A large part of my work is changing the way we think about dementia. In order to change our thinking, we need to question what we already “know”.

When we see information about dementia, particularly if it is from a popular source, we might assume that it is “the answer”. Yet, we need to also keep in mind that our knowledge of dementia is constantly evolving, dementia is complex, and the way we attempt to describe what dementia is might not be adequate.

It is time that we question how we explain dementia, especially on public sources of information that are trusted. We need to consider that the information out there might be misleading, is not fully explained, might only provide one perspective, usually a medical one, and is not person-centered.

Maybe you are questioning what I mean by questioning how we explain dementia. I am glad you are questioning! We need to question.

Let me start by clarifying that when I say we need to question how we explain dementia, I mean both how we describe dementia overall as well as its causes, like Alzheimer’s. For purposes of simplicity I am going to just use the term “dementia” in this article. Just know I mean dementia and its causes.

There is already a long history of confusion about how we explain dementia, especially related to the difference between dementia and its causes. Most information sources will now make this distinction, which certainly helps. However, I am going deeper and talking more about the way we describe dementia and its causes– What is dementia? What is Alzheimer’s? What happens when a person has dementia? What are the changes a person is experiencing?

It is important to rethink how we describe dementia because the way we talk about dementia, even in its basic description, sets the stage for how we think about people with dementia and how we support them.

What are some examples of descriptions about dementia that we need to rethink?

If you look up “What is dementia” (or “What is Alzheimer’s) usually a description will include information on signs and symptoms. Typically, a list will include things like memory loss and confusion. And then it will also include things like personality changes, inappropriate behavior, agitation, paranoia, and hallucinations.

This is, at minimum, confusing. Maybe even misleading or not entirely accurate. What do I mean?

Let’s start with the word “symptom”. Part of the challenge in how we describe dementia is in using the word symptom to describe what we see in people with dementia. Although it is a medical term the word symptom itself is pretty open to interpretation. It is generally defined as subjective evidence of disease or a medical condition. It is thought to be something experienced, as opposed to observed. However, in everyday use, symptoms might be considered anything noticed about (or by) a person that indicates “something is wrong with them”.

It is confusing to use the term symptom when explaining dementia.  It allows us to call anything that a person with dementia experiences, or is observed by others, a symptom. Even if that thing is a normal human behavior. Even if it is not really physiologically connected to a change in the brain.

Sometimes I find it helpful to think about other medical conditions, and how we treat them, when I am trying to understand something better in the dementia world. So let’s use the example of migraines. I get migraines. When I have a migraine, I would say my symptoms are head pain, visual disturbances, vomiting, stomach irritation, etc.. I probably wouldn’t report as symptoms the other things that I am also perhaps experiencing – irritability, self-isolation, apathy, avoidance of social interaction.

It would be confusing to say that symptoms of migraines include irritability, self-isolation, etc. Right?

They could be related to my migraine, because when you feel that bad you are irritable, self-isolating, and avoiding social interaction. But they are not directly related to the physiology of migraines. In fact, they might be related to many other things, some of which might not be about my migraine at all. As a symptom, how would irritability help diagnose my migraines? It is not uniquely symptomatic of migraines.

Back to dementia.

Similarly, having “agitation” or showing “paranoia” may or may not be related to dementia, or might have many other explanations. Yet, they are described as symptoms.

Confusing.

It is debatable that these symptoms are directly related to changes in the brain that are the result of brain injury from the various causes of dementia. . On the other hand, memory challenges are more clearly connected to changes in the brain. Yet, when we hear all of these things described as symptoms, one assumes that they are all direct medical manifestations of dementia. Doesn’t it seem confusing to describe dementia in a way that puts all the things you are experiencing in the one bucket of “symptoms”?

What is a symptom, really? Is this a meaningful way of describing dementia? Is it helpful to say a symptom of dementia is paranoia or suspicion of others? Wouldn’t it be more helpful and, perhaps accurate, to explain that a person with dementia might accuse family members of stealing or lying, and that this is because a person is trying to make sense of the world around him or her. This is not a medical symptom, but something that might happen.

Wouldn’t it be more helpful to actually describe the cognitive changes that a person might experience? That in order to be diagnosed with a neurocognitive disorder a person will experience challenges in these areas of cognition, and that this looks different for each person? Do we need to frame things as symptoms?

As we get deeper into the descriptions of dementia, we then also need to rethink how we talk about some of specific “symptoms” themselves.

Like “personality changes” as a “symptom” of dementia.

First, what does “personality changes” really mean? We all act differently in different situations and sometimes we change. Personality psychology has long found that personality is about BOTH stability and change. In other words, some aspects of our personality change throughout life, and some do not. We go through situations that might require or influence personality change, and then we also have periods of personality stability. Personality is not set in stone for any individual. Saying personality change is a symptom of dementia suggests it is pathological. This is confusing.

Second, couldn’t there be many reasons why a person is acting differently, particularly if they are experiencing cognitive changes? If I am having difficulty making sense of things because parts of my brain are working differently, due to a disease or condition or injury, isn’t it possible that I might act differently? Perhaps to an outside person, it seems that my personality has changed. But is this a direct cause of dementia? Or is this a normal human response and maybe adaptation to cognitive changes?

Certainly, there are parts of the brain affected by types of dementia that might directly influence how we are acting. Maybe the part of our brain that helps regulate our emotional responses, such as anger, is impacted. So, it might be easier in some experiences of dementia for a person to get angry. But this could the same for my migraines. Perhaps the pain experience of migraines results in a lessened ability to regulate my emotional response of anger, so that when my husband walks into my nice, dark room where I am recovering from my migraine, and turns on the light, forgetting I am in there, I yell at him in anger. That would be a personality change for me. But not pathological.

What difference does this make?

Here is what I see happen.

A person goes to the internet to find information on dementia as she is worried about her husband. She looks at the symptoms and is alarmed because he is definitely having difficulty concentrating and remembering things. And, then, she sees personality changes as a symptom of dementia. She thinks back to last weekend, when they were in church. Her husband is an usher and in the middle of the service he became very confused about what he was supposed to do. He did something incorrectly, and it actually stopped the service. She was embarrassed and tried to help him. He became very angry at her and yelled at her to sit down and get out of his way.

Personality change! Yes, that is what her husband is showing.

Her husband is diagnosed with vascular dementia. His cognition gets worse, and she continues to care for him. She notices that there are other things about his personality that have changed. He doesn’t want to socialize at all anymore. He blames her for things she hasn’t done. These are all medical symptoms of dementia, she thinks. She begins to believe that the husband she knew is not there anymore. Everything he is and does is dementia. This man is a stranger, and her husband is gone. She stops doing things with him, socializing with him, and just focuses on his basic physical needs. Her husband begins to “resist” her care. He tries to push her away one day when she tries to give him a bath he said he did want. This supports her belief that this is not her husband anymore.

No description has explained to her that another way of looking at her husband’s actions (“symptoms”) is that he is likely frustrated, scared, angry, embarrassed, sad. That there are reasons behind his actions, including cognitive changes that cause him to experience things differently. That maybe it is not so much that he is no longer there, or the person he was is gone, but that he is adapting to his changes. Just like we all do. Maybe he is an evolving version of himself, like we all are.

What would their experience be like, how would it be different, if she did not read about personality changes being a symptom of dementia?

We need to be better in how we explain dementia. It is the words we use, and it is also the meaning they hold. We need to consider how to apply the paradigm shift of person-centered thinking to a definition of dementia.

Here are just a few ways we can do better in explaining dementia:

• Consider what we mean by “symptoms” and the possibility of an alternate term.

• Avoid pathologizing normal behaviors.

• Differentiate between core cognitive challenges of dementia (such as challenges with memory, attention, executive function, etc.) and other experiences of dementia that could be reactions, adaptations, or have alternative explanations.

• Describe the variability and individuality of a range of cognitive challenges, being clear that each person experiences dementia differently, depending on many different factors, including the cause of dementia.

• Include the emotional component of living with dementia and what that might look like.

• Use an experiential lens in defining dementia so that the definition includes not just what others observe in people with dementia, but what people with dementia themselves experience. For example, an experiential definition of dementia might include something like: “People living with dementia report feelings of frustration, embarrassment, sadness, anxiety, etc. as they cope and adjust. People around individuals with dementia might feel as if they are acting differently than they typically do. Each person with dementia is adapting in their own way to the challenges of dementia and we can support them to live well.”

A new way of explaining dementia would reflect that a person can experience cognitive challenges AND be whole.

So, what do we do? Our voices need to be heard. Question the descriptions of dementia that are out there. These explanations of dementia reflect the paradigm of dementia that exists – one in which we stigmatize, label, other, and pathologize people with dementia. This paradigm is not working. We need a new one. And it starts with a new way of de-scribing dementia.