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An emotional crossroad for caregivers of people with dementia: When loved ones struggle to eat

Caregivers want to keep loved ones comfortable and nourished but misconceptions about feeding tubes could cause more angst than comfort

dementiaAs a geriatrician, I have helped counsel families who are in one of the most difficult stages of caregiving: when their loved one’s advanced dementia has progressed so far that eating without help is no longer possible.

Naturally, people want their family members to be comfortable and from the beginning of life, we have learned that being fed – whether through a shared homemade meal or hot bowl of soup when you’re ill – is among the greatest expressions of love.

This is why one of the most heart-wrenching decisions for caregivers often revolves around nutrition and whether a feeding tube should be placed   when eating naturally becomes difficult. So much of life –culturally, socially and even religiously – centers around food. When we think of nurturing someone, we think of nourishing them.

It would be logical to assume that the nutrients provided by artificial feeding would increase comfort, energy levels and even length of life. However, for older people with advanced dementia, this type of feeding often has the opposite desired effect. Research shows that feeding tubes can cause great burdens for the patient, including agitation, uncomfortable side effects and other complications that can require new medical needs.

Technology has made it easier to use feeding tubes and we know that about one-third of U.S. nursing homes residents with advanced dementia have them. Families making this decision often feel they carry a lot  on their shoulders because their loved ones with advanced dementia can’t speak for themselves and can’t tell you if they’re hungry or full.

This year, I worked with a team of colleagues to update the American Geriatrics Society’s national guidelines published on July 17  to help guide caregivers and their families through these difficult decisions. We determined that for older adults with advanced dementia, risks and harms to overall quality of life usually far outweigh any potential benefits of feeding tubes in those with advanced dementia.

We encourage a palliative approach focused on comfort and dignity and that allows patients to enjoy the taste of food through the end of life. Caregivers faced with this decision may consider the following.

Misconceptions:

1. People can no longer experience the joy of food at this stage: As we explain in our new guidelines, oral feeding may be one of the remaining pleasures and opportunities for socialization for someone with advanced dementia. Hand-feeding allows the patient to continue to enjoy the taste of food. You may not be able to offer them their favorite lasagna dish but they may be able to have a couple of bites of their favorite chocolate pudding or ice cream. The interaction between caregiver and patient during hand-feeding can also help replace some of the loss of social fulfillment from eating.

2. Tube feeding is a cheaper and more effective way to feed patients: In fact, tube feeding is associated with greater health complications and compromises to quality of life. Consequences often include agitation, greater use of physical and chemical restraints, complications that can require new medical needs and pressure ulcers. Some patients also can’t tolerate the feeding and experience side effects like bloating and diarrhea. Hand-feeding has also been shown to be as good as tube feeding when it comes to outcomes of death, aspiration pneumonia, functional status and comfort.

3. Saying no to a feeding tube is the same as starving someone: Taking in fewer calories is a normal part of the progression of dementia and natural process near the end of life. It’s understandable to want to default to the medical “fix” because it’s available but in reality, the risks of these interventions often outweigh the benefits. Patients can live a long time on reduced calories. We think of advanced dementia as a terminal illness and a palliative approach that allows the disease to take a natural course while managing symptoms to keep the patient comfortable is a compassionate, patient-centered option.

4. The patient will suffer without regular calorie intake: We counsel families that patients are still able to taste and we can help with thirst and dry mouth by providing small amounts of foods and liquids through the day. A palliative approach of offering mouth swabs and good oral care for these issues also provides comfort and focuses less on calories and more on managing symptoms to keep patients comfortable.

Eating problems occur in almost 90 percent of patients with advanced dementia and it can be devastating to watch a loved experience loss of appetite, weight loss or difficulty swallowing. Ultimately, the conversation about natural versus artificial feeding needs to occur between care providers and families who should be aware and educated about all the options to care for their loved ones.

Take the next step:

•    Learn more about palliative care at the U-M Health System and the U-M Geriatrics Center and Institute of Gerontology
•    Learn more about the new guidelines published on July 17, 2014


VitaleCaroline Vitale, M.D. is a geriatrician and palliative care specialist with the University of Michigan Geriatrics Center and VA Ann Arbor Healthcare System. Her clinical interests include dementia, end-of-life care and geriatric primary care.

 

 

GeriatricsBoilerThe University of Michigan Geriatrics Center and Institute of Gerontology is a premier, national resource dedicated to advancing research on aging and geriatrics health care issues; to providing outstanding educational opportunities in geriatrics for health professions trainees and to delivering exemplary, interdisciplinary health care and services for the older population.

 

 

 

 

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