Encouraging eating: Advice for at-home dementia caregiversDecember 1, 2006
Second of two parts
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—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, for example—involve eating and food.
When a person has Alzheimer’s disease or another type of dementia, though, 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. This article discusses some of the eating-related challenges associated with the middle stages of AD and related dementias, and suggests 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,” explains Sue Coppola, MS, OTR/L, BCG, clinical associate professor of occupational therapy and core interdisciplinary team member with the Program on Aging at the University of North Carolina at Chapel Hill.
Coppola and other dementia-care experts stress the value of caregivers 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,” says occupational therapist Carol Bowlby Sifton, BScOT, founding editor of Alzheimer’s Care Quarterly and a care and staff training consultant at King’s Regional Rehabilitation Centre in Nova Scotia. “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—really observe—what is going on when the person attempts to eat,” Coppola suggests. “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,” Coppola says. “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,” Coppola says. “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,” adds Coppola. “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,” says Cynthia Epstein, ACSW, a clinical social worker at the New York University Silberstein Aging and Dementia Research Center.
Caregivers can use a variety of strategies to promote independence during mealtimes. For example, if the person lives alone, the caregiver might call and remind the person to eat a meal, write down simple step-by-step directions about how to prepare a particular meal, or organize the kitchen so that items needed for a simple meal are in view.
If the care recipient has difficulty using utensils, replace some foods with finger foods such as small sandwiches, cheese, hard-boiled eggs, and fresh fruits and vegetables. Simple adaptive eating tools also can help some people remain independent and maintain a sense of personal control while dining. These include items such as plates with large rims, cups with lids and wide bases, flexible straws, utensils with large or built-up handles, and non-slip placemats or suction cups to keep dishes from moving on the table. Adaptive tools that look familiar can help trigger the person’s memory for eating.
In addition, visual, verbal, sensory, and physical cuing can promote independence, especially when the cues are based on lifelong habits. Coppola recommends starting with visual cuing, which can be as simple as eating with the person as a reminder that it is mealtime. Place utensils in the positions in which they will be used. Dishes that are different colors from the food help the person distinguish the food.
Clear, easy-to-understand verbal prompting may also be needed. Depending on the person’s language ability, this may mean giving very specific, step-by-step directions, or it may mean offering simple choices, such as “Do you want peaches or apples?” or “Would you like cream in your coffee?” Verbal prompts, such as “Do you think the beans have enough salt?,” can focus the person’s attention on the food.
Sensory cues, especially those involving smell, can let the person know it is time to eat. Sifton notes that nothing ‘says’ mealtime and triggers the appetite more than aroma of soup or stew simmering on the stove or something baking in the oven. Even the smell of toast can help.
People with more advanced dementia may also need physical prompting to initiate the process of eating or to continue eating. For example, the caregiver might place a finger or hand under the person’s grasped hand on the fork and guide it to the mouth. After getting help with initiating eating, the person may then take over.
However, Sifton notes, while physical cuing often can help, caregivers should not step in too soon. Doing so can diminish the care recipient’s sense of personal control and independence. “When the person starts to have difficulty doing things, it’s often too easy for the caregiver to take over, rather than finding ways to involve the person,” she says.
Maintain Familiar Routines
Change can be difficult for a person with AD, so preserving familiar routines and rituals, and respecting lifelong preferences and eating habits can make mealtimes easier. Many caregivers have found that maintaining a sense of normality adds to mealtime pleasure, provides reassurance, helps maintain the person’s dignity, increases food consumption, and eases the tension that often arises during mealtimes. “Follow the person’s normal routine to the extent that you can,” suggests Epstein. “That makes the person more relaxed, and because it’s predictable, he or she will feel more in control knowing what’s going on.”
Routines and rituals provide important cues that it is time to eat and trigger the familiar actions involved in feeding oneself. Experts suggest a variety of ways to maintain lifelong habits and routines:
- Identify and respect personal, cultural, and religious food preferences, such as eating tortillas instead of bread, avoiding pork or milk products, and not liking certain kinds of vegetables.
- If the person has always eaten meals at specific times, continue to serve meals at those times.
- Serve meals in a consistent, familiar place and way whenever possible.
- If the family has always said a prayer of thanks before meals, continue to say the prayer.
- Avoid introducing unfamiliar routines, such as serving breakfast to a person who has never routinely eaten breakfast.
In time, familiar routines, rituals, and food choices may need to be adapted to meet the day-to-day needs of the person with dementia and to address changes that occur as the disease progresses. For example, a family custom of serving appetizers before dinner can be preserved, but higher-calorie items might be offered to help maintain the person’s weight. Likewise, if the family typically has cocktails before dinner, non-alcoholic drinks can be served to avoid the appetite-suppressing effect of alcohol or other possible safety problems associated with alcohol consumption.
If care is being provided by an aide or other paid professional, the family should educate the caregiver about food preferences and familiar eating routines and rituals. “A baseline for providing good care is knowing the person you’re caring for, but paid caregivers very often are at a loss,” Epstein says. “They don’t know the person unless they’ve worked with him or her for a long time, and family members often don’t know what they need to tell the paid caregiver. This can be very frustrating for everyone.”
“Family members definitely need to communicate with the caregiver about what the person likes to eat, the person’s style of eating, and whether he or she prefers that the caregiver sit down to eat with the person or just serve the food,” Epstein adds. “In this way, the family can empower and direct the caregiver and minimize frustration, which benefits everyone involved.”
Tips for Making Mealtimes Easier and More Enjoyable
- View mealtimes as opportunities for social interaction and success for yourself and the person with dementia. A warm and happy tone of voice can set the mood.
- Try to make mealtimes calm, comfortable, and reassuring. Be patient, avoid rushing through meals, and give the person enough time to finish the meal.
- Be sensitive to possible frustration, confusion, and anxiety during mealtimes and look for ways to reduce these feelings.
- Maintain familiar routines and rituals, but be flexible and adapt to the person’s changing needs.
- Minimize distractions during mealtimes. For example, turn off the television or radio, and eliminate unneeded items from the table.
- Offer appealing foods that have familiar flavors, varied textures, and different colors, and give the person opportunities to make choices.
- Make nutritious finger foods and nutrient-rich homemade shakes or shake products (unless the person is lactose intolerant) available throughout the day.
- In the earlier stages of dementia, be aware of the possibility of overeating. If this occurs, provide a balanced diet, limit snacks, and offer engaging activities as alternatives to eating.
- If the person is on a reduced-sodium or sugar-restricted diet because of hypertension, diabetes, or another medical condition, keep foods with high salt or sugar content out of reach or in a locked cabinet.
- Help the person drink plenty of fluids throughout the day—dehydration can lead to problems such as increased constipation, confusion, and dizziness.
- Use adaptive eating tools as needed. Talk with an occupational therapist about which tools might be helpful, as well as other strategies to make eating and mealtime routines more successful.
- Identify and work to resolve issues such as depression, forgetting to wear glasses or hearing aids, wearing poorly fitting dentures, and use of appetite-suppressing medications, which may impair the person’s ability or desire to eat.
- Maintain routine dental checkups and daily oral health care.
- Be alert to and address potential safety issues, such as the person forgetting to turn off the stove after cooking and the increased risk of choking because of chewing and swallowing problems that may arise as the disease progresses.
- And finally: 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.
For More Information
Bowlby Sifton, C. (2004). Navigating the Alzheimer’s Journey: A Compass for Caregiving. Baltimore: Health Professions Press, Inc.
Hellen, C. R. (2002). ‘Doing Lunch’: A Proposal for a Functional Well-Being Assessment. Alzheimer’s Care Quarterly, 3(4);302-315.
Petersen, R. (Ed.) (2006). Mayo Clinic Guide to Alzheimer’s Disease. Rochester, MN: Mayo Clinic.
U.S. Department of Health and Human Services and U.S. Department of Agriculture. (2005). Dietary Guidelines for Americans 2005, 6th Edition.
More About Good Nutrition
Unless they have dietary restrictions because of hypertension, diabetes, or other reasons, most people with early and mid-stage dementia need not eat a special diet. Rather, it is best to encourage them to eat a variety of foods that are rich in vitamins, minerals, protein, other nutrients, and fiber, and to consume adequate calories. Sources of reliable information about good nutrition include:
Age Pages: Good Nutrition: It’s a Way of Life and Dietary Supplements: More Is Not Always Better, available from the NIA at: www.nia.nih.gov/health
How to Understand and Use the Nutrition Facts Label, available from the U.S. Food and Drug Administration.
Finding Your Way to a Healthier You, available from the U.S. Department of Agriculture and U.S. Department of Health and Human Services.
More About Weight Loss and Dementia
From the earliest stages of AD, many people tend to lose weight, despite the best efforts of caregivers to provide high-calorie, nutrient-rich meals and snacks, and to remind the person to eat regularly. Some people with AD also advance to a condition known as cachexia, a general wasting effect that involves unexplained weight loss, as well as fatigue, weakness, and significant loss of appetite.
The underlying cause—or causes—of weight loss and cachexia associated with AD remain unclear, however. Some scientists have suggested that abnormally high daily calorie use (from pacing, for example), combined with lower-than-normal daily calorie intake, results in the drop in body mass. Others hypothesize that weight loss results from loss of the initiative to eat; loss of the sense of smell; or atrophy or other changes in the brain that alter the person’s metabolism, appetite, or behavior.
While decreased body mass is a well-accepted part of AD, recent studies funded by the NIA also suggest that unexplained weight loss actually precedes the measurable cognitive impairment and other signs of the disease—often by years. For example:
- As part of the Honolulu-Asia Aging Study, NIA-funded researchers at the Pacific Health Research Institute in Hawaii looked at weight changes and the onset of dementia in 1,890 Japanese-American men ages 77 to 98 years over a 32-year time span. During the first 26 years, those with and without dementia did not differ with respect to baseline weight or change in weight. In the succeeding 6 years, though, those who were eventually diagnosed with AD or vascular dementia lost more weight yearly than did those who were not diagnosed with the disease. (Stewart et al., 2005)
- Investigators at the Rush Alzheimer’s Disease Center in Chicago found an association between decreased body mass index (BMI) and the risk of AD within a group of older Catholic clergy participating in the Religious Orders Study. Those who lost approximately one unit of BMI per year had a 35 percent greater chance of developing AD than those with no change in BMI over the course of the study, and the greater the loss of BMI, the greater the chance of developing the disease. (Buchman et al., 2005)
- Using data from the Memory and Aging Project, researchers at the Washington University Alzheimer’s Disease Research Center in St. Louis followed a group of 449 older adults over a 6-year period, during which 125 of the participants developed dementia. On average, those who did and did not develop dementia lost weight at the same rate for the first several years of the study. However, a year before the early signs of dementia appeared, those who eventually developed AD had lost twice as much weight as those who did not develop AD. (Johnson et al., 2006)
- In a retrospective review of medical records, scientists at the Mayo Clinic and the University of California San Diego compared the weights and heights of 481 people who were diagnosed with dementia with those of sex-matched controls without dementia. They found that by 11 to 20 years before the disease onset, women with primary dementia on average weighed nearly 6 pounds less than the female controls, and by the year of diagnosis weighed more than 13 pounds less than the controls. Among men, during the year of diagnosis, those with dementia weighed 5 pounds less than the controls, although the difference was not significant then or at earlier time points. (Knopman et al., 2006).
“Unexplained weight loss is well-recognized as part of the clinical constellation of Alzheimer’s disease symptoms. Now, a growing body of evidence suggests that weight loss can actually begin before the signs of cognitive dysfunction appear,” says Marcelle Morrison-Bogorad, PhD, director of the NIA’s Neuroscience and Neuropsychology of Aging Program. “The jury is still out on whether weight loss is part of or a result of the Alzheimer’s disease process, but these findings do suggest that even subtle decreases in weight might be a clinical predictor of AD.”
Buchman, A.S. et al. (2005). Change in Body Mass Index and Risk of Incident Alzheimer Disease. Neurology, 65(6);892-7.
Johnson, D.K. et al. (2006). Accelerated Weight Loss May Precede Diagnosis in Alzheimer Disease. Archives of Neurology, 63(9):1312-7.
Knopman, D.S. et al. (2006). Incident Dementia in Women Preceded by Weight Loss by at Least a Decade (presented at the 10th International Conference on Alzheimer’s Disease and Related Disorders; Abstract P1-207). Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, 2(3);S156-S157.
Stewart, R. et al. (2005). 32-Year Prospective Study of Change in Body Weight and Incident Dementia: The Honolulu-Asia Aging Study. Archives of Neurology, 62(1):55-60.
Page last updated: June 26, 2013