Caring for Dementia

– A consistent mealtime routine
– Reminders to eat
– Having snacks accessible in living and sitting areas
– Frequent verbal reminders
– Possible physical assistance

Disorientation

Disorientation is a common symptom experienced by individuals living with dementia, often leading to challenges in recognizing meal times or maintaining focus on eating. For instance, in long-term care facilities, where individuals are typically assigned specific seats, any deviation from these familiar arrangements can trigger disorientation. This disorientation may arise from changes in seating or even alterations in the dining environment. It is also possible disorientation could be related to the presentation or timing of meals. This disorientation can lead to a refusal to eat, as individuals may struggle to comprehend or adjust to these changes.

Tips:
– A consistent mealtime routine
– Seat at familiar spots
– Seat next to familiar people
– Breakfast and lunch foods during the day, heavier meals in the evening
-Stick with known preferences

Difficulty recognizing food

As cognitive function declines, we must acknowledge that some items may be misinterpreted for purposes other than their intended use. For instance, individuals with dementia may mistake a paper napkin for food and attempt to consume. Also see perception distortions below.

Tips:
– Clear non food items like salt/pepper, napkins, table decorations etc.
– If you only have condiment packages available, consider squeezing the condiment out onto the plate, rather than placing the packages on the plate.
– Keep foods in their original form if their diet allows
– Use foods that are familiar to them

Forgetting how to use utensils

Dementia is a progressive disease, inevitably worsening over time. As this decline happens, individuals may struggle with basic tasks such as using utensils like spoons, forks, and knives. Rather than immediately intervening to feed them, our goal is to uphold their independence for as long as possible. To reinforce comprehension, we can attempt to demonstrate the motion of eating or place food on the utensil in their hand, encouraging them to participate. If coaching and demonstration prove ineffective, we may need to adapt our meal strategies to maintain their independence. Below are some helpful tips for navigating this challenge.

Tips:
– Demonstrate the movements you want them to do (i.e. putting food on fork)
– Offer finger foods
– Offer wet foods or soup in a cup
– Cut food into bite-sized pieces

Inability to initiate and sequence activity

One prevalent aspect of dementia is the difficulty in initiating activities. Individuals may have food in front of them and be aware that it is meant for consumption, yet struggle to start eating. This challenge can be likened to a disconnect within the brain: while visual cues signal the need to eat, the transmission of messages from the brain to the body to execute the task is disrupted.

Tips:
– Break down the task into easy steps
– You may have to motion or verbally state “pick up your food” “chew your food” “take a bite”
– Use encouraging words and an encouraging tone of voice
– Soft touch on the shoulder or arm

Easily Distracted

Difficulty in maintaining focus and attention is quite common as individuals with dementia often struggle to concentrate, particularly when exposed to environments with high levels of noise or movement. In these circumstances, their attention may shift away from the act of eating, leading to reluctance or refusal to consume meals. When we have sensory overload, where the abundance of external stimuli overwhelms the individual’s cognitive capacity, it makes it challenging to engage in any task.

Tips:
– Face them towards an area with minimal distractions such as looking out the window
– If towards a wall, dress it up with some artwork and décor for an inviting environment
– Limit people in the environment that can be vocal or distracting
– Attempt to limit background noise, and only provide one source of auditory stimulation (whether it’s a conversation, television or music)
– Gentle touch on the shoulder or arm
– Remove empty seats at the table

Perception Distortions

Altered perception is a common challenge encountered when addressing meal refusals. For instance, if food is presented on a white plate against a white tablecloth alongside a white mug, the low contrast between colours may hinder the individual’s ability to distinguish the items. Therefore, it is important to ensure clear differentiation by using high-contrast colours to enhance visibility of food items. Simplifying the dining table by reducing distractions, décor and clutter can assist individuals in focusing on and engaging with their meals.

Tips:
– Use high contrasted colours (light against dark or dark against light)
– Use a red coloured plate, with a blue coloured cup on a white table cloth, this will allow the person to differentiate the hardware and utensils from the table.
– Avoid patterned table cloths, plates and chair covers.
– Be mindful of things in their environment they can perceive as a “danger” (i.e. a coat rack in the corner they might believe is a person watching them)

Inability to recognize hunger

Depending on the stage of an individual’s dementia, they may lose the ability to recognize the sensation of hunger. While they may acknowledge experiencing discomfort, they may struggle to attribute it specifically to hunger. This lack of recognition can complicate mealtimes, as individuals may not initiate eating without a clear understanding of their body’s cues. Caregivers must remain attentive to subtle signs and cues and use strategies to encourage regular eating habits, even in the absence of clear hunger signals.

Tips:
– Understand a person’s “hunger schedule”, when are they most hungry? When are they least hungry?
– Pay attention to a persons non-verbal cues, do they become agitated or restless when they are hungry?

Inability to communicate needs and preferences

Individuals may experience difficulties with language, verbal expression, and comprehension, making it challenging to effectively communicate their preferences, desires, or concerns related to food and eating. Without the ability to express their needs or articulate dissatisfaction, people with dementia may just refuse to eat, and provide more subtle non-verbal cues that they aren’t interested or satisfied.

Tips:
– Provide simple choices
– Provide visual cues of choices if understanding words is difficult
– Pay attention to facial expressions
– Are they playing with their food or moving it around?

2. Physical/Functional Barriers

Swallowing difficulties

Various ailments can lead to swallowing difficulties, with strokes and advanced dementia being among the most prevalent. When an individual experiences difficulty swallowing, adjustments to their diet textures may be necessary. Different thickness levels of liquids and varying food textures can be explored to accommodate individuals with swallowing challenges. It is essential to tailor their diet to ensure safe and comfortable swallowing, while addressing their specific needs and limitations.

Tips:
– See a dietician or a speech-language pathologist to have a swallowing assessment completed. They will ensure you are receiving the correct texture of food and drink for the persons current abilities.

Sensory Changes

Along with cognitive decline, we see sensory changes. Vision, hearing, touch, smell and taste can all become affected. You may see someone who enjoyed a particular type of food all their life not enjoy it anymore, or vice versa.

Let me tell you a personal story… My Gran was from Britain, grew up in a posh family, enjoyed her Sunday roasts, her tea and cookies, and toast in the mornings. Cheese, ketchup, spaghetti, were some foods she either didn’t like, or never ate a day in her life. Well my Gran had a nacho Dorito of mine one day, and her eyes lit up. She absolutely loved it. This could be possible for two reasons, the sensory changes in her brain (change of taste) may have actually allowed her to enjoy flavours she never liked before. Another conclusion we came to could of just been that she had never eaten foods or dismissed those types of foods, and with dementia, she “forgot” she didn’t like them.

Tips:
– Introduce new foods to see if their taste preferences have changed
– If you’re looking to go healthier and they enjoy sweets/junk, you can start by introducing new foods amongst the sweets. (i.e. If they like chocolate: introduce nuts, seeds and raisins to make a trail mix)

Medication Side Effects

Certain medications prescribed to manage dementia symptoms or comorbid conditions can lead to undesirable effects such as stomach discomfort, loss of taste or appetite, or even dysphagia (difficulty swallowing). These side effects can diminish the individual’s desire or ability to consume food and beverages. Also, medications that cause drowsiness or confusion may further contribute to disinterest in eating.

Tips:
– Closely monitor side-effects to medications
– Speak with a physician if you notice the medication affecting food intake.
– Many medications are to be given with food, so if a person is taking medication but refusing food, it’s important to speak with a healthcare provider to avoid internal organ issues

Discomfort or Pain

Discomfort and pain can contribute to mealtime refusal or reduced intake of food and beverages. Physical discomfort, such as gastrointestinal issues can cause discomfort when digesting foods, a person may not feel like eating if they are bloated or having issues with their stomach. Dental problems can cause discomfort when eating or sensitivity when eating or drinking something hot or something cold. Additionally, cognitive impairments may make it challenging for individuals to communicate their discomfort effectively, leading to undetected or unaddressed pain.

Tips:
– Assess for signs of discomfort and pain during meal times
– Keep a bowel movement schedule if you’re worried about constipation
– Offer fruits and fiber to encourage bowel movements
– Ensure dentures fit properly
– Ensure dental pain is being addressed

Mobility issues

Mobility issues can cause someone to refuse to eat. Especially if they have difficulty, sitting or standing on their own. Those with mobility issues might have to depend on the caregiver to provide physical assistance to ensure they are eating enough, and at the right times. Another concern related to mobility is the frequency and urgency to pee. Some people may refuse to eat or drink because they don’t want to have frequent urges to use the bathroom.

Tips:
– Keep snacks and water on a table next to the chair or sitting area.
– Provide verbal prompts or physical assistance to the bathroom 20 minutes after they eat or drink
– Provide heat-up microwavable meals in the fridge if the person has a fear of falling when preparing a meal.
– Provide physical assistance to the dining area to ensure they eat

Motor Skill Decline

Individuals may experience a gradual deterioration in fine motor coordination and control, making it challenging to perform tasks such as using utensils to scoop or stab food. This decline in motor skills can result in difficulties with grasping utensils, manipulating food, and coordinating movements necessary for eating. Individuals may exhibit frustration, hesitation, or avoidance behaviours during meals, leading to mealtime refusal or reduced food intake.

Tips:
– Adaptive utensils, these are specifically made to address challenges in fine motor skills.
– Offer finger foods
– Offer soup and wet foods in a mug
– Assist or motion bringing the spoon/fork up to their mouth
– Depending on the severity of decline, you may have to feed them entirely.

Food sensitivity

Food sensitivities to texture, taste, and smell can significantly influence a willingness to eat and drink. Individuals may develop heightened sensitivity or aversion to certain food textures, tastes, or smells. For example, they may find certain textures uncomfortable or difficult to chew and swallow, leading to mealtime refusal.

Tips:
– Navigate any sensory changes
– Offer a variety of foods with different textures, flavours, and aromas to understand what they like and don’t like
– Assess preferences often to be able to utilize different foods

Chewing Fatigue

People with dementia may experience muscle weakness or fatigue in the jaw and facial muscles, making prolonged chewing difficult and exhausting. For individuals with dentures, poorly fitting or uncomfortable dentures can intensify chewing fatigue, leading to discomfort and frustration during meals.

Tips:
– Provide foods that are easy to chew (Dark meat chicken vs. Steak).
– Use sauces like gravy and dressings to make it easier to chew.
– Choose soft foods like muffin opposed to hard cookies
– Ensure dentures are properly fitted
– Do not provide hard foods to people with few teeth
– Encourage water breaks between long chews

3. Emotional Barriers

Depression

Feelings of sadness, hopelessness, and apathy associated with depression may diminish appetite and motivation to eat. Apathy is a lack of motivation that we can see with dementia, but with an added diagnosis of depression apathy is much more prevalent. Depression may also lead individuals to deliberately refuse food as a means of expressing their desire to die.

Tips:
– Look for the signs of depression: withdrawal, isolation, expressed hopelessness, expressed helplessness, expressed statements of feeling or being “no good”, frequent crying or anger outbursts, frequent sleep or insomnia.
– Speak with a healthcare provider if you notice the above symptoms along with the refusal to eat or drink. It is possible it could be a passive way of the person expressing their wish to die.

Fear or Mistrust

People with dementia may develop heightened anxiety or paranoia, perceiving threats or dangers in their surroundings. Fear of unfamiliar foods, mistrust of caregivers, or suspicion of the dining environment can all contribute to apprehension and resistance towards eating. Individuals may express their fear or mistrust through verbal refusal, physical resistance, or avoidance behaviours during meals.

Tips:
– Keep a consistent routine
– Keep the food consistent
– Establish a good rapport to build trust
– Avoid whispering to others
– Avoid talking on the phone to others during meal times
-Offer reassurance or support

Overwhelmed

Individuals with dementia may experience overwhelming feelings during meal times, particularly when faced with constraints such as time limits, large portions of food, or crowded dining environments. Large portions of food may be intimidating or overwhelming for individuals with diminished appetite or reduced ability to manage utensils. Moreover, crowded or noisy dining environments can further intensify feelings of overwhelm, making it difficult for individuals to focus on eating.

Tips:
– Small portions of food and offer seconds
– Calm environment
– Allow person to eat at their own pace
– Do not attempt to clear the table before they are finished

Embarrassment

People with dementia may become increasingly aware of their cognitive and physical limitations, leading to feelings of embarrassment about their inability to eat in a socially acceptable manner. Difficulties with using utensils, managing food spills, or experiencing swallowing difficulties in front of others can all contribute to feelings of embarrassment during meal times.

Tips:
– Deliver food how it’s to be eaten (i.e. cut food into small pieces before you deliver the plate)
– Allow person to be as independent as possible
– Use a clothing protector that doesn’t look like an oversized baby bib
– Do not wipe their face with anything other than a napkin
– Do not scrape the sides of their mouths with a spoon and then feed it to them
– Be mindful of medical issues (don’t offer sugar to a group with a diabetic- if you must, have an alternative dessert/snack for that person).

Preference for familiar foods

We all have our preferences for familiar foods, smells, and textures, this doesn’t end with dementia. It’s important to be assessing their preferences frequently if they are refusing meals often. With cognitive decline, sensory changes can begin to take place, affecting their preferences for certain tastes and smells.

Tips:
– Use hunger stimulating aromas such as onion, garlic, and herbs
– Make homemade bread and homemade chili or soup to illicit an aroma. We know – Buy an apple pie (or food related) candle and light the candle 20 minutes before mealtime.

Fear of choking

As cognitive function declines, individuals may experience difficulties with swallowing coordination and muscle control, increasing the risk of choking incidents. Past experiences of choking or witnessing others choking can further heighten anxiety and fear surrounding meal times.

Tips:
– Involve a dietician or speech-language pathologist to perform a swallowing assessment and education (especially for people who have aspirated before)
– Ensure safe feeding posture
– Offer support and reassurance
-Provide verbal cues to shew food
– Cut food up into small pieces
– Offer pureed foods
– Utilize gravy and sauces to allow food to go down easier

Loss of independence

Individuals may experience decreased autonomy in their ability to perform tasks independently, including activities of daily living such as meal preparation and eating. Dependence on caregivers or family members for assistance with meal-related tasks can lead to feelings of frustration, loss of control, and diminished self-esteem. People with dementia may resist help with eating as a means of asserting their independence and preserving a sense of dignity.

Tips:
– Set up their environment for success (see all tips)
– Provide adaptive eating tools
– Allow person to eat at their own pace
– Do not attempt to assist unless you notice frustration or distress.
– If it looks like they require assistance, ask them if you can help, do not assume –
– Include in meal preparation
– Provide choices of foods/drinks they can have

4. Environmental Barriers

Change in Routine

People with dementia often rely on familiar routines and environments for comfort and reassurance. Disruptions to these routines, such as changes in meal times, dining locations, or meal companions, can cause confusion, anxiety, and distress. When they become confused or restless this may impact their ability to intake food.

Tips:
– Keep meal times and dining areas similar
– Attempt to keep mealtime companions the same
– Provide advanced notice of any changes required and walk them through the new changes.
– Offer support during any transitions

Meal looks unappetizing

People with dementia may rely heavily on visual cues to determine their willingness to eat. Meals that appear unappetizing, bland, or unappealing may fail to stimulate the appetite or encourage interest in eating at all. Additionally, changes in taste perception or sensory sensitivities can further diminish the appeal of unappetizing-looking meals.

Tips:
– Use molds for pureed foods. (Carrot mold for carrots, steak mold for beef etc…)
– Try to serve the meal warm
– If using gravy or sauces put them on when the plate is in front of the person.
– Use fruits and vegetables to add colour to the food
– Use edible flowers or fruits in water to make water look more appealing

Environments that look unappealing

Individuals may become more sensitive to their surroundings, with unpleasant or unclean environments evoking feelings of discomfort, distress, and aversion. Dirty or unsanitary dining areas, utensils, or food preparation spaces can not only diminish the appetite but also pose health risks and concerns. Additionally, individuals with dementia may have heightened sensory perceptions, making them more acutely aware of environmental stimuli such as odors or visual clutter.

Tips:
– Keep dining area clean and hygienic
– Inspect utensils and plates before giving them to the person
– Try to upkeep dining area to make it bright and inviting.
– Dark and deary environments may cause the person to avoid that area.

Noise/Distractions

Individuals may become more sensitive to sensory stimuli, including auditory distractions such as loud noises or conversations. Excessive noise levels in dining environments can create feelings of overwhelm, confusion, and agitation, making it difficult for individuals to focus on eating and enjoy their meals. For example excessive clanking of dishes when clearing the tables may aggravate someone enough to leave the table before they finished their meal. Distractions such as TV, radio noise, or the presence of other individuals engaging in unrelated activities, can further disrupt mealtime routines and detract from the dining experience.

Tips:
– Create a calm environment
– Sit them towards an area with the least amount of distractions (looking out a window, a wall with nice artwork or décor)
– Use one source of auditory stimulation (Music, Television, or conversation)
– Do not sit residents in a dining hall too close together. (Allow them to hear only the conversations at their table)
-Be mindful of clanking dishes together when setting or clearing the dishes.

Colours

The psychology of colour has been shown to have a significant impact on appetite in individuals with dementia. Certain colours have been found to either reduce or stimulate appetite, influencing eating behaviours during meal times. For example, cool colours such as blue and green have a calming effect and are often associated with feelings of relaxation and tranquility. These colours may help individuals with dementia feel more at ease and less stressed during meals, ultimately promoting a more enjoyable dining experience. On the other hand, warm colours such as red, orange, and yellow are known to stimulate appetite and evoke feelings of energy and excitement.

Tips:
– Use a red plate to stimulate appetite
– Use a yellow table cloth
– Use high contrasted colours on the table
– Use calming colours in the environment

People

The presence of other people in the environment can cause fear, anger or suspicion. It’s important we understand that their reality is perceived differently, and when they interact with others it can significantly influence mealtime experiences. In long-term care facilities, the people sitting at the table have an important impact on food intake. If someone becomes annoyed or aggravated at the way someone else eats, they may leave their meal to escape the person. If someone is suspicious of another person, they may not eat because they believe that someone poisoned their food.

Tips:
– Try to ensure that meal companions are familiar and trusted individuals
– Be mindful of sitting people with others that have eating habits and behaviours that could annoy/disgust someone.
– See “Fear and Mistrust” above

lack of access to snacks

If someone with dementia is frequently refusing meals, it’s important that we get some calories into them. If you’re finding it difficult, try to leave snacks that are accessible to them. Ensure they are safe to retrieve, and eat independently. (everyone’s diet is different, below are some general suggestions)

Tips:
– Snacks: Fruit, Granola Bars, Bagged Trail Mix, Muffins, Crackers, Oatmeal Cookies
– Have snacks available in living and sitting areas
– Have water available throughout the living area with easy accessible pouring and cups

5. Social Barriers

Lack of social interaction during meals

Individuals often rely on social cues and companionship to stimulate their appetite and create a positive dining experience. Without the presence of others to engage with or share meals, people with dementia may feel lonely, isolated, and disengaged, which could lead to decreased motivation to eat. Social interactions during meals provide opportunities for communication, connection, and emotional support, which can enhance the meal experience, making eating an activity they look forward too.

Tips:
– Create opportunities for social interaction during meal times
– Encourage family and peers to share a meal
– Use video calls where in-person can’t be done

Too much social interaction during meals

Every person exhibits different behaviours as each persons cognitive decline, and personality are different. There are some cases where someone with dementia may excessively talk or ramble non-sensible language. This can have an impact on their food and hydration intake if they don’t have the ability to stop talking. We should look for signs of distress if someone is presenting signs of restlessness or anxiety while excessively talking.

Tips:
– Limit the number of people present during meals
– Provide opportunities for quiet, one-on-one interactions
– Create designated quiet spaces for individuals to retreat to.
– Use music or television as a distraction
– Use frequent verbal reminders to eat their food.

Loss of Dining Companions

People often rely on the presence of familiar and supportive dining companions to provide companionship, encouragement, and social interaction during meals. The absence of these companions, whether due to changes in living arrangements, the passing of loved ones, or other factors, can lead to feelings of loneliness, isolation, and disengagement. Without the presence of dining companions to share meals with, individuals with dementia may feel less motivated or inclined to eat, leading to decreased appetite or mealtime refusal.

Tips:
– Encourage other familiar companions
– Make meals looks exciting and appetizing
– Introduce music, television or conversation to aid in distraction
– Offer the favourite dinner of the lost mealtime companion as reminisce (be aware this may cause emotional upset).