People with dementia may experience difficulty eating, swallowing, and drinking as the disease progresses. Although this behavior can occur at any stage of the disease, it tends to be most common in the late stages.
In late-stage dementia, the difficulty in swallowing limits the intake of food and drinks. This time can be difficult and emotional for the family or the caregivers of the patients as they have to figure out how to maintain the eating and drinking of their patients or loved ones.
What causes swallowing problems?
Eating and drinking is a complex procedure involving the brain’s control center and powerful muscles in the neck and throat. As dementia advances, it affects the brain regions that control swallowing. As a result, the patient exhibits symptoms, such as coughing or choking, clearing the throat, grimacing when swallowing, excessive motion of the mouth or tongue, refusal to swallow or keep food in their mouth, and even spitting food out. The caregiver usually notices these symptoms rather quickly.
Another reason for these problems is the weakening of swallowing muscles. Furthermore, due to changes in sensation and sensory perception, some people may feel the consumption of food becomes different and even unpleasant at times.
Having sensitive teeth or a sore mouth can also lead to swallowing problems. In this case, you should get your patient to visit a doctor and dentist as soon as possible for review.
If dementia patients do not eat, will they die of dehydration or starvation?
In late-stage dementia, the individual gradually develops swallowing problems and may stop eating. However, that does not imply that the patient will die due to starvation or dehydration. The food and fluid intake gradually decreases as the disease advances to the end, and the body slowly adjusts to it . The brain regions responsible for basic functions start shutting down at this stage. The disease also seriously affects the brain regions that control hunger and thirst .
The movement and activity of the late-stage dementia patient also declines, and so does the calorie requirement. This observation can help the caregiver understand why not as much food or drink is required. A health care provider can examine the situation and make recommendations .
What is artificial nutrition and hydration (ANH)?
Artificial nutrition and hydration (ANH) refer to methods used to provide food and fluids to individuals who have impaired swallowing and can not eat through the mouth. Generally, ANH administration involves feeding with a tube. The tube either passes from the nose and into the stomach (nasogastric tube) or directly enters the stomach wall via a hole (gastrostomy). Another method is the intravenous (IV) or subcutaneous (SC) administration of fluids. ANH is often difficult for a person with dementia.
Is ANH a good decision?
A majority of health care professionals suggest that because patients with late-stage dementia are near the end of life, they should not be given ANH. It requires hospital admission that can be stressful for the patient, who might also try to pull out the tubes and drips, leading to infection and soreness at the insertion sites.
Some recent studies suggest that ANH can be more harmful than beneficial [3,4]. Giving food and fluids via tube does not stop choking or coughing, reduce chest infections, improve the healing of bedsores (pressure ulcers), improve the quality of life, or prolong life. Furthermore, the food can also get into the lungs, causing aspiration pneumonia. According to another study, the post-insertion mortality rate in late-stage dementia patients was 64.1% with average survival of 56 days. About one-third of people with late-stage dementia died within a year after receiving a feeding tube .
Is the dementia patient suffering?
As a caregiver, you might be concerned if your patient or loved one is suffering. Caregivers or family members are often unaware of why their patients do not want to eat. Understanding that these eating problems are a normal part of the disease may help you feel assured that they are not suffering . Most of the patients will not exhibit signs of hunger or thirst, but if they do, seek medical advice and get recommendations on what alternatives you can give in order to keep them comfortable.
Should you continue giving food and fluids through the mouth?
Yes. You should encourage your patient who can eat and drink, even if it is only a spoonful or sips of drink. Also, you should help them have fluids and foods that are as safe as possible. Examples would be soups, purees, etc.
Some helpful ideas for caregivers
If the patients want to eat or drink, despite having difficulty with swallowing, you can give them small amounts of food and drinks at a consistency that is manageable and safe. Always seek the advice of a healthcare professional, such as a general practitioner or speech therapist, who will assess the patient and suggest the most suitable consistency.
You should rule out physical problems that might make swallowing difficult, such as mouth sores, ill-fitting dentures, infections, or toothache. Changing the food or drinks may help. Consider soft and flavored food that requires minimal chewing, and avoid solid and mixed foods (such as cereals).
A balanced diet is not necessary at this point. Instead, focus on giving the patients food they desire and enjoy, or that they can swallow. A dietitian, however, can recommend nutrient supplements.
Before giving food or fluids, you should ensure that the person is in a good and comfortable position. Your patient should be fully awake and as upright as possible.
Lastly, give your patient some extra time and effort to make them enjoy the meal as much as possible.
 Kuo, S., Rhodes, R.L., Mitchell, S.L., Mor, V. and Teno, J.M., 2009. Natural history of feeding-tube use in nursing home residents with advanced dementia. Journal of the American Medical Directors Association, 10(4), pp.264-270.