Hi. My name is Sonya and I have behavioral and psychological symptoms of Sonya (BPSS). Yes, it is true. You see, sometimes when I am doing something I don’t want to do, I get agitated. And then there are the times when I am tired or not interested and I have apathy. The other day I was combative when my husband tried to feed me a strawberry and I pushed his hand away (I really do not like being fed by others, although I really like strawberries.). I irritably yelled at my computer for several minutes this morning when I read the headlines. I am anxious any time I have to drive in this heavily congested area. Unfortunately, I also am paranoid. I KNOW that my husband took the car keys and hid them from me.

Maybe you are saying, “Sonya, what are you talking about? BPSS? Why can’t you just say you are angry or anxious? Why the labels? You are so weird.”

Maybe you are also wondering to yourself whether you have some form of BPSS. “I get angry too”, you might be saying to yourself. In fact, you are getting more angry and anxious as you read this. “Sonya, where are you going with this?” you are thinking nervously.

Have you noticed that we take actions of a person with dementia and ab-normalize and medicalize them? I have.

There is a term, called Behavioral and Psychological Symptoms of Dementia (BPSD) that is used to describe the following “symptoms” that occur in people with dementia: agitation, aberrant motor behavior, anxiety, elation, irritability, depression, apathy, disinhibition, delusions, hallucinations, and sleep or appetite changes.

A 2012 study¹ said that 90% of people with dementia have BPSD. Hmm. What percentage of the general population has BPSD? 100%?

I experience these symptoms and as far as I know, I do not have dementia. So, if I have them, and you have them, what are they symptoms of? Maybe of being human? So, because I do not have dementia, they must be Behavioral and Psychological Symptoms of Sonya. And if we are going to describe them that way for people with dementia, it is only fair that I describe them this way for myself.

Note: For the purposes of this article, I will refer to these “symptoms” instead as actions or expressions.

In everyday life we use these terms to describe our actions. They are, for the most part, considered “normal”. Yet, we seem to have a double standard when we are talking about people with dementia.

A person without dementia might be angry because he does not want to wake up. But a person with dementia is agitated when he does not want to wake up.

A person without dementia flirts with the waiter and it is just flirting. A person with dementia flirts with the waiter and she is disinhibited.

I am in no way minimizing the seriousness of these expressions/actions. These expressions are very distressful for both people with dementia and those who care for them. They are very real. But I want to suggest that they are not abnormal. They are human responses.

Being with many people living with dementia, and those who care for them, has taught me that living with dementia is very, very hard. People with dementia are doing the best they can. They are trying their best to make sense of everything and everyone around them. Because they are human, of course they are going to experience the same human emotions as any of us. If not more, because of the challenges of living with dementia. Their actions are expressions. Normal, human expressions to what are often experienced by them as abnormal situations. I have sat with many of these humans, and heard their experiences. They made me change the way I thought about their “behaviors”.

For these reasons, and more, we need to reconsider this term of BPSD. Perhaps more importantly, we need to think about the meaning behind it.

I understand why we use this term. We needed a way of describing some things we were seeing, so we created a term. But there is a danger in this term that is bigger than these words, I am afraid. Because a term is often, if not always, a reflection of a paradigm.

When we define these actions and expressions as symptoms, we do several things:

• When we describe these expressions as symptoms, we medicalize them. We also then frame them as “abnormal”.
•  We are suggesting that the only explanation for them is the underlying medical condition of dementia. Then we are less inclined to try to understand the reasons behind these actions. They are “just what people with dementia do”. When we don’t understand the reasons, or what people are communicating to us through their actions, we are not able to meet their needs.
• When we medicalize expressions that might be normal for the person and his or her situation, although abnormal to us, we also contribute to a paradigm that sees people with dementia as different than us. Because WE certainly don’t ever have those expressions, but people with dementia do because of their dementia. A very concerning possible consequence of seeing people as different than us, “othering” them, is de-humanizing them.
• When we frame expressions in medical terms, as a medical problem, the next step is to try to address them with medical solutions. This might mean using antipsychotics unnecessarily.
• To take this a step further, when we frame these expressions in medical terms, even if we are looking for non-medical ways of addressing them, we still see them as medical problems to be addressed by these “non-pharmacological” solutions. The challenge with this is that we are still limiting ourselves to seeing these expressions through a medical lens, rather than trying to understand what they might mean for that person, and trying to address the underlying reasons behind the expressions, whether they be unmet needs, or emotional distress. Even a non-pharmacological solution can be a band-aid and not address the reason behind a person’s action and what it means.

We are already seeing ramifications of this paradigm in how we view and treat people with dementia. One of these areas is in the use of antipsychotic medications, which are used to address BPSD in people with dementia. A recent report by Human Rights Watch reiterated the overuse of antipsychotics for people with dementia. The article pointed out various possible reasons for overuse. Unfortunately, they are not untrue. Not having enough staff and training to meet the needs of people with dementia is unfortunately real in too many cases. In some cases, these medications are used for convenience. However, in my experience, I think it is more often due to people not knowing how else to respond.

Yet, I think it is something much bigger. It is a reflection of this paradigm of dementia – the story of dementia that we have told ourselves for too long. This is the story that tells us that the way people with dementia act are symptoms or “behaviors”. The story tells us that not only are behaviors bad, they are not normal. Because they are abnormal medical problems, we need to address them with medication.

However, what we are neglecting in this story is this – the way people act, i.e. behaviors, are not abnormal for them. In many cases they are perfectly normal responses to how a person is experiencing the world around him or her. They are an expression of what a person is experiencing, what she or he is telling us, and what needs we might not be meeting for a person.

Yes, it is true that there are changes in the brain that happen as a result of various types of dementia that influence the way a person acts. Parts of the brain that regulate emotions are affected, making it more difficult to control various emotions. There are indeed various part of the brain that cause a person with dementia to see and experience the world differently. So yes, dementia changes the way we might act.

I am also not dismissing the intent behind terminology such as BPSD – to attempt to understand and help people with dementia.

It is for all these reasons that we have to think differently. There is too much at stake, and we want and need to do better for people with dementia.

This term of BPSD can perpetuate a paradigm of dementia that does not honor the human experience of dementia. Who people are as individuals. What they need. What is important to them.

It is time for a new paradigm. One that sees people with dementia as no different than us. That strives to see things from the perspectives of people with dementia so we can find better ways to support them. A paradigm that truly sees people with dementia as whole, not broken. And one part of building a new paradigm is to critically and respectfully question how we are describing and thinking about the way people with dementia act.

Note: I am well aware that I am not alone in this desire to change the paradigm of dementia. I am being heard here, with my own voice, but know that there are many who are in this together. They are people living with dementia, their care partners, and people whose professional lives are dedicated to making life better for people with dementia. I learn from them every day. Rather than speak for all of you, I hope you will chime in, as much more needs to be said.

¹Cerejeira, J., Lagarto, L., & Mukaetova-Ladinska, E. B. (2012). Behavioral and Psychological Symptoms of Dementia. Frontiers in Neurology, 3, 73. http://doi.org/10.3389/fneur.2012.00073

So, I have been sitting around all week, sick with the flu/cold/crud, coughing incessantly. Yuck. Our dog keeps looking at me, as if to say, “Why are you barking all the time?” Now he knows how WE feel.

Whenever I am sick, I think about people who are living with chronic illness. Or any illness, for that matter. I think about them because here I am, feeling unwell all day, for just several days. Imagine feeling unwell every day. Or most days. Imagine being in pain most of the time.

There have been periods of time in my life in which I have experienced this. I had regular migraines for several years. I had chronic pelvic and hip pain throughout my late teens and twenties. I remember being surprised at the emotional aspect of pain, one that no one talked about, but was always there. Frustration, joy, sadness, anger, gratitude, hope, hate.

I am certainly not comparing these experiences to others’. But the fact that we all experience illness and pain, in different degrees, does give us perspective, and perhaps a foundation for empathy, in trying to understand the experience of illness and pain. It is a universal human experience.

When I think about illness and pain, I am struck by the often disregarded emotional aspect. I am made aware of this, not just through my own human experience of pain and illness, but through the many people I have sat with who are ill and in pain.

There are so many emotions you hear when you are with people who are unwell. Some are clearly articulated. And some are just under the surface when people are struggling to appear “normal”. The emotions of feeling weak. The sadness and loss of not being able to do the things you want. The anger and gratitude of dependence on others. The overall emotional energy it takes to function. The joy in moments when you feel GOOD.

And, I think about how we do not really, truly take into consideration this emotional aspect of not being well. Of course, there are overall concerns about our lack of attention to mental health. A lack of attention to depression and anxiety, and other conditions. But I’m talking about more than that. I mean the everyday, wide and deep, emotional experience of being unwell.

I am concerned about how/whether we are aware of, and attending to, the emotional experiences of people who are ill and in pain who are growing older, who are growing with dementia, who are living in long-term care communities, who are living in our neighborhoods. How much of this emotional experience of being unwell is even considered in how we see them, how we interact with them, what we ask of them, and how we can better support them.  I mean, especially for people living in nursing homes, nearly every person is there because they are living with an illness. And, for many of them, they are feeling unwell. Certainly, this has got to color their whole world. But are we in the same world with them?

I can remember working in nursing homes and assisted living communities, and inviting people to join some group activity. It is such a normal interaction in these settings – my job is to convince this person to be involved in activities (benevolently) and I expect I will be met with some level of misgiving. And I remember having these almost existential moments in which I would see myself asking an elder, 96 years old, with severe arthritis, nearly blind from cataracts, to join in the trivia group. On so many levels, it became strange. But I would every so often wonder, how does she have the emotional strength to do this? To get up every day. To keep going. And now I am asking her to be a part of a trivia group. What am I doing? Is this okay? I want to help her. But am I making it harder for her? Am I making her dig even deeper into her well of emotional strength to come to this game? Are there other things she would spend that emotional currency on?

Do we really acknowledge the everyday emotional experience of being unwell, in the sense that this is an experience that likely underlies everything in a person’s world, and perhaps influences every aspect of their living? And how is this manifested in our everyday interactions with them? Are we aware of how much it is there, this emotional undercurrent?

Wendy Lustbader, who I am proud to consider a part of my world, wrote this amazing book called “Counting on Kindness: The Dilemmas of Dependency”. In it she says:

“Those who have had their wings clipped by illness or old age feel the need to do something “crazy” to remind themselves that they are still able to exert influence, if only over their own domain or their own body. This need conflicts with their feeling obliged to give full cooperation to their caregivers. When other means of repayment are lacking, compliance does become the only resource that can be exchanged for sustenance. Those with personality styles that prevent their squelching themselves in this manner lack even the power of compliance. Instead, they turn their helplessness into its reverse, commanding their helpers to follow their exact specifications and blasting their helpers with anger when their directives are not heeded.” (page 21)

Maybe this is how the emotional experience of people who are unwell manifests sometimes. In demanding autonomy. On some level. On levels that seem small to us, but are not small.

Or maybe it looks like this:

“Mustering the courage to usurp gloom is not a once-and-for-all attainment. No sooner do we become accustomed to one set of conditions than illness imposes others. We have to keep devising satisfactions and then releasing our hold on them. Swinging from gratitude to bitterness and back again, the cycle moves with a fierce complexity. We either acquire enough flexibility to open ourselves to new consolations, or bitterness prevails.” (page 42)

Perhaps, then, what we see is, “I don’t understand. She liked going on walks last week. Now she yelled at me this morning when I said I was ready for our walk, and this afternoon she asked me to go with her outside.”

So, what is there to do?

I am not suggesting that we need to break into the emotional world of others, to feel what they feel, to expect they tell us what is happening in their heart and mind. To “fix it”. I am not sure that is for us to do. We do have to listen for it, though.

We have to honor that there is an emotional experience of being unwell. It is likely larger than we know. It is complex. It is not all negative. And, as for all of us, this emotional world in us is so deeply and personally a part of us. To not acknowledge it is to not acknowledge another universal human experience. And that can lead us to DE-humanizing.

The lovely artwork in this post is from Gerd Altmann.