Feeding Tubes in Late-Stage Dementia Q&A

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Feeding Tube Placement/ Thierry Dosogne Collection: Stone /Getty Images.

As your loved one with Alzheimer's disease or another kind of dementia progresses into the later stages, there are often multiple treatment decisions that must be made. One that family members may face is the use of a feeding tube.

What Is a Feeding Tube?

A percutaneous endoscopic gastrostomy (PEG) tube is a type of feeding tube commonly used for people with dementia and many others as well. The decision to place a PEG tube in someone results in surgery where a tube is connected to the stomach and comes out of the abdomen.

After placement, a liquid nutrition formula is then pumped into the tube and stomach.

When Might Decisions Have to Be Made About Tube Feeding?

Frank, who is 89 and had advanced Alzheimer's disease, lives at a nursing home because his wife just can't provide the 24 hour, 7 day a week care that he requires.

She visits frequently and is very caring and supportive of Frank. Recently, he began coughing and developed a fever (symptoms that could indicate aspiration pneumonia), so the facility asked Frank's wife Vivian if she wanted to have him sent to the hospital. She said "Yes" so he was brought to the hospital.

The hospital found that he did indeed have aspiration pneumonia and started him on a course of antibiotics to treat the pneumonia. They also conducted a swallow study which showed that due to Frank's late stage Alzheimer's, his ability to swallow was impaired.

They concluded that he would continue to be at risk for further aspiration pneumonia episodes, as well as choking. The dietitian also conducted an evaluation and concluded that Frank was not taking in enough food by mouth and was losing weight gradually.

    Here's Where the Decision Arises:

    Because of the results of his swallowing evaluation, the physician asked Vivian if she wanted to have a tube put in Frank's stomach to provide him with nutrition.

    Reasons to Proceed with Feeding Tube Placement

    Vivian debated about the doctor's question and decided to have the PEG tube placed. She did so because she doesn't want Frank to develop another aspiration pneumonia. Since the swallow study indicated that he was a risk for choking and pneumonia, the hospital recommended limited food and fluids by mouth. She is concerned that he would starve to death without a feeding tube and feels that by placing a feeding tube in Frank, he'll at least not feel hungry and also won't be at risk for choking and pneumonia.

    Research On Tube Feedings for Someone with Dementia

    Do Tube Feedings Prevent Aspiration Pneumonia?

    While it's possible that a tube feeding may reduce the chance of food or liquid going into the lungs and developing a pneumonia, this can still occur due to saliva going down the wrong way.

    Dementia eventually affects the ability to eat and swallow. It is not uncommon to see someone with a tube feeding still develop an aspiration pneumonia.

    Do Tube Feedings Heal or Prevent Pressure Ulcers?

    As a person with dementia further declines, her body is at risk for developing a decubitus ulcer (sometimes called a bed sore) from being in one position too long or putting too much pressure in one area. Good nutrition can assist in healing and preventing these open areas. However, the use of a feeding tube can increase the risk for a pressure sore because one of the risks of tube feeding is diarrhea. Diarrhea can significantly increase the chances of skin breakdown because of its acidic nature. It can also cause stomach discomfort and gas. Research indicates that tube feedings do not prevent pressure ulcers.

    Do Tube Feedings Extend Life?

    Some people choose tube feedings for a loved one because they're not ready to let that person go yet, or they feel like they'd be giving up on their loved one. Research, however, does not demonstrate increased life expectancy for people who have dementia and a feeding tube compared with those without a tube.

    Some research suggests that swallowing difficulties and weight loss are the beginning of the dying process and thus a feeding tube, though it provides nutrition, cannot reverse that end-of-life process. Studies have found that in people with advanced dementia, those with a feeding tube have the same survival rate as those without a feeding tube.

    Do Tube Feedings Provide Adequate Nutrition and Hydration?

    Tube feeding formulas can be adjusted to provide greater or fewer calories and nutrients as is appropriate. Studies have shown, however, that weight loss continues and laboratory results that measure nutrition and hydration are often not improved despite feeding tube placement.

    Do Tube Feedings Improve Quality of Life?

    Eating is often a social event, especially in a facility environment. With a tube feeding, those residents are often not in the dining room while others are eating, causing an increased chance of social isolation. People with tube feedings may also crave food or liquids by mouth for the taste and feel of the experience.

    Some physicians will issue an order for "pleasure feeding" which allows for minimal amounts of oral feeding and drinking. This is typically because they have considered the person's quality of life, and although the swallow function may be limited, the person and the family feel it's worth the risk to enjoy some food and drink.

    Other Options Instead of Tube Feeding

    • Hand Feeding

      Hand feeding is just as it sounds- feeding a person one bite at a time of tasty, easy to eat food. Hand feeding is strongly supported by research for people with advanced dementia.

    • Head of Bed Up after Meals

      If the person is mostly bed-bound, keeping his head elevated for around a half an hour after eating may help prevent aspiration pneumonia.

    • Offer a Soft or Pureed Diet

      A soft diet where the meat is ground up can be easier to eat for the person with limited eating abilities. Pureed diets may be helpful when a person's ability to chew food has declined.

    • Use of a Sippy Cup or Straw for Liquids

      Cups with lids or straws can assist people with swallowing difficulties and may decrease the risk of choking.

    Risks Associated with Feeding Tube Placement

    • Hospitalization for Tube Placement
    • Pulling Out the Tube Due to Restlessness
    • Infection in the Tube Placement
    • Restraints Due to Risk of Pulling Out the Tube
    • Strong Desire for Oral Food and Fluids

    DISCLAIMER

    **Please note that the information included on this website and linked to both on and from this site is not medical advice and is for guidance and information only. I've made every effort to report information that is medically accurate and scientifically researched, but this is not a substitute for care and guidance from a physician.**

    Sources:

    American Family Physician. 2002 Apr 15;65(8):1605-1611. Feeding Tubes in Patients with Severe Dementia.

    Annals of Long-Term Care. May 2009. http://familymed.uthscsa.edu/geriatrics/reading%20resources/virtual_library/Syndromes/Dementia/AD%20&%20Eating%20Problems09.pdf

    The Journal of the American Medical Association. 1999 Oct 13;282(14):1365-70. Tube feeding in patients with advanced dementia: a review of the evidence. http://www.ncbi.nlm.nih.gov/pubmed/10527184

    Archives of Internal Medicine. 2001;161:594-599. High Short-term Mortality in Hospitalized Patients With Advanced Dementia: Lack of Benefit of Tube Feeding. http://www.acoi.org/2010Convention/BrymanHighShortTermMortalityInHospitalizedPatientsWithAdvancedDementia.pdf

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