Navigating The Maze of Aphasia in Dementia

For the past decade I’ve been working as a Dementia Art Therapist for people experiencing a variety of symptoms caused by their dementia related illness. The one symptom I’ve always found intriguing is aphasia. 

In this post I will speak from personal experiences and try to put them in context of the disease behind it. You’ll also read about how I’ve found the benefit of artmaking incredibly impactful in giving a voice to people who might feel their voice has been erased.

If you’d like to skip ahead click on the links below:

Dementia and Aphasia
Aphasia Progression
Therapy for Aphasia
Case Study: Aphasia Art Therapy Session

Dementia and Aphasia

The word dementia appears to have become a catch all word and I’ve noticed that some people see it as a disease of forgetfulness, leaving other symptoms behind. That isn’t the case. Dementia is actually a cluster of symptoms and not a singular symptom of forgetfulness. 

Dementia is a symptom of a disease that can affect a person’s ability to reason, remember and rationalize. There are over 100 diseases in which dementia is a symptom. Some of the many symptoms can include trouble with concentration, confusion, apathy and change in personality. 

For this article I will reference dementia-related diseases like Alzheimer’s and FTD  and their relation to the symptom of aphasia in dementia. 

Aphasia as a common symptom 

When it comes to verbal communication, some people may have challenges from the very beginning of their dementia-related diagnosis. This will often be referred to as aphasia. Aphasia is a loss or deterioration of language. A person may not be able to communicate due to an inability to speak themselves and/or an inability to process what someone is saying to them to create a response.   

There are several different types of aphasia and this is due to how and where the aphasia started. 

Aphasia in Dementia Progression

For those who begin to experience aphasia with a dementia related diagnosis the prognosis is that the aphasia will get worse. Their verbal language will continue to deteriorate as their brain function deteriorates. Recovery is unfortunately not possible, as there are no cures for diseases like Alzheimer’s or Frontotemporal Degeneration. 

In some cases, language skills may be regained in a person who has had a stroke and may be diagnosed with Vascular Dementia. Outcomes will vary based on where the stroke has occurred and how the aphasia impacted them initially. source

To complicate our understanding of aphasia, it’s important to note Alzheimer’s Disease and Frontotemporal Degeneration have different journeys. The way a person loses language and its path are different. 

Alzheimer’s Disease Progression of Aphasia

In Alzheimer’s Disease a person at first may appear to be forgetful and you won’t notice their loss of language. Over time as that forgetfulness increases, other symptoms will start to appear. For some people, aphasia is present throughout their entire disease process. For others, aphasia progression is most noticeable towards the end stages of Alzheimer’s. 

In the end stages of Alzheimer’s Disease a person may no longer speak. They may or may not be up and walking with a walker, or in a wheelchair. They may appear to not see you or make a connection with you unless you are very close to them. Some have described this as appearing “ghostly”. They may respond to you verbally with sounds or singular words that are hard to understand. 

Frontotemporal Degeneration Progression of Aphasia (FTD)

In FTD, aphasia may be the first symptom that is noticeable. This may fall into the Primary Progressive Aphasia (PPA) category. A person’s memory may not appear to be impacted in the beginning. It’s important to note that the aphasia may not only affect their ability to speak, other symptoms may appear as well. 

At first the person may appear to use words that don’t exactly fit in a sentence, but can be implied to finish a statement or get an idea across. Over time language skills appear to get worse and it will become more noticeable that something needs to be done to support the person. 

Therapy for Aphasia

As a dementia therapist, it’s easy to see how aphasia can affect a person’s mental health. Imagine what it might be like to know what you want to say, but you can’t get it out. OR imagine hearing someone else speak, seeing their lips move and not being able to comprehend what it is they’re saying. That’s what it might be like for someone with aphasia. 

This experience is both shared and individualized for the person with dementia and their caregiver. Two separate experiences are and will occur at the same time. Two experiences where one person struggles to speak and the other struggles to understand. 

When we struggle, it’s often suggested that we go to therapy. What happens when you can’t speak? How do you participate in therapy? How do you know someone can understand your experience and what’s keeping you from connecting? What happens if you can no longer ask for help?

Art Therapy for Aphasia Symptoms

In my art therapy practice I witness and try to hold space during the struggle and frustration aphasia in dementia may have on a client.  Some people appear to have insight in their loss of language, while others don’t appear to regard it in their attempts to verbally communicate. I have found that when people have insight, they appear to be more frustrated. 

Some people physically look fit and can move their body like anyone else, but when it comes to speaking they stall. That is until I provide a paint brush, canvas and some acrylic paint. 

Aphasia and Art Therapy Case

I’d like to introduce you to P. Due to HIPAA and the desire to keep clients confidential, P is a culmination of clients and different experiences I’ve had with aphasia in an art therapy session.  

I enter P’s home and he is sitting in a chair, withdrawn, head down, fidgeting with her fingers. She hears my voice, looks around and we make eye contact. She immediately smiles, claps her hands, stands up and reaches out for a hug. “You, You”

P has trouble sitting back down. Our words aren’t connecting. He becomes visually frustrated, as we all verbally instruct him to sit down. Those words no longer make sense to him. Aphasia has taken over. 

We try to put his hand on the arm of the chair and the second he touches it, he proceeds to sit down, on his own. Then pulls the chair in with him. 

P looks at me and says “What will wee… “ I give him a moment (5-7 seconds) and then attempt to complete his sentence “what will we do today?” He nods yes and smiles. 

I bring out a selection of acrylic paint, canvas and brushes. I ask, What color would you like today?” He goes blank, facing the paint. I take a closer look at his eyes, they’re moving back and forth. Appearing to scan the colors in front of him. 15-20 seconds go by and he grabs blue and says “this one”. I take the color and say, “Grab another color.” He immediately grabs pink and smiles. 

I hand P the open paint bottle and without instructions he pours it out into the containers we usually paint from. I put a brush with the handle facing him into the paint. He picks it up and starts to paint on the canvas. 

P spends the next 30 minutes painting. Sometimes appearing confused about what to do next. In these moments, I give more space. My initial impulse is to ask a questions, but it doesn’t often help. 

Giving space is what he needs in this moment. I am validated when he continues painting without my jumping in to provide a solution. He didn’t need that. He just needed space to know he could solve it on his own. 

His focus is incredible. 

He continues to paint, placing all his energy on moving the brush along the canvas. At one point P stops, looking like he is done with the painting. He puts his brush down and turns to me. He says, “So where are you from?” Then turns back to his painting.

P picks his brush up and puts a few more strokes on the canvas. He puts the brush down and turns to me and smiles. Happiness fills the air. That solemn space I walked into is now feeling more alive and bright. 

Conclusion

Change can happen when you bring the possibility of the arts to someone experiencing aphasia. As you can see with P, he came alive when a brush was put in his hand. Even if you don’t think someone can, I suggest giving them the opportunity to prove you wrong. 

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REMEMBER…

You are not alone in this process.

Source https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8985654/