Uncovering a Hidden Diagnosis A woman with dementia suddenly stops eating, and her SLP daughter questions the diagnosis of dementia-related dysphagia. First Person/Last Page
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First Person/Last Page  |   May 01, 2017
Uncovering a Hidden Diagnosis
Author Notes
  • Linda Carozza, PhD, CCC-SLP, is associate professor and director of the communication sciences and disorders program at Pace University. She is an affiliate of ASHA Special Interest Group 2, Neurophysiology and Neurogenic Speech and Language Disorders. drlcarozza@aol.com
    Linda Carozza, PhD, CCC-SLP, is associate professor and director of the communication sciences and disorders program at Pace University. She is an affiliate of ASHA Special Interest Group 2, Neurophysiology and Neurogenic Speech and Language Disorders. drlcarozza@aol.com×
Article Information
Swallowing, Dysphagia & Feeding Disorders / Special Populations / Older Adults & Aging / First Person/Last Page
First Person/Last Page   |   May 01, 2017
Uncovering a Hidden Diagnosis
The ASHA Leader, May 2017, Vol. 22, 80. doi:10.1044/leader.FPLP.22052017.80
The ASHA Leader, May 2017, Vol. 22, 80. doi:10.1044/leader.FPLP.22052017.80
When my mother died in February 2008, she had outlived doctors’ predictions by three years.
I was the only child of a devoted mom who dedicated her life to my education. As a speech-language pathology graduate student, I asked her to be my test subject for the administration of the Mini Mental State Examination. To my surprise, she was in early-stage dementia. By the time I received my PhD (specializing in neurogenic disease, specifically Alzheimer’s disease progression), she began to show early memory loss and continued to decline, requiring nursing home placement in 2001.
She was characteristically bright and sunny, and I was happy to see that music was her companion as her condition declined. Mom danced in her wheelchair, wore headphones and communicated with her eyes. She progressed through stages of automatic speech, preserved social speech and eventual muteness. She ate a soft pureed diet in a social dining room.
At one visit, I saw that her status had suddenly and drastically changed. I found her in bed with only IV hydration and no interactive behaviors. Staff explained that the inevitable decline of dementia causes people to refuse to eat, hold food in their mouths and fail to recognize edibles. Mom would be placed in hospice and would suffer no pain as her body functions would slow down until her demise. It would be perhaps two weeks, and, they told me, I had to understand and accept this.
At the time, I was working and learning in a major hospital and had seen tremendous recoveries from injuries. Certainly, that was different from my mother’s experience, but the sudden change in her status concerned me—even with dementia-related dysphagia confirmed by bedside and instrumental examination. When I asked about enteral feeding, I was told that it was futile and ill-advised.
Despite the warnings—and taking full responsibility—I asked the hospital to start tube feeding. As she adjusted to this new nourishment, I asked if I could provide oral stimulation, starting with non-nutritive techniques and progressing informally through the stages of dysphagia management treatment. I wanted to take the only chance I had to return my mother to her previous level of function. I consulted with a neurologist, an SLP colleague and the facility’s medical director.
My mother developed an eagerness for the approach of a spoon or a bit of her favorite frozen custard. She responded as I verbally and physically prompted her to swallow. She continued on this informal regimen of feeding tubes and my encouragement of oral intake for three months. One day, to my astonishment, the staff told me she had gained too much weight. I chose to have the tubes removed, and she returned to a soft pureed diet in the dining room for three more years.
The physicians told me I saved Mom’s life—that she may have had a pseudobulbar palsy or other brain stem complications that explained her dysphagia. It’s likely that her dementia had obscured a possible stroke-related disorder. My choice to begin tube feeding was ultimately an appropriate intervention.
People with dementia may have secondary diagnoses that may not be easily analyzed and may not make a meaningful difference in the context of a catastrophic illness such as dementia. But for my mother, this was not the case, and intervention was critical. It made all the difference in the world to have her by my side for three more quality years.
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FROM THIS ISSUE
May 2017
Volume 22, Issue 5