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Communicating and Connecting Beyond the Disease: Part I

Communicating and Connecting Beyond the Disease: Part I

By Caitlyn Mark, Memory Care Director at Wingate Residences at Needham

Hello, world! And just like that, the holiday season is here, and many of us are looking forward to gathering with family and friends in the coming weeks. For all the joy the holiday season brings, it can also be a trying time for people living with dementia, as well as their loved ones and caregivers. Communicating and connecting with a loved one can be difficult, or sometimes feel impossible, when they are suffering from dementia. In the first part of this two-part blog, I hope to give you some insight and advice on how to connect and communicate, so that everyone can enjoy family gatherings this holiday season. Allow me to begin with a beautiful poem called “Words” by Marilyn Truscott.


I told you it was cold
When I meant to say hot
I do that a lot
With full hard thought
Too often, too strange
Not in a hurry
Nor head in a flurry
Should I worry
Or should I stress
Or just let you guess
What do I mean
I know what to say
But search for the words
You Know, like trying to name
A person you met once
Is it Joe, or Jim, Art or Tom
I know what I want to say
But the words come out wrong
Like in that old song
The words just come out wrong
And sometimes
The words aren’t there at all

This poem provides some insight into the world in which our loved ones with dementia live. As the disease progresses, a person living with dementia may have difficulty expressing wants, needs or sharing their day-to-day experiences. Interpreting what your loved one has said to you or what you have said to your loved one can be mutually frustrating. When communicating and connecting with someone who has dementia, it’s important to understand that you must change your method of communication to match theirs — study their body language, match your tone of voice to theirs and try having them show you with physical gestures what they are talking about.

Dementia affects the part of the brain that allows a person to communicate and comprehend messages. The temporal lobes are responsible for language, and the hippocampus is responsible for short and long-term memory. As you may know, short-term memory is critical when communicating and allows a person to think as well as respond to what has been said.

There are five major functions of the brain, so let’s take a step back and look at how the disease affects these functions:

  1. Agnosia is the inability to recognize objects or their uses. For example, your loved one may try to use a butter knife as a straw or may want to drink laundry detergent because they think it’s juice.
  2. Amnesia makes it difficult to learn or retain new information. A person with amnesia may ask the same question over and over again. For example, I cared for a woman who was always asking where her husband was. I would respond, and she would immediately ask again within seconds where her husband was.
  3. Aphasia is a decreased ability to express or interpret language, meaning the inability to understand what the words mean. You may often hear people describe this symptom as having “word salad.”
  4. Apraxia has an effect on a person’s activities of daily living, meaning they are unable to care for their personal needs. They may not remember how to dress, brush their teeth, toilet themselves or shave.
  5. Lastly, a person with dementia may lose major motor skills, such as the use of their arms or legs. They may lose the ability to walk, stand or even feed themselves.

Understanding the nature of dementia is the first step in understanding the world in which our loved ones impacted by the disease live. But how do you connect with your loved one when so much is happening in their mind? Stay tuned for Part II, where I’ll teach you a few strategies on how to better communicate and connect with your loved one.

Living in their reality,