Coping with an ill loved one’s difficulty swallowing can be frustrating and frightening for everyone involved. Caring 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 defeated.
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 as well as we can.
Hospice personnel often work with patients who have dysphagia. Antoinette Ryba, RN, a patient advocate, care manager, and health coach with nearly a decade of hospice experience offers caregivers suggestions for recognizing symptoms of dysphagia and helping a senior eat safely.
What Is Dysphagia?
Difficulty swallowing is clinically known as dysphagia and occurs when one’s esophagus does not function properly. When a person with dysphagia eats or drinks, they cannot swallow correctly. This swallowing disorder causes discomfort, coughing, choking and even aspiration of food particles and saliva into the lungs, which can lead to a serious, potentially life-threatening infection.
What Causes Dysphagia?
Ryba explains that difficulty swallowing can occur for a variety of reasons, including multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS), Parkinson’s disease (PD), stroke, and various forms of dementia. These conditions can affect the muscles and/or nerves involved in the process of swallowing. Other conditions can contribute to swallowing difficulties, such as gastroesophageal reflux disease (GERD) and growths in and around the esophagus.
Signs and Symptoms of Swallowing Difficulties
Knowing what to look for is imperative since dysphagia is common in seniors with Alzheimer’s disease and other types of dementia. Patients may not be capable of communicating discomfort or difficulties to their caregivers.
“There are recognizable, yet often subtle, signs and symptoms that indicate dysphagia. When these signs occur, it is important for caregivers to address them as soon as possible,” Ryba urges. “Treatment and management will depend on an official assessment called a ‘swallowing study,’ which is commonly performed by a speech-language pathologist (SLP).”
Signs of dysphagia include:
- Additional time and effort spent at meals
- Food, liquid 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, gagging or choking while eating
- Weight loss
- Chest congestion
- Aspiration pneumonia
The Connection Between Dysphagia and Dementia
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 and/or decrease in level of consciousness, which requires increased care and supervision,” explains Ryba.
Dementia progresses differently in each person, so it can be difficult to know what to expect and when. However, dysphagia often presents in late-stage dementia patients who tend to have difficulty communicating and may even be nonverbal. For this reason, dementia caregivers should watch carefully for any signs of swallowing issues. “Aspiration pneumonia is one of the most common causes of death in Alzheimer’s patients,” Ryba laments.
If swallowing issues present in the early or middle stages of dementia, a family member may misconstrue the subtle signs and assume that their loved one is acting out or does not enjoy the food they are being served. However, perseverance and encouragement can’t solve this dilemma. Undiagnosed and untreated dysphagia could jeopardize a dementia patient’s well-being.
Treatment for Dysphagia
The first thing to do is make a doctor’s appointment and see if a referral to a speech-language pathologist may be necessary. An SLP will run tests (such as a swallow study, if necessary) to assess the type and severity of a senior’s dysphagia and determine next steps for minimizing choking and preventing aspiration. Swallowing disorders are often managed through diet modification with a focus on texture and moisture levels.
The type of dysphagia diet an SLP prescribes will depend on the cause and extent of a senior’s swallowing difficulties. For some, a normal diet with emphasis on softer foods and smaller bites may be effective, while others may need their foods pureed and their liquids thickened to a certain consistency. Finding the right dysphagia diet requires the expertise of a speech-language pathologist, otherwise incorrect diet modifications can make eating and drinking with dysphagia more dangerous.
10 Ways to Make Meals Easier With Dysphagia
Family caregivers may grow impatient during meals 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.
- Carefully plan and serve meals, snacks and beverages that conform to an SLP’s prescribed dysphagia diet. Try thickening 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 liquids 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.
- Serve foods with thicker gravies, sauces or other condiments to add moisture that assists with swallowing.
- Make ample time for meals to allow adequate chewing and complete swallowing.
- Remove distractions at mealtimes to allow for full concentration on eating.
- Use eye contact and encouragement with visual cues, such as opening/closing your mouth when the person is supposed to sip or bite.
- Be cognizant of 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 meals 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 than those that require utensils. Finger foods are less challenging to maneuver and allow dementia patients to tap into the automatic rhythms and movements 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.
Struggling to Swallow and End-of-Life Care
In many instances, such as temporary difficulties that result from a stroke or prolonged intubation, working with an SLP who specializes in dysphagia can maintain or restore a person’s ability to eat and drink safely. Each patient 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, swallowing exercises, thickening agents and eating techniques recommended by speech-language pathologists will eventually lose their effectiveness. Sadly, as these conditions progress, so does the severity of swallowing difficulties. Put simply, seniors with late-stage dementia “forget” how to swallow, lose weight and become increasingly frail.
“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 to guide their caregivers.