Disabilities and Diet — Beyond the Obvious
By Kate Jackson
Today’s Dietitian
Vol. 7 No. 4 P. 48

Know how to assess your clients with disabilities for hidden nutritional problems.

A man in his mid-30s comes home from his part-time job, gets out of his car and into his wheelchair, and propels himself up the ramp to his apartment. After only several hours of work, his level of fatigue is almost overwhelmingly debilitating. He thinks about making dinner, but he’s just too tired, not really in the mood to bother, and doesn’t have much of an appetite. He eats a piece of cold pizza and pops open a can of beer to wash down the medicines he takes for pain, depression, and fatigue. Although he has received regular care from an array of physicians ever since he was diagnosed with multiple sclerosis (MS), none have talked to him about nutrition.

Healthcare providers who treat individuals with disabilities are frequently so attentive to the disability itself—in this case, MS—that they fail to see its impact on other aspects of health and wellness, such as nutrition. When a disability primarily involves mobility impairment—for example, as caused by MS, Parkinson’s disease, or spinal cord injury—mobility issues and their consequences are likely to get the lion’s share of attention from providers. And if those issues contribute to an inability to cook or eat—for example, if arm weakness makes cooking or eating physically challenging—there’s a good chance that the patient will be referred to appropriate experts for help. Equally insidious, however, are the shadow companions of the diagnosis—conditions that frequently arise in response to disability and its attendant loss and limitations. These most often include pain, fatigue, depression, and, less often, cognitive deficits.

There’s often a more intense focus on the acute issues related to disabilities and less attention to these secondary effects or difficulties, which may be much more subtle or even hidden. To make matters worse, these repercussions of disabilities often work in concert, one feeding the other. Pain, for example, may increase fatigue and fuel depression. And not only do each of these problems—separately and combined—often conspire to sabotage one’s nutritional status, but the medications used to combat these side effects can also have a significant effect on appetite and nutritional status.

It’s not uncommon, says Carlyn R. Kappy, RD, LD, clinical dietitian at the Shepherd Center, a rehabilitation facility in Atlanta, for a patient to have nutritional issues as a result of disabilities. Linda Yerardi, MS, RD, LD, dietitian for the Diabetes Center, Mercy Medical Center in Baltimore, adds, “Each disability carries with it a whole new set of issues and responsibilities for us as clinicians.” Dietitians who see patients with disabilities can go a long way toward bolstering their nutritional profiles by looking at the bigger picture, searching for the signs physicians often fail to consider, and asking questions to recognize hidden problems. By searching for the clues of these sometimes subtle companions of disability and exploring their impact on a client’s nutritional status, RDs can help them counter at least some of the potentially debilitating consequences of their illnesses.

Pain, Fatigue, and Depression
Astute dietitians can profoundly influence the health of clients who lack the energy, stamina, or motivation to plan and prepare meals by recognizing the inertia and the obstacles to healthy eating and devising energy-saving strategies. If the clients’ difficulties are severe, dietitians may want to speak with family caregivers about the need for assistance and work with them to develop strategies with which they can assist their loved ones.

Pain may interfere with cooking and eating by impeding mobility and reducing strength, making it difficult for sufferers to even open jars or use cooking tools, such as can openers. It can limit the motivation to cook and eat and exacerbate fatigue and depression, which may further erode one’s desire to eat. “When you’re in pain, you just don’t want to eat, and on top of that, you’re likely to be getting pain medications that decrease your appetite,” says Kappy. In addition, says Yerardi, pain medications may contribute to nausea, lethargy, and fatigue, so a measure to help one problem creates a new problem. That, says Kappy, is one of the biggest challenges to adequate nutrition for people in pain.

Yerardi suggests that dietitians and providers ask all clients and patients about their appetites. If clients indicate a lack of appetite, delve further. Ask about any changes in medications and about all drugs the patient is taking. If appetite change, nausea, or vomiting follow an adjustment to a client’s medication or the prescription of a new medication, she recommends that dietitians advise clients to discuss these side effects with the prescribing physicians to see whether alternative medications are available, whether dosages can be adjusted, or whether taking the drug with food might reduce the undesirable side effects. Unfortunately, however, a change in medication to limit effects on appetite would typically mean decreasing the dosage, says Kappy, or stopping it entirely, which leaves the patient with the overall pain issue and, in turn, a lack of desire to eat.

When working with clients in pain and with flagging appetites, Kappy has found it effective to enrich their diets with calorically dense nutritional supplements such as Boost or Ensure. When clients can comfortably eat only a small amount, she says, dietitians will want to make as much impact as possible with high-calorie, protein-rich foods.

Depression may influence a client’s appetite and nutritional status in much the same way as pain. It’s a huge issue in people with newly diagnosed disabilities, suggests Sonal A. Hill, MS, RD, LD, clinical/outpatient dietitian at the Drake Center, Inc., a rehabilitation facility in Cincinnati. In addition to offering strategies to help increase appetite and ensure adequate intake, she says, work with the psychology and physician staff for inpatients and refer outpatients to appropriate psychiatric or psychological care. Medications for depression, unlike those for pain, tend to increase appetite, which can lead to overeating, which will also compromise a client’s nutritional well-being. Again, the RD needs to explore how the client’s appetite and eating habits have changed as a result of new or changing medications.

Fatigue, which can be overwhelming for people with disabilities, has a more direct influence than depression on a client’s inclination to cook and eat healthfully. It tends to stop them cold. The trouble is that fatigue is not always a visible handicap and often goes unrecognized by providers. Dietitians can uncover this hidden obstacle by asking all clients about their energy levels and how fatigue influences their desire and ability to eat. Then, they can help clients prepare easy and nutritionally dense meals while reducing their energy expenditures. Kappy advises small, frequent meals and supplements to ensure adequate calorie intake.

Says Jacquelyn Bainbridge, PharmD, associate professor, University of Colorado Health Sciences Center, and a professional advisory board member of the Epilepsy Foundation, “RDs can also help clients with disabilities recognize that they might be stronger at one point in the day than at another” and work with them to capitalize on those more vigorous periods. “You might help them come up with recipe ideas that require minimal cooking or emphasize the use of healthful foods that can be prepared in the microwave,” says Hill, who often sits down with clients to devise cooking schedules that allow them to prepare meals only on particular days and have leftovers that will be easy to serve on other days.

Kappy, who teaches classes for patients and families, has clients who fatigue easily yet want to do things for themselves, and, like Hill, she helps them develop meal plans for foods that can be cooked in the microwave. However, although they want to feel independent, some clients simply will not be able to muster the energy needed to consistently cook for themselves. In those cases, RDs can help by educating and enlisting the resources of family members and personal caregivers. “I’ll have families batch cook and freeze meals in individual packets so that the client can still fix their own meals and retain some independence, pulling these from the freezer and defrosting and cooking them in the microwave,” says Kappy.

“If we think about the equipment that’s available and useful in their homes relative to their abilities,” says Yerardi, “there’s a lot we can do to help them cook for themselves.” Slow cooking, for example, is another boon for people suffering from fatigue because there’s minimal work involved. Says Yerardi, “They can put food in the Crock-Pot in the morning when they have more energy, then by evening they’ll have a meal, and leftovers for the rest of the week.”

Effects of Medications
In addition to the ways in which medications for pain, fatigue, and depression may alter appetite or cause nausea, drugs for these conditions and for the primary disability may also have other side effects that contribute to poor nutrition. “If you’re taking pain medications,” says Bainbridge, “you may end up sleeping too much during the day, and when other people are eating, you’re in bed.” Perhaps more significant, drugs may affect the taste buds, leading to taste perversions. Yerardi asks patients to tell her about the pleasure they get from eating, and if she finds that food no longer appeals to them, she explores whether medications are affecting their sense of taste. If medications can’t be changed, she’ll work with clients to try to restore an interest by reintroducing old favorites. “I’ll ask them what they used to like to eat, what foods pleased them, and when they give me a list, it often turns out that they haven’t tried them lately.” If they’re capable, she urges them to make the effort to try old favorites or asks whether there’s anyone in their family or a caretaker who might be willing to cook their favorite dishes.

Sometimes, says Hill, simple reassurance can help clients when medications that have unsettling side effects cannot be changed. Agrees Bainbridge, “Usually those types of things tend to get better over time, so if you reassure them, often you can hurdle those obstacles.”

Cognitive Disorders
Another common consequence or symptom of a variety of disabilities is cognitive impairment, which in turn can impact an individual’s nutritional status. Says Bainbridge, “People with cognitive deficits and whose cognition is affected by medications may have difficulty understanding what proper nutrition is.” When counseling such clients, says Yerardi, keep instructions and conversation as simple as possible. “Listening is key,” she advises. “Find out how they eat so you can make simple yet effective changes.” When counseling cognitively impaired clients, she adds, limit the amount of information presented at any one time. “Pick two things to cover in a session, and have clients come back more frequently for smaller amounts of time. Instead of a full hour once a month, have them come in for two half-hour sessions during the month.” Adjust your approach if their attention spans are short, she says, meeting more frequently, offering less information, and working toward simpler goals. “If you make the goals too high or too complicated, clients will be unsuccessful, which may start a negative cycle.”

Repetition and the use of written materials are also helpful, adds Kappy, as is involving the family and caregivers in education so they can reinforce your message and bolster the clients’ efforts.

When working with people who have limited literacy or cognitive deficits, agrees Cynthia M. Goody, PhD, RD, LD, assistant professor at the University of Cincinnati, College of Allied Health Sciences, department of nutritional sciences, “use as few directions as possible, with no more than three steps.” Use simple words that will be understood by the client—for example, fat instead of lipid, doctor instead of physician, blood sugar instead of glucose—she advises, and simple sentences that provide directions rather than offer choices. “Break things down into steps and make directions easy to follow.” Look for three- to four-step recipes that use a limited number of ingredients—no more than five, advises Goody. And, since stove or oven preparation may be more difficult, make recipes microwave-friendly. Build on what people know, adding information that they can absorb. To be certain that your clients are learning, show them what you want them to do and ask them to show you what they’ve learned so they can demonstrate their ability to perform the task.

Asking the Right Questions
By listening to clients and probing for evidence of pain, depression, fatigue, and cognitive disorders, dietitians can help clients minimize the hazards disabilities pose to their well-being. Since it’s often difficult for patients to open up about such personal subjects and because many cling to denial, it’s important for clinicians to ask all clients about pain, mood, and energy levels. One way to uncover depression, adds Kappy, is to simply ask about medications the client is taking.

As part of a complete assessment, adds Hill, RDs should explore difficulty chewing or swallowing, ask about grocery shopping habits, and get a 24-hour food recall. Because it’s very important to get a complete and clear picture of what’s going on in the home setting, it’s imperative to ask who does the cooking, who shops, and how much input and involvement the client has in meal planning and preparation.

Suggests Yerardi, ask people how they feel about their condition and about food preparation. Dig further, says Bainbridge, to find out how they feel about food itself and whether they experience strange tastes or unusual sensations when eating. “In the end, your clients are going to be more successful in achieving their goals if you can tailor a program just for them based on their individual parameters.”

Another important component of the assessment, explains Bainbridge, are questions about how much and what kind of exercise the clients get and how fatigued they are at the beginning of the day as opposed to the end of the day. Many people with disabilities, especially those with MS, tend to become increasingly fatigued as the day wears on. With careful planning, you can optimize their efforts. Don’t neglect to ask about quality of sleep, as well as periods of sadness and emotional lability.

Dietitians’ most important task when working with clients with disabilities, and particularly those with pain, fatigue, or depression, says Yerardi, is listening. “If I allow them to express how they feel and I validate their feelings, we can get a lot farther. You can turn someone around in 20 minutes just by validating how they feel and empathizing with them. If they feel listened to, they’re more likely to work with you.”

— Kate Jackson is a staff writer for Today’s Dietitian.

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