by Gail Gilman
Encouraging Eating: Advice for At-Home Dementia Caregivers – Part I
Food, eating, and mealtimes are important parts of life. Food gives us life-sustaining nourishment and contributes to good health, eating satisfies our hunger and stimulates our senses, and mealtimes can be important sharing and social times with family and friends. Many of our favorite experiences and memories such as preparing and sharing holiday dinners with family members, celebrating birthdays and other life events with special meals, and getting together with friends for lunch or dinner involve eating and food.
When a person has Alzheimer’s disease (AD) or another type of dementia, the ability to prepare meals and eat independently may diminish, and mealtimes can become challenging, frustrating encounters for both the individual and the caregiver. Often, too, the person with dementia may be experiencing changes, such as decreased appetite, that are part of normal aging. Combined, these changes can lead to malnourishment and dehydration, increasing the risk of infections, poor wound healing, abnormally low blood pressure, and other problems.
Good nutrition cannot always prevent weight loss in people with Alzheimer’s disease, nor will it slow the progression of dementia. However, continuing to eat a healthful diet can promote overall health, improve the person’s ability to cope, help prevent some physical and behavioral problems, and most of all, contribute to higher quality of life. Family members and paid caregivers of people with AD play an important role in both encouraging eating and identifying eating-related problems that could be resolved. Following are some of the eating-related challenges associated with the middle stages of AD and related dementias; suggested mealtime strategies and; tips for at-home caregivers.
Understand the Challenges
As people age, their interest in eating and mealtime enjoyment can change. Some older adults find that their senses of taste or smell decrease, making food seem less appealing than it did in the past. Others eat less because of difficulties chewing or digesting as they get older. Medicines can also affect appetite, and constipation may increase with age or medication use. When a person has AD or other dementia, these problems can become more pronounced, and mood, behavioral, and physical functioning problems may affect eating as the disease progresses.
When the brain is involved, as in dementia, any part of seeing, thinking, or moving can be affected from problems seeing the food clearly to difficulty planning the movement of scooping with a utensil and bringing food to one’s mouth. These problems can take the pleasure out of eating.
It’s important for caregivers to not only understanding the degenerative nature of dementia but also recognizing that dementia varies from person to person. In the early stages of AD, challenges may be limited to the person skipping meals or forgetting to eat or forgetting that he or she has eaten. However, other eating-related difficulties and patterns from not sitting down long enough for meals to spitting out food or refusing to eat can arise in the middle and late stages.
All of a sudden, the person might not eat, but it’s not because he or she is being difficult on purpose. Caregivers need to understand that it’s the same person as before, but because of the complexity of the process of eating, the person may be confused and embarrassed, and thus refuse to participate. It might be easier for the person to withdraw from the activity than to make mistakes.
For people with AD and related dementias, eating-related challenges can result from:
- cognitive issues, such as inability to express one’s needs or desires, initiate or persist with eating, use utensils, remember to eat, and distinguish the food from the plate (visual-perceptual challenges);
- behavioral and psychosocial issues, such as depression, distress, excessive pacing that may increase calorie use, and having difficulty sitting down for meals;
- physical problems, such as inability to hold and use utensils properly or maintain appropriate posture; fatigue; tremors; vision impairment; decreased depth perception; mouth sores; gum disease; dry mouth; poorly fitting or missing dentures; chewing or swallowing problems (dysphagia), and inability to move food inside the mouth;
- environmental issues, such as extraneous noise or confusion, too much visual stimulation, poor lighting, glare, unpleasant odors, and uncomfortable room temperature;
- food and menu-related concerns, such as having too many food choices at one time; difficulty eating the foods that are offered; unappealing food presentation, smells, flavors, or textures; and foods that are different from the individual’s personal, cultural, or religious food preferences;
- chronic diseases that decrease appetite, such as diabetes, intestinal, and cardiac problems;
- decreased appetite from use of certain medications or food-medication interactions;
- caregiver burden due to stress or lack of time, causing the caregiver to feel impatient or find it difficult to ensure that the person eats enough.
Assess the Situation
Assessing the mealtime situation can help caregivers identify and resolve problems and understand what is happening from the care recipient’s perspective. The caregiver should take time to sit back and watch to really observe what is going on when the person attempts to eat. As you’re observing, think about what is happening with all of the senses. Ask yourself which part of the task might be difficult and what the person is feeling. Is the person enjoying the meal, and if not, why not?
When observing the situation, family members and other caregivers can assess:
- the visual aspects of the environment, for example, whether there is poor room lighting, too much glare or too many shadows in the room or on the table, unneeded items or too many food choices on the table, distracting patterns in the place setting, or too little color contrast between the food and the dishes;
- the sounds and noise in the environment whether there are distractions coming from people talking, the television or radio, the refrigerator humming loudly, or dogs barking in the background;
- how the food smells, tastes, and feels;
- how well the person manages the mechanics of eating, from grasping utensils to identifying and picking up food to chewing and swallowing;
- the emotional climate in the room and how the person interacts with and responds to others in the room.
For everyone, nutritional needs shift as a person’s activity level changes. Therefore, it is important for the caregiver to note whether the person is eating and drinking enough or, in the earlier stages of the disease, eating too much. The caregiver should monitor the person’s weight and eating habits to assess the care recipient’s nutritional intake and any nutrition-related issues. Caregivers should pay particular attention to:
- how much and what kinds of foods and fluids the person consumes over the course of each day,
- what times the person tends to be hungry,
- weight changes,
- appetite changes,
- problems with chewing or swallowing,
- how physically active the person is daily.
This information can be shared with the physician to determine whether the person is eating and drinking the right amount, relative to his or her activity level. The physician may recommend keeping a daily food and hydration diary. The information can help identify new physical or medical problems that may not be related to dementia, but cause weight changes. Assess the situation before moving to the next step. It’s important to know how much the person is really eating and how active he or she is before worrying or making changes.
View Mealtimes as Opportunities
Dementia-care experts acknowledge that mealtimes can be stressful for caregivers and care recipients alike, but say that some of the typical challenges can be overcome by viewing eating as an opportunity rather than a task to “get through.”
Mealtimes are one of the most important temporal anchors that people with Alzheimer’s have, marking morning, mid-day, and evening each day. Unfortunately, some caregivers dread the challenge of ‘getting the person to eat,’ and as a result, the experience for everyone can become negative and confrontational. Rather than being akin to a ‘medication time,’ mealtime can be seen as opportunities for a successful experience for the person because it’s an activity that is familiar, is overlearned, and can be modified in many ways.
Mealtimes are opportunities for people with dementia to make choices, to have their identities reinforced, and to be affirmed for past accomplishments through statements such as “Mom, you make the very best biscuits!” or “You taught me to make pie.”
Mealtime provides a time to be with other people. Caregivers often have busy lives, and meals bring people ‘in the moment,’ creating a time to connect with each other. For instance, caregivers can help create a pleasant, social dining environment by talking about the food or reminiscing about family traditions and celebrations.
Experts further recommend integrating people with dementia into the entire mealtime process by encouraging them to help prepare the food, set the table, pull out the chairs, or put the dishes away. Doing so helps the care recipient experience eating in a larger social context and as part of daily activity, rather than as an isolated task. Moreover, participating in the mealtime process helps the person maintain functional skills and feelings of personal control.
Think about the mealtime-related activities the person did in the past and modify them as needed so he or she can continue to contribute to the family. Keep your eye on the process, not the product, because it’s the activity, not the outcome that counts.
Remember to take care of yourself to reduce the stress of caring for others. Whenever you have questions or worries, get help from your health care provider, friends, and family.
Information adapted from article from the National Institute on Aging in the Fearless Caregiver Newsletter, Tuesday, July 16, 2013 – Issue #145.
If you would like more information on “Encouraging Eating – Advice for At-Home Dementia Caregivers” feel free to contact Gail Gilman, Family Life Consultant, M.Ed., C.F.C.S. and Professor Emeritus – University of Minnesota at firstname.lastname@example.org. Be sure to watch for more Family Living Focus™ information in next week’s paper.