I'm so distraught over my father. He has a Peg tube in, and hasn't had any solid food for over 2 months.
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."
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By Dr. Rita A. Jablonski
Alzheimer's Reading Room
To the reader, 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.
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Nobody would accuse me of malpractice or neglect if I allowed a terminal cancer patient with diabetes to eat whatever he or she desired.
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.
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Speech therapists are a wonderful source for evaluating an individual and recommending strategies to avoid choking: having the person only eat when sitting up straight, using a chin tuck, and providing softer textured foods (ground meat, mashed vegetables) to aid chewing and swallowing.
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.
At the same time, providing small amounts of food that can be easily managed will not necessarily create a problem, especially if the person is sitting up, alert, and is being carefully supervised.
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You are reading original content the Alzheimer's Reading Room
Peg Tube. Percutaneous endoscopic gastrostomy (PEG) is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient's stomach through the abdominal wall, most commonly to provide a means of feeding when oral intake is not adequate (often because of dysphagia or sedation).
Dysphagia. Difficulty swallowing (dysphagia) means it takes more time and effort to move food or liquid from your mouth to your stomach. Dysphagia may also be associated with pain. In some cases, swallowing may be impossible.
Occasional difficulty swallowing, which may occur when you eat too fast or don't chew your food well enough, usually isn't cause for concern. But persistent dysphagia may indicate a serious medical condition requiring treatment.
Dysphagia is a prevalent difficulty among aging adults. Though increasing age facilitates subtle physiologic changes in swallow function, age-related diseases are significant factors in the presence and severity of dysphagia. Among elderly diseases and health complications, stroke and dementia reflect high rates of dysphagia. In both conditions, dysphagia is associated with nutritional deficits and increased risk of pneumonia.
Long Term Care. When a person requires someone else's to help with his or her physical or emotional needs over an extended period of time, this is long-term care. This help may be required for many of the activities or needs that healthy, active people take for granted.
Hospice Care. A hospice team consists of a doctor, a nurse, a social worker, a therapist when needed, a counselor and an aide to provide custodial care. Help with activities of daily living is provided at home or in a Medicare approved hospice facility.
Aspiration pneumonia is a lung infection that develops after you aspirate (inhale) food, liquid, or vomit into your lungs. If you are not able to cough up the aspirated material, bacteria can grow in your lungs and cause an infection.
Source Alzheimer's Reading Room