First of two parts
Anyone who has worked with mid- and late-stage dementia residents in long-term care can describe mealtime challenges they’ve encountered. Refusing to eat, rejecting food, becoming too distracted to eat, not being able to use utensils properly, not recognizing food, and difficulty chewing are among the dining difficulties commonly observed.
These challenges can be both perplexing and frustrating for frontline caregivers as they try to encourage residents to eat and drink. For the person with dementia, though, inadequate food and fluid intake can mean much more—malnourishment, dehydration, and unintended weight loss that can lead to a downward spiral in overall health and quality of life.
Malnourishment can increase the likelihood of infections, poor wound healing, pressure sores, immune deficiency, anemia, and abnormally low blood pressure (hypotension). Dehydration can also lead to problems such as constipation, urinary tract infections, renal disease, pneumonia, hypotension, and delirium. In addition, lack of adequate nutrition and fluids can negatively impact the person’s mood, behavior, and physical functioning as dementia progresses.
Research shows that as many as 85 percent of nursing home residents are undernourished, and as many as 60 percent of residents suffer from dehydration. According to the American Dietetic Association (ADA), unintended weight loss also is common in long-term care (LTC), with 10 percent of residents losing 5 percent of their body weight within 30 days and 10 percent of residents losing 10 percent of their body weight within 180 days (ADA, 2005).
As with other LTC residents, people with Alzheimer’s disease and other dementias are at risk for a variety of eating problems. Diminished senses of taste and smell, difficulties chewing and digesting food, and other changes frequently seen in older adults may become more pronounced in people with dementia. Increased cognitive impairment, swallowing problems, and other difficulties in the later stages of dementia also can affect a person’s ability to consume adequate food and fluids, and to maintain a healthy weight (see box).
In an Alzheimer’s Association-sponsored study of 407 people with dementia at 35 residential care/assisted living facilities and 10 nursing homes in four States, Reed et al. (2005) observed low food intake (defined in the study as eating 75 percent or less of a meal) in 54 percent of residents and low fluid intake (defined as drinking 8 fluid ounces or less at a meal) in 51 percent of residents. The researchers also found that nursing home residents with dementia were significantly more likely to have low food and fluid intake, compared with those living in residential care or assisted living facilities.
While they may acknowledge these problems, nursing home and assisted living facility administrators and frontline caregivers alike often are stymied by the many obstacles to providing adequate nourishment and fluids to residents in the later stages of dementia. These challenges, they say, range from individual residents’ refusal to eat to staffing issues to the need to comply with regulations.
Some dementia-care experts suggest that changing LTC facilities’ caregiving “cultures” and dining milieus can improve eating behaviors, make mealtimes easier, and prevent unintended weight loss and health problems. The keys, they say, are developing strong, positive relationships with individual residents and retooling dining approaches to better address individuals’ needs.
“Mealtime is a time when people have the greatest opportunity to do something that is familiar, comfortable, and noninvasive, and it should be a chance for them to have real success,” says Anna Ortigara, RN, MS, vice president of the Campaign for Culture Change at Life Services Network, a 450-member association of senior-care providers in Illinois. “We need to make sure we are setting up situations in which residents can do as much as possible for themselves, and we need to pay attention to steps they can take to be successful.”
Although the physical and social dining environments are critical, building positive relationships with residents and their families and understanding individuals’ needs and preferences are paramount, says dementia-care expert Geri Richards Hall, PhD, ARNP, CS, FAAN, clinical professor at the University of Iowa College of Nursing and volunteer professional consultant to the online support group of the Alzheimer’s Disease Research Center (ADRC) at Washington University in St. Louis.
“The cardinal rule is ‘Know thy patient,’” Dr. Hall says. “Food represents quality of life, and for many people with dementia in long-term care, it represents one of the few things they can enjoy. Therefore, it’s important that they have what they want and need. Even people with end-stage dementia tell you what they want, either verbally or non-verbally.”
Dr. Hall and other experts say that caregivers should work with families and get to know the resident’s physical and cognitive status as well as the changes that are occurring as the disease progresses. Getting to know the individual helps the caregiver find ways to support the resident in managing each step of the mealtime experience.
“When people with dementia are not able to manage dining well, some may get frustrated or upset or very anxious, while others may withdraw,” says Ortigara, who has worked in dementia care and training since the early 1980s and was director of Residential Care Services at the Rush Alzheimer’s Disease Center (ADC) in Chicago. “They may be telling us that they simply can’t manage this situation. As the disease advances, people are less and less able to communicate verbally and will communicate more and more through their behaviors.”
“We have to think about how we as the staff are communicating with the person,” Ortigara continues. “For example, are we friendly, warm, easygoing, and non-demanding? Are we sending clear messages? Are we giving them good, orienting information to the setting and task? Are we looking directly at the person, making sure the person sees us and calling him or her by name? Are we speaking slowly and asking simple, very clear, one-choice questions like ‘Mary, would you like some more milk?’”
Just as they get to know LTC residents as people and understand their ability to manage the mechanics of eating, direct caregivers should become familiar with the individual’s food preferences. Learning what the person will and won’t eat can take time and patience, and is a process of trial and error. It can also require being open to new strategies that help ensure adequate calorie intake and permitting residents in the later stages of dementia to eat what they want, not what the staff thinks they should have.
Jan Dougherty, RN, MS, Dementia Program director at Hospice of the Valley in Phoenix, Arizona, asserts that eating and mealtimes should be resident-directed, regardless of the stage of dementia. She works closely with nursing facilities in the Phoenix region and has written standards of care for nursing homes that serve people with moderate to advanced dementia.
“We all have these myths about what people should eat, how they should eat, and when they should eat,” she says. “Even profoundly demented people can still direct their care based on their behavior. When they’re readily accepting ice cream, they’re directing us to give them more ice cream. When they’re spitting out their peas, they’re saying ‘No more peas.’ . . . We need to customize dining for every person because we all have different needs and different desires.”
The ADA echoes this sentiment in its position paper on liberalization of the diet prescription in long-term care. “Dementia syndromes may impair self-feeding, alter appetite, and increase energy needs. Nutrition restrictions may make food less appetizing, resulting in diminished intake and weight loss,” the position paper states. “Overly restrictive diets, such as those low in cholesterol/fat, salt, and sugar, may take much of the enjoyment out of eating. . . . The use of a more liberalized approach produces several benefits, including better intake, lower incidence of unintended weight loss, more consistent blood glucose levels, and, perhaps most important, quality of life for the residents.”
Nancy Lerner, RN, BSN, MSN, CDONA/LTC, director of nursing at Copper Ridge, a nonprofit dementia-care facility in Sykesville, Maryland, that is affiliated with the Johns Hopkins University ADC, suggests that LTC facilities adopt a variety of strategies to encourage residents with mid- to late-stage dementia to eat. Strategies used at Copper Ridge include, for example, baking bread and cookies daily to stimulate residents’ sense of smell and appetites, and offering sharply flavored foods, such as marinara sauce over eggs.
The Copper Ridge staff also offers calorie-rich foods like “super cookies” and enhances most foods served with ingredients such as extra protein, fruit, dry milk, cream, half and half, ice cream, butter, peanut butter, and brown sugar.
“We basically add value to whatever foods they’re eating,” notes Lerner. “And, if we can give people a simple carbohydrate and they’ll eat it, we’ll let them eat it because they need the extra calories.”
In addition to encouraging people to eat what they want, some LTC facilities have helped maintain residents’ weight by making food available to residents when they want to eat instead of only at mealtimes. In this way, they maximize food intake whenever the person is receptive to eating. Vermillion Cliffs, a 46-bed Alzheimer’s and dementia care skilled nursing unit at the nonprofit Beatitudes Campus continuing care retirement community in Phoenix, Arizona, has adopted an innovative approach to eating and mealtimes, achieving positive outcomes for both residents and the staff.
At Vermillion Cliffs, the staff makes high-calorie, protein-dense foods available to residents around the clock, and food is viewed as an important part of the caregiving culture. For example, rather than waking everyone to get ready for breakfast at a scheduled time, breakfast is served from 4:30 a.m. through mid-morning, so residents can eat when ready. Breakfast rolls, bran muffins, yogurt, fruit, sandwiches, and other finger foods are available 24/7 from a food cart in a central area, and all staff, from nurses and nursing assistants to activities staff and housekeepers, offer residents food throughout the day.
The positive outcomes are significant. Vermillion Cliffs Unit Director Tena Alonzo, MA, reports that 73 percent of the residents maintain a stable weight or gain weight, and less than 5 percent lose significant weight, compared with about 50 percent who lost significant weight in the past. Other outcomes include decreased “sundowning” syndrome, fewer behavioral challenges, improved sleep, decreased use of sleeping pills, and almost no staff turnover.
Alonzo attributes these outcomes to a shift in the facility’s caregiving culture and extensive, ongoing training that began 8 years ago. She says they wanted to make the dining experience more pleasurable and easier, despite the many challenges of the disease.
“We stopped looking at what was a balanced meal and started giving people food that they want, when they want it. We’re taking our cues from the people we serve,” Alonzo says.
Dougherty, who has worked with the Vermillion Cliffs dementia care team for several years, adds that the unit’s staff caregivers spend a lot of time getting to know their residents and respect what individuals are telling them behaviorally.
“The whole philosophy is that it’s not about us—it’s about this person. The team is there to support the individual, and they work with the family to help them understand that this is a quality-of-life issue,” she says.
Improving residents’ eating behaviors and preventing weight loss also involves a strong commitment to the staff, dementia-care experts suggest. Consistent assignments to individual residents have the potential to improve eating behaviors because caregivers are able to build relationships with the residents and get to know their behaviors and food preferences. Likewise, staff who assist with eating should be given data about their assigned residents’ weight and other health factors, and empowered to use techniques that work for individuals, experts say.
Consistent assignments and empowering frontline caregivers can benefit residents and dramatically reduce staff turnover. Ongoing, interdisciplinary staff training can also make a difference by helping caregivers learn about behavioral interventions and understand nutrition risks, dietary needs, and other issues during the various stages of AD and other dementias.
“Each organization has to create a work environment in which staff turnover is minimized,” Ortigara says. “Consistent assignments and reducing staff rotation can eliminate many eating difficulties because the staff really know the person—for example, that you’ve got to go slower when feeding Bill, that John doesn’t like vegetables, that if you give Mary a little bit of sweets first she eats better. It’s not about one strategy, it’s about relationships.”
Alonzo believes that Vermillion Cliffs’ positive resident outcomes and near-zero staff turnover have resulted in part from empowering certified nursing assistants (CNAs). “We give the CNAs what they need to make the resident feel comfortable. It may or may not have to do with eating, but it often does because that’s central to keeping people comfortable.”
Dementia-care experts acknowledge that CNAs and other caregivers often feel restricted in how, what, and when they can serve residents because of nursing home regulations or physicians’ therapeutic diet prescriptions. However, they point out that many of the regulations were written in the 1970s and 1980s, when there were fewer dementia residents in long-term care. Today, caregivers are beginning to understand the need to be creative to ensure that nutritional and quality-of-life needs are met.
The ADA’s position paper states, “Nutrition care for the resident is both driven and hindered by the regulatory environment. On one hand, regulations speak of physician-prescribed therapeutic diets, and, on the other, they speak of resident rights. Both regulations and ethics demand that facilities meet the nutritional needs of residents while maintaining their dignity and quality of life.”
“Many facilities are afraid of being cited for breaking the rules,” comments Geri Richards Hall. “If you’re nearing the end of your life and you have end-stage dementia, and you want to eat chocolate cookies, does broccoli really make sense?”
She recommends working with physicians to plan feeding approaches to meet the individual’s needs and desires while ensuring quality of care and heeding the regulations.
Lerner says that the staff at Copper Ridge is encouraged to use creative feeding techniques and to exchange problem-solving ideas with their peers. “Generally, people have to be less afraid of assessing residents’ individual needs, taking the time to figure out what can get them to eat, and then care-planning those strategies,” says Lerner. “If you give aides the freedom to experiment, to talk together, and to try something different, then they know it’s OK if the end result is getting someone to eat.”
Common Mealtime and Eating-Related Challenges
Many factors and barriers influence food and fluid intake among LTC residents with AD and related dementias. These factors, which evolve during the course of the disease include, for example:
Ensuring that LTC residents consume adequate food and fluid can also require assessing—and often changing—the dining room experience. As stated in the Alzheimer’s Association’s Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes (2005), “A positive social environment can promote the ability of residents to eat and drink. . . . Residents should have a pleasant, familiar dining environment free of distractions to maximize their ability to eat and drink.”
Ortigara recommends that LTC administrators and caregivers begin to assess the dining experience in their facilities by asking some basic questions such as:
LTC administrators and caregivers should try to make mealtimes easier and less confusing for residents. For example, depending on the resident’s stage of dementia, facilities might limit menu choices, have residents make menu choices before coming to the dining room, serve meals as soon as individual residents are seated, serve only one course or food at a time, offer finger foods, and give residents adequate time to eat.
To promote independent eating, residents should be cued both verbally and visually. The caregiver can offer one-step instructions, remind the resident to chew and swallow, and demonstrate eating tasks, for instance. Simple steps, such as pre-opening milk cartons, not wrapping silverware in napkins, and cutting foods into bite-sized pieces can also help.
Environmental changes can also help maximize residents’ ability to eat and drink. These changes can include minimizing movement of people around the room, eliminating distracting noise such as overhead paging and music, improving lighting, using boldly colored plates and cups, using placemats to define the resident’s eating space, not placing unneeded items such as garnishes on plates, and removing used or unneeded utensils and other items from tables, for instance.
Some facilities have also created smaller, non-institutional dining rooms to reduce distractions and seat residents according to their eating abilities and dining needs. For example, at Vermillion Cliffs, residents who are easily distracted dine with three or four others in a small dining room or in other locations, sometimes with their families. At Copper Ridge, groups of 20 assisted-living residents with similar capabilities dine in kitchen areas in their “houses.”
Ortigara recommends that administrators observe dining from the residents’ perspective. “Every administrator should eat one meal in the dining room where people with dementia are eating, and they should be served exactly like the residents are served to understand what it’s like to eat meals in this room,” she suggests.
Dougherty agrees, concluding that, “We need to get administrators and caregivers to think about how to make the best dining experience we can for people with dementia and to really focus on the dining experience that’s right for this person. We can’t have a one-size-fits-all model.”
Next Issue: Caregiver Tips for Dining at Home
Photos courtesy of the U.S. Department of Agriculture.