Our reader Denise wrote:
“I’m so distraught over my father. Has a Peg tube and hasn’t had any solid food for over 2 months.
He asks me all the time for food. Seeing him suffer is too much. If I give him food and then he’ll aspirate and he is DNR.
I feel like by giving him food i will be contributing to his death sooner. Oh Lord …so painful.”
My response: I would recommend an evaluation by a speech therapist with dementia experience.
While risk can never be removed, it can be reduced; the speech therapist may be able to recommend specific foods and textures that would satisfy the desire to eat while minimizing choking risk.
I’m sure many of your readers are asking themselves, “If feeding tubes do not necessarily help the situation, why do doctors/nurses/facilities recommend them?
Again, short answer: liability and lawsuits.
The person living with end-stage dementia is, unfortunately, terminal.
But if a person with end-stage dementia who has difficulty swallowing develops pneumonia and dies (even if the pneumonia was not related to the swallowing problems, as you will read later), I’m in trouble.
Why do people with dementia have problems swallowing?
Parts of the brain responsible for coordinating the activity of eating–using utensils, chewing, swallowing–are affected by the dementia disease.
Just like a baby “graduates” to more complex textures and foods (milk, then cereal, the mushy foods, then bite-sized items like cheerios), people with dementia move backward along the food continuum.
They move from foods requiring dexterity to finger foods to softer textured items.
Choking often occurs because the person with dementia attempts to eat foods beyond their abilities.
For example, I have a memory from 1984 of a patient with dementia choking on a peach half that is seared in my memory. I was a nursing assistant and I was assigned to Pauline, a resident who required supervision with feeding. I placed her tray out of reach (or so I thought) until I could finish distributing the trays to the other residents.
As I returned to the dining area, I saw Pauline reach out and grasp a canned peach half. She placed the entire half peach into her mouth and attempted to swallow it. The peach lodged firmly into the back of her throat.
I knew enough to perform the Heimlich maneuver and the peach half literally flew out of her mouth. From that moment on, I never placed a tray in front of a resident who needed to be fed unless I was ready to help them.
So, choking can occur when people with dementia are unsupervised and attempt to eat foods that are too “difficult.”
Choking may also occur when the person with dementia has difficulty coordinating all of the chewing and swallowing activities.
Thickened liquids are also recommended, but many people with swallowing problems dislike the the thickened liquids and may refuse to accept them.
Long Term Care facilities can be penalized (with heavy fines) if residents lose excessive weight.
A person with dementia who needs to be slowly fed may not receive that level of care and lose weight, prompting the facility to recommend feeding tube placement. That is a topic unto itself.
But families, who are trying to do what is best for their loved ones, then find themselves facing the same predicament as the reader: do they allow the person with dementia to eat and risk choking, or ignore the requests but feel guilty?
Aspiration, or the accidental inhalation of food particles, does not cause true pneumonia. It causes a lung infection known as aspiration pneumonitis.
A person who has a feeding tube can still develop pneumonia, especially if mouth care is not being provided regularly. So withholding food will not prevent a lung infection.
Originally published on June 4, 2017 by the Alzheimer’s Reading Room.
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.