Late Stage Dementia: Not Eating

Dementia is a progressive, incurable disease affecting the brain and therefore impacting many body processes. As it worsens, increased help with activities of daily living (ADLs), such as dressing, toileting, and eating, is needed. 

Difficulty with eating typically occurs during late stage dementia (1). In this stage it is especially important to pay attention to food intake. This article will describe suggestions to increase nutritional intake and guidance for when interventions are no longer effective. 

Strategies for Not Eating

People with dementia tend to respond best using person-centered care, which takes into consideration dignity, respect, and choice (2). While interventions to promote nutritional intake are not always effective there are some practices that may improve not eating in late stage dementia.

Familiar Dining Routine

Serve meals at a similar schedule each day. Take into consideration common times of agitation and overall mood patterns when developing this schedule. Keep seating arrangements routine.

Use Visual Contrast

Changes in visual perception commonly occur in dementia, which can lead to decreased food intake (3). Since those with dementia have decreased sense of contrast and color differentiation, serving foods on contrasting colored dishes may increase intake. 

Maintain Oral Health

Those with dementia should attend routine dental appointments, as their condition will allow, to maintain their dentition and prevent infections or other oral complications. 

Proper oral care is important to maintain chewing ability. If difficulties chewing or swallowing occur, an altered texture diet may be necessary. It is not uncommon for those with late stage dementia to forget the process of chewing and swallowing food and fluids. 

Home-like Environment 

Proving meals in a home-like environment can assist in reducing agitation and triggering long term memories of eating processes, thus promoting intake. 

• Provide socialization
• Serve family style
• Allow plenty of time for eating 
• Play soft music 
• Ensure adequate lighting
• Engage the sense of smell with food aromas 
• Reduce distractions
• Keep snacks visible throughout the day 

Honor Preferences 

Honoring food preferences, even if they are different than before dementia, can maximize intake. Offer culturally appropriate foods. If they are not eating the meal served then offer an alternative choice. 

Offer Nutrient Dense Foods 

When intake diminishes, every bite counts. Adding extra calories to commonly eaten foods is a way of boosting nutritional intake. Add extra butter, gravies, sauces, powdered milk, cheese, sour cream, or other high calorie condiments to food items. 

As we age we lose our sense of taste. Sweet is typically the last to go, which is why it is common for the elderly to gravitate towards sweet food items, especially with dementia. Sprinkling sugar over foods, even savory ones, can add additional calories and promote intake of less likely to be consumed foods. 

Nutritional Supplements

A food first approach is best, however during late stage dementia fluids may be better accepted.  Nutritional supplement drinks can be an effective way to add extra calories. Ideally provide between meals to avoid filling up on fluids at meals instead of foods.

There are many brands available in grocery stores, drug stores, and online. Most have nutritionally comparable products. Some individuals with dementia may prefer a homemade smoothie-type drink instead of commercial supplements. 

Provide Feeding Assistance

Difficulty with self feeding is a common occurrence in late stage dementia, which can therefore lead to not eating. Utilize finger foods, as utensils become more difficult, to promote independence. This can be especially beneficial if the individual is resistant to assistance. 

Some may benefit from using adaptive eating equipment. There are utensils, cups, etc available that have been adapted to make self feeding easier. 

Some with late stage dementia may just need cueing and encouragement throughout their meals in order to eat. Others may require someone to actually feed them because they have forgotten the eating process altogether. 

Hydration

Thirst is often not felt in late stage dementia, so promoting hydration is important. Keeping fluids visible and offering preferred fluids frequently throughout the day can assist with decreasing risk for dehydration, although this may be unavoidable in some eventually.

Artificial Nutrition

Many families question pursuing alternative means of nutrition when eating becomes difficult or inadequate in late stage dementia. This is commonly motivated by a fear that their loved one will be feeling severe hunger and/or thirst. 

Evidence shows that use of feeding tubes are not effective at prolonging life, improving healing, or preventing aspiration during end stage dementia (4).

Despite this, some caretakers continue to opt for feeding tubes in the elderly more as a moral obligation of providing nutrition vs. using science to make this difficult decision.

Palliative Care

With dementia being incurable, as it progresses goals shift to quality of life, dignity, and comfort (5).  When those with late stage dementia are not eating, advanced directives are particularly important. 

With tube feedings not showing any increase in quality or length of life, many opt for comfort measures. Comfort care can be individualized based on preferences. 

Read End of Life Eating Habits to learn more.

Final Thoughts

With dementia affecting more than 50 million people worldwide (6), it is important to understand the tools available to assist with not eating during late stage dementia. Advance directives come into play when these interventions are no longer effective. 

Read more about the best foods for dementia patients to eat.