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What Do Mealtime Difficulties Look Like?
Changes in Recognition and Motor Planning
A person living with dementia may not be able to recognize the function of tools involved in eating or they may have difficulty organizing the motor plans to carry out movements needed for eating and drinking, such as lifting a fork to the mouth. Agnosia is the term for changes in recognition that result from damage to the brain. Apraxia is the term for difficulty carrying out skilled movements, even though strength may still be intact. A person with Apraxia may want to carry out a movement, but they can’t. Apraxia results from damage to the part of the brain that controls motor planning. Those living with dementia may have apraxia. It isn’t laziness or stubbornness– The motor programs in their brains are not functioning the way they used to.
Download our free Apraxia Guide
Learn about assistance with task initiation
Sources 1-6
Disorientation and Confusion
A person who is disoriented may not be aware of the time, place, or situation. They may even be unsure of who they are. A person living with dementia may not realize that it is mealtime. They may believe they are supposed to be somewhere else. They may feel that they are in an unfamiliar location. Their priority may be to figure out what is going on, where they are, and why they are there.
Learn about knowing your person’s role
Fear or Concern
Sometimes, a person living with dementia can’t verbally communicate that they are scared or concerned, so actions like pushing food away can actually indicate a fear of some sort. For example, they could be afraid that the food is poisoned or concerned that their children have not yet been fed. They could be worried that they need to pay for the meal or they could be fearful that this is something they aren’t supposed to eat. They may be concerned as a result of difficulties that occurred around meals when they were a child. They could even be scared because of recent negative mealtime experiences– They may not remember exactly what happened, but the bad feelings could still be present.
Learn about discovering the root of the fear
Learn about knowing your person’s role
Learn about adjusting presentation
Changes in Vision
A person living with dementia may have visual changes, such as decreased sensitivity to contrast and changes in depth perception. These changes can make it difficult to see certain items and understand where exactly they are, such as a green bowl on a green placemat, particularly in a dimly lit room.
Learn about adjusting presentation
Changes in Smell and Taste
A person living with dementia may experience changes in smell and taste, which can lead to believing that food hasn’t been seasoned at all or is improperly seasoned or even poisoned. Of course, if someone new is preparing their food and is not seasoning it properly, that is a separate issue. However, for some, it may take a lot of extra salt or a lot of extra sugar for them to feel like their food tastes right.
Learn about adjusting presentation
Textural Aversions
A person living with dementia may frequently expectorate, or spit out, certain textures, like ground meats. Or they may not like how certain foods look because the color seems off to them as a result of visual changes, they can’t understand what it is, or they are having difficulty chewing or swallowing and do not realize it.
Learn about adjusting presentation
Learn about respecting preferences
Not Hungry Yet
Sometimes, as humans, we are not in the mood to eat. We may be full. If this is happening consistently (they are eating, but not at the designated times), there may be a scheduling issue where the designated mealtimes do not match with what the person’s body wants.
Distractions and Over-stimulation
We may like to provide those living with dementia with choices when possible, but if there are too many choices in front of someone, it can be hard to know where to begin. It can also be distracting if there are multiple conversations going on in the room, if there is loud music playing, or if the area is cluttered.
Learn about adjusting presentation
Changes in Swallowing
The swallow involves coordinated muscle movements throughout the mouth and throat.
Presbyphagia refers to normal swallowing changes that are associated with aging. This can include decreased saliva production, reduced tongue strength, delayed swallow initiation, larger bites and sips needed to trigger the swallow, and more.
Dysphagia, or difficulty swallowing, may be diagnosed in a person living with dementia, and it typically occurs along with normal age-related swallowing changes. Those living with dementia experience cognitive and sensory deficits that result in difficulties in the setting of this already changing system. Over time, people who are living with dementia tend to have significantly delayed swallows with larger amounts of foods and liquids heading deeper into the throat before a swallow is actually initiated.
Some related issues include:
– Coughing and Wet Vocal Quality
– Difficulty Chewing: Mastication, or chewing, may be taking a long time. This can happen as a result of dental issues, muscle weakness, cognitive changes, and more.
– Dry Mouth: Saliva helps us break down and moisten our food to make it easier to swallow. Some conditions and medications can cause xerostomia, or dry mouth. This may make swallowing more difficult.
– Pocketing: Bits of food may be held in the cheeks, unnoticed, which can pose a choking hazard.
Learn about verbal and visual cues
Learn about diet texture changes
Sources 7, 9, 12, 13, 15, 17-20
Coughing and Wet Voice
In your throat, you essentially have two tubes, the esophagus, or food tube, in the back and the trachea, or windpipe, in the front. Your vocal cords are located in your larynx, or voice box, which is right on top of the trachea. In order to orient yourself a bit, you can feel where your voice box is generally located by finding your Adam’s Apple, which is the part of your larynx that sticks out. When you swallow, you can feel your voice box moving up and out of the way, a process coordinated by multiple muscles and directed by motor programs in your brain.
When something just starts to enter the airway, reaching just above the vocal cords, we call that penetration. A little bit of penetration may happen to everybody. It isn’t necessarily a big deal.
When something starts to slip below the vocal cords, we call that aspiration. When we are eating or drinking and something starts to go into the airway (down the “the wrong tube”), what happens? We cough. We eject that food or drink so that it doesn’t get into our lungs.
A little coughing every now and then may just be normal. However, if someone is suddenly coughing a lot during meals, that is an indicator that something could be going wrong with the swallow. Additionally, if their voice sounds gurgly or wet, that indicates that something is sitting on their vocal cords, which are right above the airway.
So what happens if someone is aspirating a lot– if food and liquids keep going into the airway? Recurrent episodes of aspiration can be dangerous, particularly for those whose health is otherwise compromised because they can lead to a lung infection called Aspiration Pneumonia (this is different from Community Acquired Pneumonia and is not contagious). However, the presence of aspiration does not necessarily mean someone will develop Aspiration Pneumonia. Predictors of developing Aspiration Pneumonia include poor oral care, dependence on someone else for assistance with eating and drinking, tube feeding, impaired airway protection, and impaired overall health status.
Learn about verbal and visual cues
Learn about diet texture changes
Sources 7,-23
Weight Loss and Dehydration
As a result of difficulties that occur at mealtime, certain medication side effects, and other causes, those living with dementia may experience loss of appetite and/or decreased intake of foods and liquids. This can lead to weight loss and dehydration. Someone living with dementia may not know exactly what feels off, but they may feel off and they may not be communicating this verbally. Signs may include changes in urination, physical or verbal aggression, increased confusion, and more.
It is important to note, however, that decreased eating and drinking at end of life is a part of the natural dying process.
How Can We Respond to Mealtime Difficulties?
Assistance with Eating
A person living with dementia may need a little help getting started due to difficulty recognizing the task or how to initiate it. Approach your person from the front, greet them, let them know who you are (don’t make them guess!) and offer to help them eat their meal. Try to place the utensil or finger-food in their hand and help them gently lift it to their mouth. You may be able to step back once they get started, or they may require assistance throughout the meal. An occupational therapist can help guide you in the best way to provide assistance and can help you determine how much help is needed.
Go back: Apraxia
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Verbal and Visual Cues
A verbal cue is something that you say in order to help remind your person to do something, such as the first step of a task, or a reminder of the overall activity. For example, “It is mealtime. We are eating lunch!” or “Lift your cup to your lips.” Verbal cues may need to be provided only at the beginning of a meal, or they may be needed throughout. Verbal cues should be consistent (don’t keep changing them up– familiarity helps) and individualized for the person.
A visual cue is something your person can see, like a sign with words and/or images that remind your person what to do. These may be simple step-by-step instructions or an image with just one or two words written beneath it. Be sure to use high contrast colors in your signs in order to grab your person’s attention. And avoid using too many signs– Just one at a time. We have some examples of signs over in the Printables Collection. A speech-language pathologist can help you develop the appropriate cues and can guide you in how to use them to communicate with your person during mealtime.
Go back: Confusion Swallowing Difficulty Coughing
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Discover the Root of the Behavior
All behaviors in Dementia are a form of communication. For example, a person may be pushing away a meal due to fear, rather than explicitly stating, “I am afraid to eat this.” But the way we address this needs to be individualized. Consider this: If your person is refusing to eat because they are fearful that their food is being poisoned, some possible solutions are to cover their plate in plastic wrap, to provide them with their food in to-go containers, to have them assist in prepping their own food, or to eat meals together. But if that isn’t the root of the behavior, providing a plate covered in plastic wrap is unlikely to help. Your person may be worried that they need to pay for the meal, in which case, you can gently reassure them that the meal has already been paid for. But again, if that isn’t the root of the problem, this will not be the solution. Regardless of what you discover to be the root, never try to convince them that their fear or concern is irrational. Instead, show them that you are on their team and that you want to solve the problem together.
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Know their Role
Who is your person? What do they value? If your person feels that they are not functioning in their role at mealtime, this can cause frustration and confusion. For example, if your loved one is someone who likes to take care of others before themselves, they may be concerned that you have not eaten yet. They may desire to assist in some way. This may mean reassuring them that you’ve already eaten or eating with them. It may mean prepping the meal together or providing them with a task to help out, such as folding napkins or setting the table. The person’s preferred role may change over time.
Go back: Confusion Fear
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Adjust the Presentation
Turn on the lights so they can see, let the sun in if possible, and use high contrast materials to ensure they have the best chance of seeing and recognizing their plates, bowls, cups, and utensils. For example, you may try to use a light bowl on a dark placement in a contrasting color. Decrease clutter to avoid confusion and over-stimulation. Determine if there are any special items that can make mealtime feel safer, easier, and less confusing. Although there may be certain items recommended by occupational therapists (example: adaptive plates and utensils) and speech therapists (example: cups dispensing a certain amount of liquid at a time), a person living with dementia may prefer certain plates, bowls, or cups (example: a favorite mug). This decision can be discussed with speech and occupational therapists.
Go back: Fear Sensory Changes Aversions Distractions
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Respect their Preferences
Gain familiarity with their dietary restrictions and preferences in order to convey respect for their choices. Involve a dietitian if they wish to learn about individualized healthy choices and integrate those with their preferences. Remember to check in as preferences change and be aware that they may revert back to earlier-in-life habits. Ensure that your person has an opportunity to complete familiar routines. Anyone, whether or not they are living with dementia, may decline a meal because their preferences (religious, spiritual, or otherwise) are not being honored.
Go back: Fear Sensory Changes Aversions Not Hungry Distractions
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Slow Down
Sometimes, a person living with dementia may not realize how quickly they are eating. They may add more and more food to their mouth before swallowing. This can pose a choking hazard or it can end with them spitting all the food out. A speech-language pathologist can help you to establish appropriate visual, verbal, and/or tactile cues to encourage decreased rate when eating and drinking.
Go back: Swallowing Difficulty Coughing
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Change their Diet
Dietary changes and supplements should be discussed with a dietitian and a doctor. You may wish to report changes, such as your person’s decreased appetite or increased desire for salt and sugar, for example. Talk to these medical professionals to learn about the healthiest options, but know that a healthy option can take into account both safety and quality of life.
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Alter Diet Texture
This should be done under the guidance of a doctor and a speech-language pathologist. A speech-language pathologist can help you to assess whether softer foods or altering presentation of liquids may help improve your person’s safety and quality of life. If someone other than a dysphagia specialist recommends thickened liquids, it is important to remember the following: Thickened liquids negatively impact quality of life and are associated with an increase in urinary tract infections, fevers, and dehydration. They are not a one-size-fits-all cure and can hurt more than they help for many individuals. There are many other ways (see below) to decrease risk of developing an infection related to aspiration (foods and liquids getting into the airway).
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Mitigate the Risk of Aspiration Pneumonia
Sources: 7, 8, 10, 11, 20-25
- Oral Care: We know that poor oral hygiene can lead to increased risk of developing aspiration pneumonia, a lung infection that can occur in certain individuals who are aspirating and whose health is otherwise compromised. So we know that assisting your loved one in brushing their teeth at least twice a day is extremely important. A lot of people like to use tools other than toothbrushes for tooth-brushing, but it is important to use a toothbrush and toothpaste because the friction provided by the bristles of the toothbrush is pertinent for removing debris and bacteria. Do not use lemon glycerin swabs to provide oral care as these can cause tooth decay and dry out the mouth. Please be aware that the absence of teeth does not mean oral care isn’t needed. It is important to brush the tongue and the gums as well. View our Guides for some tips and tricks because we know assisting your person in this task is easier said than done. And please speak with your dentist if you are really struggling with oral care or using dentures.
- Upright Positioning: We recommend sitting up straight during and for at least 30 minutes following meals to decrease risk of foods and liquids going “down the wrong tube.” This is extra important for someone with Laryngopharyngeal Reflux (LPR) or Gastroesophageal Reflux Disease (GERD), also known as acid reflux. We have guides on LPR and GERD coming soon!
- Individualized Treatment Plan: No two people are the same, so it is important that a team of experts guides you through an individualized plan to decrease risk of infections, including but not limited to aspiration pneumonia. If you notice consistent coughing during meals, choking episodes, holding food in the mouth, shortness of breath during and following meals, or a wet sounding voice, these changes should be reported to a doctor. Depending on any other issues your loved one may be experiencing, such as reflux, pain during the swallow, or the sensation of food feeling stuck, you may also be referred to an Ear, Nose, and Throat Doctor and a Gastroenterologist.
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Support at End of Life
When someone is no longer able to communicate in the way they once did, it can be difficult to tell whether or not they want to eat. And you may find yourself offering many different foods and liquids and worrying that they must be starving. It is important to discuss this with the doctor. End of life practices are different from practices earlier in the disease. Someone who is dying does not experience hunger and dehydration in the way they once did because the body does not need food and water in the same way. If they indicate they are hungry or thirsty, provide food and drink (as directed by the doctor). Otherwise, under the doctor’s guidance, you may allow their body to be the guide. This may mean, for example, a small bite of a favorite pudding or ice cream if they accept it. It depends on the recommendations of the doctor and the speech therapist, as well as the person’s response. Hospice care can provide you and your person with compassion and support to navigate end-of-life.
Feeding tubes may be considered when someone can no longer eat and drink by mouth. However, research overwhelmingly finds that feeding tubes neither prolong life nor enhance quality of life in end stage dementia. Additionally, they carry risks such as infection and aspiration. It is also important to note that while some people with feeding tubes may be unable to eat or drink anything by mouth, some individuals with feeding tubes can still eat by mouth for pleasure if tolerated and desired and if recommended by the doctor.
Note that nothing stated here should be construed as medical advice. Only the doctor can provide you with an individualized recommendation.
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Who Can Help with Mealtime Difficulties?
Dentist
See a dentist specializing in dementia care if your person needs dentures, needs their dentures adjusted, has difficulty with tooth-brushing, has abnormal coloring on their tongue or growths in their mouth, has not performed oral care for a long time, or has any mouth pain. Let them know that your person has dementia and additional time will be needed in order for the appointment to be effective.
Doctor
In general, a primary care doctor should be consulted given any significant change in your person. Changes in behavior could be related to progression of the disease or changes in the environment, but they could also be signs of a Urinary Tract Infection, Aspiration Pneumonia, or another type of infection. See a doctor specializing in Dementia care if your person is displaying signs of an infection, such as a fever, decreased intake of foods and liquids, and/or shortness of breath. You should also let the doctor know if your person is complaining of dry mouth or if there are any growths or changes in color inside of the mouth.
Specialists may include but are not limited to: Cardiologist, Ear, Nose, and Throat Doctor, Gastroenterologist, Gerontologist, Psychologist, Pulmonologist, Neurologist, Neuropsychologist
Nurse Practitioner (NP)
Sometimes, individuals opt to see an NP. Be sure to report the same information to your NP that you would to your doctor. Note, in some states, NPs are directly overseen by doctors.
Nutritionist, Certified Nutritionist (CN), Certified Nutrition Specialist (CNS), Registered Dietitian (RD), or Registered Dietitian Nutritionist (RDN)
If your loved one is struggling to maintain weight or hydration, speak with someone who can help. Please note, while Nutritionists and Dietitians both assist in nutrition, Dietitians can assist in diagnosis and treatment.
Occupational Therapist (OT)
An OT can support your person in safely participating in their daily activities and roles, and this includes participation in mealtime. They can provide instruction in modifying the environment and the way the task is done in order to facilitate success. For example, if your person is struggling to use a fork, they can help you to determine why and if there are any appropriate adaptive utensils to use or any other form of assistance that can be provided.
Physician’s Assistant (PA)
Sometimes, individuals opt to see a PA who is directly overseen by a doctor. Be sure to report the same information to your PA that you would to your doctor.
Respiratory Therapist (RT)
An RT can help when your person is diagnosed with an acute condition that impacts breathing, such as Aspiration Pneumonia.
Speech-Language Pathologist aka Speech Therapist (SLP or ST)
An SLP can diagnose dysphagia (difficulty swallowing), assess and treat communication difficulties that impact mealtime, and support your person in eating and drinking in a way that values both safety and quality of life. They can provide education and assist you, your person, and your doctor in decision-making related to diet texture and alternate means of nutrition, if applicable. An SLP may recommend an instrumental assessment of the swallow. This may be an x-ray, which is called a Videofluoroscopic Swallow Study or a Modified Barium Swallow Study (MBSS). Alternatively, they may recommend scoping to view the swallow, which is called a Fiberoptic Endoscopic Evaluation of the Swallow (FEES).
Palliative Care vs. Hospice Care
Palliative care can be provided at any stage of a serious illness, not just in the terminal phase. It can be offered alongside curative treatments and is not limited to end-of-life situations. The focus of palliative care is to improve the quality of life for patients and their families with services such as pain management and emotional support. Hospice care is typically initiated when a patient has a prognosis of six months or less to live. It is designed for individuals who have decided to stop pursuing curative treatments and focus on comfort and quality of life. The primary goal of hospice care is to provide comfort and support to individuals in the final stages of life. Hospice care does not aim to cure the underlying illness. Instead, it focuses on enhancing the patient’s comfort and quality of life during their remaining time. Hospice does not hasten death, as some believe. Hospice supports a person through the process of dying and provides assistance to family members as well.
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None of the information on this website should be interpreted as medical advice. You must discuss all medical decisions with your medical doctor.