Mar 6, 2014

Interpreting The Words Of Someone With Alzheimer’s

So the next time you engage in a conversation with someone with dementia, broaden your interpretation of what’s said.

Alzheimers Reading Room
By Elaine C. Pereira
Alzheimer's Reading Room

Don’t Take Them Quite So Literally.

Our ability to use language, specifically the spoken, read and heard word, is what defines us as humans.

Language, real meaningful reciprocal dialogue, is intricately complex. It involves precise synchronicity in the brain of hearing what is said, processing the meaning of the spoken word and executing a response, all in microseconds.

Conditions and diseases that affect the brain impede the delicate flow of language.

Consider the changes in Dick Clark’s articulation post stroke, Gabrielle Giffords after her gun shot injury to her head, or how Multiple Sclerosis impacted Annette Funicello’s speech abilities.

And then there’s Alzheimer’s, an insidious, neurological disease that pretzel twists the gray matter as it gobbles up brain cells. Deteriorating communication skills is just one of many abilities adversely affected by Alzheimer’s Disease. 

Even as many with Alzheimer’s still talk, what they say and how they say it also “speaks volumes” and we need to “listen” with a different set of ears!

I’d like to share the following true story with you. Clearly the message needs to be interpreted less literally and more figuratively.
David’s widowed mother Mariam was experiencing significant decline from Alzheimer’s. Neither he nor his sister Carolyn lived anywhere close geographically to their mom, so they decided to move Mariam into an assisted living center near David’s family in Newport. In that way, his wife, the grandkids and he could then visit Mariam more regularly.

David clearly witnessed his mother’s steady decline. She needed increasing help with all self-care, was wobbly and often confused.
David accepted that his mother probably knew he was important or familiar to her, but Mariam had ceased referring to him by name for some time.

Then one weekend Carolyn came into town to see her mom and family. As soon as Carolyn walked into her mother’s room, Mariam perked right up, calling Carolyn by name much to David’s surprise.
Naturally he was expecting his mom to acknowledge him by name too, assuming his mother was having one of her rare but wonderfully lucid moments.

Mariam looked at her son and said, “Who are you?”

Masking crushing disappointment he replied, “David.”

“I know a David. He lives in Newport. He use to run track for the Newport high school Huskies, but he’s grown now. He’s about your age, manages his own company, married and has two kids, a son Jonathan. That was my husband’s name, although we called him John; he’s dead now. And a daughter Katherine; Katie they call her. They visit me and bring cookies, my favorite, Snicker Doodles. 
Do you know David?” 
Mariam’s David was stunned! 
She had just described him in perfect detail, except of course for referring to her son as “another David.” 
He managed to muster the reply “No, I don’t” before leaving her room to regroup emotionally.
I Will Never Forget

This story was shared with me by a woman – Patricia - at one of my recent presentations and book discussion/signing of my memoir I Will Never Forget-A Daughter's Story of Her Mother's Arduous and Humorous Journey Through Dementia. 

Pat knows Carolyn personally who had shared the incident with her. Carolyn had very mixed emotions about and was bewildered by her mother’s remarks.

I smiled to what I perceived as a delightful story that the family was probably misinterpreting too literally. Patricia looked perplexed initially until I explained.

Although I can’t guarantee it, I am confident that Mariam was referring to her son when she described “David” with such warmth and accuracy. She may have “articulated” the relationship connection incorrectly, but she was talking about her son and grandchildren.

For someone with Alzheimer’s, words really do get “lost in translation”. What they say and what they mean are not always in synch, but I, like many others, strongly believe the message is the same.

So the next time you engage in a conversation with someone with dementia, broaden your interpretation of what’s said. 

Think outside the parameters of the literal spoken words and be willing to hear the intent behind them.

“They” are still in there and it’s up to us to find the best way to interact with them.

Your comments, insights, and experiences are welcome below in the comments section.

+Elaine Pereira , MA OTR/L CDP CDC, is a retired school occupational therapist who worked with special needs children. She earned her bachelor’s degree in occupational therapy from Wayne State University and later completed her master’s degree. Pereira and her husband live in Michigan. Elaine is the author of -  A Daughter's Story of Her Mother's Arduous and Humorous Journey Through Dementia.

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Original content Bob DeMarco, the Alzheimer's Reading Room