Coping with an ill loved one’s difficulty swallowing can be frustrating and frightening for everyone involved. Providing care for someone we love means nurturing and nourishing them, but when the ability to offer pleasure through food is taken away, caregivers may end up feeling unsuccessful and powerless.
Of course that’s illogical, but when our best efforts result in an elder coughing or gagging, it’s hard to feel good about the care we provide. What we need to understand is that this is not our fault. Many diseases can cause swallowing issues. As caregivers, all we can do is learn as much as we can about our loved ones’ conditions and cope the best ways we know how.
Hospice personnel often work with patients who have dysphagia. Antoinette Ryba, RN, patient advocate, care manager, member of the Hospice and Palliative Nurses Association and health coach, offers caregivers some suggestions for recognizing symptoms of dysphagia and helping a senior eat safely.
Signs and Symptoms of Dysphagia
Ryba explains that difficulty swallowing, clinically known as dysphagia, can occur for a variety of reasons, including oral neoplasms (growths that may or may not be cancerous), neuromuscular disorders like multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS), Parkinson’s disease (PD), strokes and various forms of dementia. “There are recognizable, yet often subtle, signs and symptoms that indicate dysphagia,” Ryba says.
Signs of dysphagia include:
- Additional time and effort spent at meal times
- Food, liquids or saliva leaking out of the mouth at any time
- ‘Cheeking’ foods instead of swallowing them
- Gurgling sounds or voice during and after meals
- Frequent coughing or choking while eating
- Weight loss
- Chest congestion
- Aspiration pneumonia
“When these signs occur, it is important for caregivers to investigate further and find the underlying cause,” Ryba urges. “Treatment and management will depend on an official assessment, which is commonly performed by a speech-language pathologist (SLP).”
The Connection Between Dementia and Dysphagia
In Alzheimer’s and dementia patients, some degree of difficulty swallowing will occur during the disease trajectory, and it is a common indicator of disease progression. “In this case, the cause is a loss of gag reflex or decrease in level of consciousness, which requires increased care and supervision,” explains Ryba.
A family member may misconstrue the subtle signs of dysphagia and assume that their loved one is acting out or does not enjoy the food they are being served. In many instances, persistence and encouragement are crucial parts of helping another person maintain or improve their health. However, if dysphagia goes unnoticed and isn’t handled properly, it could jeopardize the care recipient’s wellbeing. Furthermore, many dementia patients have difficulty articulating problems and concerns and may even become nonverbal as the condition progresses. For this reason, dementia caregivers should watch carefully for any signs of dysphagia. “Aspiration pneumonia is one of the most common causes of death in Alzheimer’s patients,” Ryba laments.
How to Cope with Difficulty Swallowing
It’s easy for caregivers to grow impatient as we sit and wait for each bite or sip to be swallowed. Handfeeding is one of the best approaches for those with more advanced dysphagia, but it can be especially trying. Ryba offers the following suggestions for facilitating mealtimes and promoting safe eating habits:
- Thicken liquids with a commercial thickener like Thick-It or pureed fruit, such as apricots and prunes. Thickened liquids won’t trickle down the throat as readily as thin juices and are less likely to cause coughing, choking and aspiration. Note that certain thicknesses are recommended depending on one’s ability to chew and swallow. Part of undergoing a professional assessment is determining what food texture is safest for your loved one.
- Puree or finely chop foods, stick to a soft/mashed diet, and serve foods with thicker gravies or sauces to assist with swallowing.
- Make ample time for meals to allow adequate chewing and complete swallowing.
- Remove distractions at meal times to allow for full concentration on eating.
- Use eye contact and encouragement with visual cues, such as opening/closing your mouth when they are supposed to sip or bite.
- Be cognizant and alert to cues that indicate distraction, choking or food retained in the mouth.
- Ensure your loved one is sitting as upright as possible while eating, not slumped forward or reclining.
- Schedule mealtimes for times of the day when your loved one is most alert and cooperative.
- Try serving smaller, less intimidating portions. Some Alzheimer’s patients do better with finger foods that will tap into the automatic motor rhythm they have used all their lives when eating.
Regardless of whether a loved one is still feeding themselves or you are helping them, mealtimes require lots of patience. Give them as much autonomy as possible and all the time they need to finish their meal. Let your loved one make choices and honor those choices—don’t be forceful. Let care and love show on your face rather than fleeting irritation at their slowness.
Sometimes Dysphagia Can Be a Losing Battle
In some instances, like temporary difficulties that result from a stroke or prolonged intubation, working with a dysphagia specialist can maintain or restore a person’s ability to eat and drink safely. Everyone is different, which is why a professional assessment is crucial for devising customized care and nutrition plans.
In other cases where dysphagia is related to a progressive neurodegenerative disease like Parkinson’s or Alzheimer’s, exercises, thickening agents and eating techniques recommended by speech-language pathologists may not be effective over the long term. “Once dysphagia becomes so severe that swallowing is no longer possible, the disease may have progressed to the point of considering an evaluation for hospice care,” Ryba advises. “For example, weight loss and the inability to feed oneself and swallow are fundamental hospice criteria. An evaluation by a hospice professional would be appropriate to determine if end-of-life care is appropriate.”
Feeding tubes are often presented as an option for preventing dehydration and malnutrition in seniors with severe dysphagia, but this treatment option is an invasive one with limited success. For this reason, many seniors specify their preferences for life-prolonging treatments like tube feeding using written advance directives.