I Love You for What You ALMOST Are, Person-Centeredness.

I am worried. This is not surprising, as I tend to be somewhat of a worrywart. This is a quality I inherited from my grandmother and my mother, and I have worked really hard to perfect it. I like to think that worry can sometimes serve a useful purpose. For me, when worry festers, when it becomes a fiery knot in my stomach, it serves to alert me that I need to work out something. Otherwise, it becomes agitation. Festering, worrying agitation is not productive. So, I am going to attempt here to work out something that is on my mind. A lot.

I do not think person-centeredness has reached its full potential for people living with dementia. It is not everything it can be.

In fact, I am worried there is a total disconnect from what it could be.

Increasingly, person-centered values underlie how we support people with dementia. These values of individuality, relationship, choice, dignity, respect, self-determination, and meaningful living drive many of the positive changes that we see in how we think about, and create well-being for, people living with dementia.

Until it comes to “behaviors” of people with dementia.

Note: I am using the term “behaviors” in quotes, not because they are not “real”, but because this term has developed a very negative connotation for people living with dementia, and does not adequately articulate the complexities of expressions and actions. Although we all have behavior, both good and bad, the term “behaviors”, related to people with dementia, refers to anger, agitation, physical and verbal aggression, crying, etc.  – pretty much all the bad things many people unfortunately associate with people with dementia.

There seems to be a big disconnect between person-centered values and how we actually think about and address “behaviors” i.e. the way people act.

In other words, we suggest that we are practicing person-centered values, but our words and actions are saying otherwise.

There is a trend I have been noticing more and more. It is to talk about person-centered care of persons with dementia and at the same time use terms like BPSD (Behavioral and Psychological Symptoms of Dementia), agitation, wandering, sundowning etc., even sometimes in the same sentence.  It is not just the use of the words that is worrisome. It is the meaning that is behind them. The paradigm that these words reflect is not person-centered.

Why are you worried, you might be thinking. We are talking about person-centeredness – that is good, right?

Sure, that is true. Yet, the way we are talking about person-centeredness, related to “behaviors”, is totally at odds with person-centeredness.

In these contexts of “behaviors”,  person-centeredness is rarely reflected in the response – to try to understand things from the person’ with dementia’s perspective, to understand what they are telling us, to identify what they need, and, very importantly, to acknowledge that these expressions signal missed opportunities to enhance well-being for a person with dementia. That there are things we can be offering to a person with dementia that respond to their human needs of identity, autonomy, connectedness, security, growth, meaning, and joy (thank you, Eden Alternative and Al Power).

It is almost like we are saying, yes, we like the values of individuality, relationship, choice, dignity, respect, self-determination, and meaningful living! ……Most of the time!

Until a person with dementia is “agitated”. Then, person-centeredness does not apply.

However, person-centeredness is not situational. Person-centeredness INCLUDES seeing “behaviors” differently.

The best way to explain what is in my brain, and what is giving me anxiety, is to go through a few examples of things I have seen and heard that illustrate this disconnect.

“Person-centered approaches to wandering.”

“Person-centered strategies for sundowning.”

“Effectiveness of person-centered care for problem/challenging behaviors.”

If person-centeredness is built on the idea that we see the person, not the disease, that we try to understand who someone is, and their perspective, then we need to consider that these statements do not reflect person-centeredness.

It makes me uncomfortable that all those words are together in the same sentences. It seems like they almost cancel each other out.

“A person-centered approach to [insert labeled/problematic behavior or BPSD]” is inherently not person-centered for several reasons.

We need to consider that the terms we use to describe the way people with dementia act are fundamentally not person-centered, even if there are good intentions in terms of offering person-centered approaches to them. We are labeling the way a person acts, and positioning it as a problem, often a medical problem. When we do this, we are not motivated to seek the reasons why the person is acting this way, and to acknowledge that this “behavior” might be just normal human behavior, not pathological (a fancy way of saying it is due to disease).

“Wandering” is an example of a labeling term that we use to describe people walking around. However, the term “wandering” suggests lacking purpose. If it is simply a purposeless activity there is no reason to understand why a person is “wandering” – they are just wandering!  This is not person-centered.

“Sundowning” is another example of a labeling term we use. It describes people getting restless, frustrated, and maybe even angry at the end of the day. “Sundowning” is often described as a medical syndrome and people are medicated in response to it.

Describing how a person with dementia acts at the end of the day as “sundowning” is not person-centered. It ab-normalizes the way a person is acting and does not try to understand what it means for that person. Person-centeredness would include considering that “sundowning” is not necessarily directly the result of a brain disease (as in there is a sundowning center in the brain that is inevitably turned on by dementia), but that the cognitive changes that come with dementia might make it more difficult for a person with dementia to navigate the day, and leave them quite exhausted and drained at the end of the day. These very human responses might not be pathological, but normal for that person (or any person for that matter).

To label these actions contributes to non-person-centered thinking and responses. It medicalizes the way people with dementia act. It groups their actions into one category, without considering that these are individual expressions that are unique to persons, situations, how they are experiencing the world, what they are communicating, etc.

Related to BPSD, the person-centered approach to BPSD is to not call it BPSD.

There is another reason I am worried that these statements reflect a disconnect. When we describe person-centeredness primarily in terms of approaches, we are at risk of neglecting the bigger picture of person-centeredness, which is not only the specific practices we adopt, but the overall way that we think about a person with dementia, try to understand who they are, and learn what is important to them.

Person-centered approaches can become band aids. They are applied to the “problem”, they might even be individualized to the person, but they are only one piece. There is still the bigger issue of what is meaningful to a person and what it means for them to live well. Person-centered approaches are chipping away at the paradigm of dementia that has prevailed – the one that says people with dementia are broken, gone, problematic. But they might not penetrate the paradigm deeply enough to change it.

Person-centered practices, approaches, or strategies might actually not be person-centered, if they are disconnected from the bigger picture of person-centeredness.

Let’s look more deeply at “wandering” as an example. A person-centered practice might be described as “distracting” a person with dementia who is “wandering”, with another activity, so that they don’t “wander” anymore. This practice might or might not be person-centered; it depends on whether this practice is related to who the person is, what they like to do, and why they are “wandering” in the first place. A person-centered practice would take into consideration that wandering walking around is perhaps normal for that person, reflects their interest in going outside and getting fresh air, and can be accommodated safely. Providing something for a person to do might be person-centered if, for that person, walking around means that she or he is looking for something to do. If distraction is being used to just keep the person from doing what she or he wants to do, that is not necessarily person-centered (it might even be considered carer-centered instead). The bigger picture of person-centeredness would encourage us to understand what a person needs so that we can try to meet that need. Then we can also be more proactive about it. We would have a plan for how to make sure this person gets his or her walks.

“Person-centered strategies for behavior management of people with dementia.”

When we describe how we respond to people with dementia as managing the way they act, this is not person-centered. It is not person-centered because it is not considering what they are trying to tell us with their actions, what they need, or simply acknowledging that we all have a right to express ourselves. Also, managing the behaviors of people with dementia suggests that WE are in charge, and that WE need to change THEM.

Person-centered values would tell us that we need to try to see things from THEIR perspective. And that we need to manage OUR behavior to meet they where they are, rather than expect them to meet us.

When we look only at approaches that address, or “manage” specific “problem” behaviors, we are missing the opportunity to truly be person-centered.

I broadly define person-centeredness as a multi-dimensional focus on who a person is and what is important to him or her. In order to be person-centered we have to know a person, meaning who they were, who they are, and who they want to be.

If person-centeredness is about seeing the person as a whole human being, then labeling the actions of a person with dementia is not really seeing them as a whole human being. It is not describing the way they act but seeing them as an illness, or a problem, or a symptom. It is not person-centered.

If person-centeredness is based on an experiential model, meaning seeing things from the perspective of the person, then labeling their actions and expressions reflects that we are not seeing things from their perspective. Labeling implies that we are judging something from our perspective. It is not person-centered.

If person-centeredness is about trying to understand what a person needs, based on who they are, and many other variables, describing how a person acts as a problem/difficult behavior, BPSD, etc. has the potential to ignore what the person is communicating about what they need. It has the potential to dismiss their humanity. This is not person-centered.

We are moving towards a paradigm that reflects person-centeredness, but I am worried that we are going down the wrong path sometimes. I am worried that the old paradigm is still hanging on, and it is tarnishing the meaning of person-centeredness. It is just not there yet.

Remember how, in the movie Jerry Maguire, Dorothy says about Jerry:

“I love him! I love him for the man he wants to be.

And I love him for the man he almost is.”

That is the way I feel about person-centeredness right now. I love you, person-centeredness, for what you want to be and for what you almost are.

I think we can help person-centeredness get there.

We have to embrace person-centeredness in its entirety, and apply it universally. If we are putting people with dementia at the center, then education, research, and practice would reflect that people with dementia are individuals – whole human beings who are more than their diagnosis and more than their actions.

By putting people with dementia at the center of person-centeredness we are saying that the lens through which we see them, talk about them, support them, etc. reflects how THEY see the world, what is important to THEM, what THEY need. This is where we start. This puts us, as people supporting people with dementia, at the center, WITH them.

Then person-centeredness can be all it can be.