One of the most distressing phases during the span of time caring for someone with dementia can be when the person has stopped eating or drinking. As hard as it is to see this is often a natural part of the disease. As a caregiver, it is important to understand some of the causes of this stage of the disease, what it means for the person you care for and some ideas that may help.
Eating and drinking is a complex process that involves the control centre in the brain and strong muscles in the neck and throat. As dementia progresses, it affects these areas, which then expresses as symptoms the carer sees such as coughing or choking, clearing the throat, grimacing when swallowing, exaggerated movements of the mouth or tongue, refusal to swallow or holding food in the mouth or spitting food out.
In the end stages of dementia, when this phase typically develops, the need for food and fluid intake gradually declines over time and the body has already started to adjust. Activity has typically also decreased, so the person does not need to take in as many calories. Understanding this and observing activity levels can help the caregiver see why not as much food or drink is needed. A medical professional can make observations and reassure the carer that dehydration is not a factor or take steps to help.
ANH refers to any method used to provide food and fluids to anyone who is unable to swallow or take in food through the mouth. Usually, ANH is administered through a feeding tube that passes through the nose into the stomach but may also be done through a tube that goes directly into the stomach wall. Fluid is also given intravenously or inserted under the skin subcutaneously. Sometimes ANH is difficult for the person with dementia. Forced feeding at this phase is a point for a debate in the process of care and is not recommended.
Health professionals and caregivers, who understand that this is a normal part of the disease process may decide against ANH. Inserting tubes is distressing to the person with the disease who may tug or pull on the tubes, sometimes pulling them out. Insertion sites can be sore or become infected. The person living with dementia may not understand why they have to be in the hospital for the procedures and could be distressed by unfamiliar surroundings.
Recent studies, in fact, indicate that giving food and fluids by ANH may actually do more harm than good. Giving food through a tube does not stop coughing or choking. Sometimes fluids may get into the lungs causing pneumonia. Being confined to bed reduces mobility, furthering weakness and causing the development of dangerous infections such as bed sores. The latest studies show that one-third of people with advanced dementia who have a feeding tube inserted die within one month.
As a caregiver, the most important concern is that the person with dementia is not suffering. Once we understand that this is a normal part of the disease, it makes it easier to see why the person does not need as much to eat or drink. In most cases, they will not show any sign of being hungry or thirsty but if they do show interest, have an assessment done and get recommendations on what type of alternatives you can give to keep them comfortable.
If the person wants to eat or drink but struggles with swallowing, it is important to have a healthcare professional assesses their ability to swallow, such as a Speech Therapist or General Practitioner. A balanced diet at this stage is not so important, rather offer the person foods and drinks that they appear to be able to swallow and appear to be desirable foods. If they want only sweet things or cold things, accommodate them.
A clinical study completed in Korea compared the swallowing problems of people with late stage Alzheimer’s with those having vascular dementia and found that those with Alzheimer’s had more trouble swallowing fluids, while those with vascular dementia struggled more with swallowing food. Also important is the finding that those with frontotemporal dementia has links to behaviour which affects the food relationship. Some individuals may eat compulsively, eat only sweets or will eat very quickly, shoving food into their mouths until they choke. Knowing these facts are important in discussions regarding how to proceed with caring for these different aspects of the diseases.
First, rule out any physical problems such as mouth sores, a toothache, ill-fitting dentures, infections or medications that could be affecting appetite. Then, try changing the food or drinks offered. Give soft but flavorful food that requires minimal chewing and a variety of temperatures with each meal. Avoid hard foods, foods with stringy textures and mixed foods like cereal. Use smaller utensils and specially designed drinking cups. Have the person sit upright in a comfortable position. Allow extra time as it can take some extra effort but will be worth it as you see them enjoy a meal.
Disclaimer: Please be aware the above article is merely information – not advice. If you need medical advice, please consult your doctor or another healthcare professional.