Caregiver’s Guide to Dysphagia in Dementia

Byline: Rinki Varindani Desai is an ASHA-certified medical speech-language pathologist and BIAA-certified brain injury specialist, specializing in the rehabilitation of cognitive-linguistic and swallowing disorders in adults. She is the founder and admin of the Medical SLP Forum, co-author of the mobile app Dysphagia Therapy and co-founder of Dysphagia Grand Rounds. Rinki currently serves on ASHA’s SIG 13 Editorial Committee as Associate Editor of Perspectives, on the Dysphagia Research Society’s Website, Communications, and PublicRelations Committee and has been selected to participate in ASHA’s Leadership Development Program 2017-2018. She has presented at national and international conferences on topics related to adult dysphagia and written numerous articles for leading SLP blogs and magazines. Originally from Mumbai, India; Rinki currently practices in Rochester, New York as Healthpro Rehabilitation’s SLP Team Leader for the Western NY region. You can follow her Medical SLP updates on Facebook and Twitter or reach out to her at rinkislp@gmail.com.

Dementia and Dysphagia

Dementia is not one specific disease. It is a broad term that describes a wide range of symptoms associated with a decline in memory, communication, and other thinking skills; severe enough to reduce a person’s ability to perform everyday activities (Alzheimer’s Association).

There are various types of dementia, with Alzheimer’s disease accounting for 60 to 80 percent of cases. Other types of dementia include Vascular Dementia, Dementia with Lewy Bodies and Frontotemporal Lobe Dementia. Among the many problems seen in individuals with dementia, there is growing evidence and concern regarding the presence of eating and swallowing disorders in this population, also known as ‘dysphagia.’

According to the National Institutes of Health, swallowing problems occur in about 45% of those who have been diagnosed with Alzheimer’s and other dementias. This number increases as the disease severity progresses; with some degree of dysphagia found in close to 80% of institutionalized elderly diagnosed with dementia.

Caregivers of people with dementia play a critical role in encouraging oral intake and in identifying swallowing problems in this population. This article discusses some of the challenges associated with dysphagia in dementia, and suggests strategies for caregivers to help enhance mealtimes for their loved ones.

Dysphagia Signs and Symptoms

It can be difficult to spot a person having difficulty eating and drinking, because the warning ‘signs’ can be so subtle. Some dysphagia signs and symptoms can be noted during or just after meals. There may be increased coughing or throat clearing, a wet or gurgly voice may be heard (especially when drinking liquids) or you might notice a person physically struggling with eating – spilling food from their mouth, holding food or chewing for too long, choking, or becoming fatigued during the meal. Over a longer period, caregivers may notice the person avoiding certain foods or may identify weight loss, dehydration, or recurrent chest infections; some of which can develop into pneumonia.

As caregivers, you can help prevent serious complications related to dysphagia by identifying the early stages at which swallowing problems begin. If any of these symptoms are present, be sure to consult with your physician as soon as possible. They will provide you with a referral to a speech-language pathologist (SLP) – a certified healthcare professional who plays a primary role in the assessment and treatment of eating and swallowing disorders (dysphagia) in individuals across the lifespan, including adults with dementia.

Common Causes of Dysphagia in Dementia

There are number of reasons why individuals with dementia may lose interest in eating and drinking or develop swallowing problems. Some of these include:

Physical problems: inability to hold or use utensils properly, inability to maintain proper posture during meals, weakness, lack of activity, tremors (commonly seen in Parkinson’s disease)

Sensory problems: inability to recognize food or drinks, inability to gauge food temperature, reduced awareness of hunger and thirst, changes in smell and taste, problems in vision

Environmental problems: excessive noise, too much visual stimulation, poor lighting, unpleasant odors, or uncomfortable room temperatures leading to increased confusion

Poor oral hygiene: eating may be painful due to the person having a dry mouth, gum disease, mouth ulcers, poor oral hygiene, poor dentition, missing or ill-fitting dentures

Medication side effects: new medications and dosage changes may affect appetite as well as impact the person’s ability to swallow effectively

Communication and cognitive problems: inability to express needs and food preferences, difficulty following instructions to participate in meals, difficulty remembering to eat, increased confusion leading to unwanted behaviors during meals

Swallowing problems: some foods may need to be avoided or modified if the person has any kind of oral, pharyngeal, or esophageal swallowing impairment. A speech-language pathologist is a skilled professional who will identify the swallowing impairment and help determine the least restrictive solid food texture and liquid consistency that would be safest for oral intake.

All these problems can make mealtimes frustrating and stressful for caregivers of people with dementia. It is important to remember that dementia varies from person to person and these problems might look different in your loved one, depending on the type of dementia and stage of their disease process.

Consequences of Dysphagia

The presence of dysphagia in individuals with dementia can lead to serious consequences such as weight loss, malnutrition and dehydration; all of which can lead to other serious medical complications in older adults. It can also lead to lung-related complications such as aspiration pneumonia, which may cause the person to be hospitalized and even become life-threatening. In individuals with Alzheimer’s disease, pneumonia accounts for nearly 70% of the causes of death.

All these factors combined can increase loneliness, isolation, depression and loss of dignity surrounding meals. Dysphagia does not just impact a person’s ability to swallow; it significantly impacts their overall quality of life.

Mealtime enhancement tips for caregivers

Watching a loved one lose interest in eating or drinking, choking, or having difficulty swallowing can be heartbreaking. Caregivers can help their loved ones in many ways throughout the dementia disease process to optimize food intake, increase safety during meals, minimize risks of aspiration and to enhance mealtimes. Here are some tips that can help:

Positioning
Make sure the person is in a comfortable, upright position during meals, preferably sitting out of bed if possible, during meals. If the person’s head tilts backward, help move it to a more forward position. Ensure they are not slouching or leaning over to one side. To aid digestion, keep the person upright for 30 minutes after eating. Your SLP may recommend some additional postural strategies to maximize your loved one’s swallow safety.

Minimizing Distractions
Minimize environmental distractions during mealtimes. Serve meals in quiet surroundings, away from the television and other distractions. Avoid placing unnecessary items on the table that might distract or confuse the person. Use only the basic utensils needed for the meal. In some cases, too many foods at once may be overwhelming for some individuals. Simplify, by serving one or two dishes at a time.

Safe Feeding and Swallowing Strategies
Assist your loved one with feeding if they require help or if instructed by your SLP. Follow some of these strategies to ensure swallowing safety:

• Alternate small bites and sips. Feed the person patiently, with a slow rate of intake.
• Make sure all the food and liquid is swallowed before feeding the next bite.
• Frequently check the mouth to make sure there is no accumulation of food, especially in the cavities of the cheek or on the tongue.
• Feed meals when your loved one is most alert and attentive. Some might eat better if provided with smaller meals throughout the day, instead of three big meals at a time.
• Ensure dentures are cleaned and well-fitted before feeding. Also ensure proper oral care is being completed throughout the day. Maintaining good oral hygiene is critical; poor oral health is one of the leading risk factors of aspiration pneumonia in individuals with dysphagia.

Adaptive Equipment and Finger Foods

Simple adaptive eating tools can help some people with dementia remain independent while dining. These include items such as plates with large rims, cups with lids and wide bases, flexible straws, utensils with large handles, and non-slip placemats or suction cups to keep dishes from moving on the table. Consult with an occupational therapist about which tools might be most helpful for your loved one.

If the person has significant difficulty using utensils, try bite-sized foods that are easy to pick up such as chicken nuggets, fish sticks, sliced sandwiches, cheese sticks, orange segments, carrot sticks, steamed broccoli etc. to help improve oral intake.

Providing Cues

Providing your loved one with dementia with different types of visual, verbal, sensory and physical cues can be very effective during meals:

• Visual cues may be as simple as eating with the person as a reminder that it is mealtime, providing eye contact or using memory aids to remind them of their mealtime schedule. Dishes that are different colors from the food may help the person distinguish the food more easily.
• Clear and easy-to-understand verbal prompting may also be needed. Depending on the person’s language ability, this may mean giving very specific directions such as “open your mouth”, “chew”, “swallow”; offering simple choices such as “Do you want soup or a sandwich?”, or asking simple yes/no questions rather than open-ended ones.
• Sensory cues, especially those involving smell, can help prepare the person to know it is time to eat.
• People with more advanced dementia may also need physical prompting (tactile cues) to help initiate the process of eating. This might include placing a finger or hand under the person’s grasped hand on the fork and guiding it to the mouth or touching a spoon to their lip before feeding them.

Diet modification

For some people with dysphagia, the texture of a ‘normal’ diet can simply present too many risks, in which case, specific recommendations may be given by the SLP about making changes to the texture or consistency of food/liquids, to reduce the risk of choking and other dysphagia-related complications.

Though it will sometimes be necessary to make these changes to food texture or to thicken liquids, it is important to still try to maintain the look of a normal diet, as this can preserve your loved one’s enjoyment of food and help people with perceptual or memory difficulties recognize what they are eating. In addition to modifying diets, the speech-language pathologist may work with your loved one to help improve their swallow function using a combination of evidence-based exercises and swallow strategies to optimize their oral intake and safety.

Quality of Life Considerations

Sometimes, if the dysphagia becomes severe especially as the dementia progresses, artificial nutrition or tube feeding may be recommended for your loved one. Some physicians may recommend a nasogastric tube (NGT) to help deliver nutrition via the nose into the stomach. Sometimes, nutrition may be provided intravenously as well. These types of short-term measures are good to help someone with swallowing problems recover from acute illnesses such as a urinary tract infection.

A more permanent solution is a PEG (Percutaneous Endoscopic Gastrostomy) feeding tube, which may be recommended by your physician. There is a lot of scientific evidence available now to tell us that artificial nutrition such as PEG tube-feeding does not improve patient outcomes or quality of life in patients with advanced dementia who have decreased oral intake.

According to the American Geriatrics Society Feeding Tubes in Advanced Dementia Position Statement: “When eating difficulties arise, feeding tubes are not recommended for older adults with advanced dementia. Careful hand feeding should be offered because hand feeding has been shown to be as good as tube feeding for the outcomes of death, aspiration pneumonia, functional status, and comfort. Efforts to enhance oral feeding by altering the environment and creating patient-centered approaches to feeding should be part of usual care for older adults with advanced dementia.”

Food for Thought

Caring for a person with dysphagia and dementia presents a set of unique and difficult challenges. Caregivers must consult with speech-language pathologists and physicians to discuss the best and safest dysphagia management, nutrition, and hydration options for their loved one; keeping in mind any advance directives, disease severity and what it is their loved one would want for themselves. With the right training, knowledge, and support; caregivers can significant enhance the quality of life of their loved ones with dementia. Regardless of a diagnosis, every individual deserves to ‘dine with dignity.’

References:

• Alzheimer’s Association. http://www.alz.org/
• American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee. American Geriatrics Society Feeding Tubes in Advanced Dementia Position Statement. J Am Geriatr Soc. 2014;62(8):1590–1593.
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