It’s Not Easy

By Peter Galvin, MD

In all my years as a primary care physician, one of the most difficult issues I encountered was helping families deal with a family member with dementia. Dementia rarely, if ever, gets better over time. Inevitably, a family reaches a decision point – care for their loved one at home or have him/her placed in care facility. Most families want to keep Mom or Dad at home, where she/he is more comfortable. In most cases, they soon discover how difficult it is to care for a person with dementia. As I mentioned above, dementia usually worsens over time, plus the family will often need to resort to hiring someone to help care for the patient. That care includes preventing wandering, making sure the stove was not turned on, toileting, fall prevention, and feeding.

Patients with advanced dementia commonly have problems with chewing and swallowing, which may lead to aspiration of food (which can lead to pneumonia), weight loss, and malnutrition. Often these patients need assistance with eating. A speech-language pathologist can observe swallowing function and recommend strategies to feed patients in the safest manner possible. Hand feeding (also called assisted oral feeding) involves caregivers providing food and drink to patients using strategies that decrease aspiration, including low-flow cups that limit large volumes of liquid, feeding patients only when they are alert, and ensuring upright positioning. Hand feeding small amounts of food and fluids can help avoid feelings of hunger and thirst. Although hand feeding is slow, it may enhance quality of life through social interaction and allow those with advanced dementia the continued pleasure of tasting food.

The alternative to assisted oral feeding is to place a feeding tube. These plastic tubes can be inserted through the nose (nasogastric tube [NG tube]) into the stomach to provide nutrition, fluids, and medications for those unable to swallow. But NG tubes are only temporary because they can erode into adjacent tissues. Long-term feeding tubes are surgically inserted through the abdominal wall into the stomach or small intestine. But, per a recently published large study, feeding tubes do not improve nutrition, quality of life, or survival, nor do they improve the healing of pressure ulcers (formerly called bed sores) in those with advanced dementia. Plus feeding tubes are associated with increased rates of admission to an intensive care unit, longer hospital stays, higher rehospitalization rates, and higher mortality rates compared to those with advanced dementia and no feeding tubes.

Some patients may have pain, infection, and bleeding at the feeding tube insertion site. The feeding tube may fall out or migrate outside of the stomach or small intestine. Some dementia patients attempt to pull the tube out, resulting in the need for restraints which may result in decreased mobility, deconditioning, and pressure ulcers. Therefore, careful hand feeding is usually recommended in most cases, and feeding tubes are usually a last resort. As dementia worsens, weight loss and lower calorie intake are expected. Advanced care planning and feeding options should be discussed before patients cannot make their own decisions (usually via a living will). Patients and families should be educated about the benefits of hand feeding and the risks/benefits of feeding tubes.

For more information go to the website of the National Institute on Aging at www.nia.nih.gov

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