal response to the extreme amount of energy it takes to focus and function when you are living with dementia?

I am facilitating an “early stage” support program. It is me and eight men living with dementia who have been meeting for over 5 years. They are in deep discussion about a court case I presented to them – specifically, was this person guilty? There is joking, seriousness, and storytelling. In the next room, their wives are meeting, and I later learn that they were talking about the lack of decision-making ability of their husbands. In particular, they were sharing how upset their husbands become when they tell them they can’t do something, or their anger when they help them. I reflect that my relationship with these men is based on facilitating what they can do, and that their wives are struggling instead with their losses. They do not see what I am able to see with their husbands.

Do people act differently when they are approached as if they are deficit? What it is like to have a spouse do everything for you after years of you doing things on your own? Is frustration, depression, anger a natural human reaction to losing control?

“Maria” is living with dementia. She tells me that she is no longer on autopilot anymore. That it is like she is driving a stick shift. Except she is really bad at driving a stick shift. People around her either tell her she is doing things wrong, or they try to do things for her. She tells me how she is frustrated and upset all the time. At herself. At others.

Would we not all feel extremely irritated if everything we did was difficult? If we could see in people’s eyes that we were failing at things we previously did with ease?

I am meeting with “Anna”, who is living with dementia. We are coming up with a plan for her to continue to do the things that are important to her. She shares that she does not leave the house very much anymore. She does not feel she can do anything “right” anymore. She is embarrassed. She does not want to be a burden to her family.

Is this apathy? Or is this a normal reaction to adjusting to difficult challenges that threaten your identity and autonomy?

I am walking through an assisted living community with the Director. We pass “Paul”, who is sitting on the couch and quietly reading a magazine. The Director says to him, “Paul, I heard you tried to cut open your window using those nail clippers. We had to take them away because you cannot do that.” Paul says, “WHAT????!!!! You are the one who took them? You filthy @#$%^&**.” The Director says to a nurse, “We need to get him a psych eval. That is not appropriate.” “That is not appropriate, Paul!” she calls to him.

Is Paul the combative one?

My friend is telling me that her dad, who just moved into an assisted living community, is on the verge of getting kicked out. They say he is agitated and combative. I ask what happened. “They say he is angry all the time,” she says. “Did they give you an example of when he was angry?” I ask. “He wants to go home, and they told him he couldn’t. And he just lost it.”

Is this unreasonable behavior? Or, is this just unreasonable to the staff, because they don’t want him to leave? Is it abnormal to leave a building? Is it normal to have strangers tell you that you cannot leave a building?

I am working in a “memory care unit” in a nursing home. “Jack” just moved in. He is a world-renowned architect. He does not want to be there. He is repeatedly told that he is staying at a hotel for a while. Occasionally he orders room service from me. One day I hear him yelling. His care partner went into his room to help him shower. He is appalled that someone would dare come into his room and suggest that he needs help bathing. When the care partner insisted, he pushed her out of the room.

Is this combativeness? Or a normal reaction to a really strange hotel service?

I am picking up “Jeannie” from the Houlihan’s down the street. Jeannie lives in our memory care neighborhood and “escaped”. When she sees me, she smiles. I ask her how she is. “Just fine,” she says. “What a lovely day,” she remarks. It is perfect outside. Jeannie has grass stains on her jeans. She is an avid walker.

When it is beautiful outside, I like to “wander” too. Sometimes I like to sit on the grass and just be. I do not feel this is abnormal.

These are the faces of “BPSD”.

The more that I heard from people living with dementia, the more that I saw them as whole human beings, just like me, the more I became unable to see them as patients, abnormal, broken. I became unable to see their actions and expressions as abnormalities and problems, because I saw myself in them. For me, this was the starting point for thinking differently about dementia.

I have a new friend. She is 93. I have been having coffee klatches with her. I find her fascinating. She has been telling me her story. There is nothing linear about her story. There is also nothing linear about the way she tells her story to me. As I listen to her, she takes me along on a tangled, curvy journey of her life. I feel the twists and turns in how she tells me about it.

As she is telling her story she goes back and forth between different languages, in a fluid and seemingly necessary way. I try to follow along as best I can. I don’t stop her because I feel this is the way she has to tell her story. Sometime her native language does better justice to it than her second language. I go along with her wherever she takes me, and then she always seems to conclude with some powerful, profound statement. Something that pulls it all together and nearly knocks me off my chair with the strength of it. It is a roller coaster for us both, and I hang on for the whole ride.

Maybe there is a deep lesson in this. Could my friend’s story of her life, as an entirely coherent yet messy narrative, be another way we might think about the experience of growing older? As a story that is not neat and clear and step-wise. But one that works together to make us who we are.

In many ways we like to think about growing older in a very linear way. By linear, I mean moving along in a single, straight line and having only one dimension (time). Like this chart.

Clearly, as time increases we grow older. So, it is easy to think of it as a linear process.

Evidence that we might think this way is in how we talk about growing older as being entirely tied to chronological age (e.g. 65+), assumptions that all older people have similar experiences, and one-size-fits-all policies, products, and services that are expected to meet everyone’s needs. You know, ageism in general.

However, there is nothing really linear about growing older. It is quite multi-dimensional, on every level. There can be great fluctuations. Up and down. Sideways. All over the place. Different for each person. More like this.

This resonates with me.

This also happens to be the way my brain works. I try to make it linear sometimes, to force it into a neat line. But it is all over the place. And I have learned to lean into it a bit. An idea comes, and I ride with it all over the place. Then sometimes I drop it for a while, and I pick up some other pieces that might go along with it, or might not. Then, I often need to rest. Let go of all the chaos that is happening in there. And then I come back to it, and see what fits together. And lots of time I have created something new. I have had to say goodbye to some things, but this is to make room for new things.

Hmm. When I have talked to fellow humans who are growing older, it seems like aging is more like this. A tangled, beautiful mess. And as I am growing older, I feel this to be true, particularly as a life transition.

When I think about it, we sometimes talk about what it is like to be an elder. But we don’t talk very often about the process of growing older, meaning the long journey from early adulthood through middle adulthood to elderhood. Certainly, we are all growing older from birth. But, in reality, most of us probably don’t feel that we are “aging” until middle adulthood. We are on this incredible journey of living and change. And it is messy.

Sometimes it seems as if the expectation is that one day, you magically wake up, and you are “old”. Some might think that this happens at an arbitrary age, like 75. Maybe some think it is when you are no longer “independent”.

But it does not happen that way. We GROW older, meaning there is a process. And from everything I hear from elders, the experience of growing older is a multi-dimensional process – complex, tangled, and messy. Just like life in general.

To be clear messy is not a “bad” thing. Maybe it is not “good” either. We might be tempted to qualify the experience of growing older as “good” or “bad”;  these linear terms do not adequately represent the experience.

If we consider that the process and experience of growing older is not linear, then perhaps we have to consider that the acceptance or embracing of growing older is also not linear.

We are a society of aging-deniers. “I’m not old.” “I will never be old.” “Young at heart.” Yet, we grow old. It seems that while we are busy denying something is happening, it is happening. And we miss the opportunity to really live it.

Maybe if we allowed ourselves some messiness in accepting growing older, we would be better equipped to accept rather than deny. Maybe even embrace growing older.

There is really no one way to grow old.

For me, growing older, and my relationship with it, is messy. As a revisionary gerontologist, I do believe that growing older is a beautiful process that brings many gifts. I believe it is the process of becoming oneself. And, it is also scary, frustrating, emotional, and not easy at times. This is okay.

On one hand, I think wrinkles and grey hair are beautiful. They show a life lived. On the other hand, I do not want grey hair right now. If you look in my medicine cabinet, you will see a nice balance of non-toxic moisturizers and face washes with glycolic acid and retinol (“youth-enhancing products”). This is my paradox of embracing growing older.

I look in the mirror and I see me. I see everything I have experienced to get me to this place. And I am in awe. But when I look at pictures of myself 10, 20, 30 years ago, I notice I look different now. And there is a little bit of grief for what has changed. There is also pride in who I am now and how my face and my body reflect a life lived.

I am being very honest about this. And I am somewhat ashamed at my paradox. After all, I am a revisionary gerontologist. Yet, perhaps this is part of the process of growing older. It does not happen overnight, nor does it happen in a linear, organized fashion.

The culture of aging in which we live is so strong, with its negative messages and unrealistic expectations. When I think about myself in it, it is like I am in a jungle, hacking my way through this maze. Of course the jungle is beautiful, I tell myself. Oh yes, that snake is just stunning.

I know I am supposed to love all of it, but I don’t. At least not all of the time. (Note: This metaphor is NOT comparing growing older to a snake. It is about seeing beauty in things, even natural things, that also make us afraid.)

Just like we don’t wake up one day and “become old”, I don’t think we wake up and really embrace growing older. This acceptance is messy too. Perhaps it is a necessary messiness. Where we have to hold these ideas in our brains, about what is important, what our physical selves mean to us, how we confront and live with changes in our bodies, our brains, our relationships . And let some things go. And embrace others.

What I don’t think we should do is force this messiness into a straight line. Just like it is probably not a good idea to tell anyone how to age, it is probably also not a good idea to tell anyone, or ourselves, the one correct way to embrace aging.

Yes, and.

The paradigm of growing older needs to change. We need to create a new narrative of growing older. Even if it is a messy one. Maybe this narrative addresses the possibilities and meaning we derive from the ups and downs of growing older. It promotes the gifts of growing older.

We need to have these ongoing conversations with each other. To resist the temptation to make things neat and organized and step-wise. To listen. To honor each of our lived experiences, both in terms of growing older and our acceptance or embracing of it. Maybe if we are willing to share our own messy stories with others, we become less afraid. And maybe there is comfort in knowing that everyone has their own tangled mess.