James H. Rimmer, Ph.D., Director

Trying to make sense of the plethora of information pertaining to the nutritional needs of people with various types of disabilities such as Alzheimer's, autism, spinal cord injury, stroke, AIDS, cerebral palsy, etc. is nothing less than confusing. Because of the lack of good empirical research in the field of nutrition and disability, it is difficult to provide information to a parent who is looking for scientifically sound literature on nutrition and attention deficit hyperactivity disorder (ADHD), or to someone recently diagnosed with multiple sclerosis. No one is quite sure which recommendations work with which disabilities. Much of the information on the Web or in trade magazines stems from personal interviews with one or two people who have a certain disability and have discovered over a short period of time that something seemed to work - less fat consumption, more fluids, additional vitamins, timing of food intake, and so on.

The difficulty in finding good information on nutrition and disability should come as no surprise to anyone who searchers the Web on a fairly regular basis or watches the evening news. We are constantly hearing about new dietary guidelines for the general population. Just last week, for instance, it was reported on the evening news that daily fiber intake for men should increase from 30 to 38 grams. A few weeks ago, women were advised to stop taking estrogen supplements. And the recent controversy between organic versus non-organic foods has been revisited. How in the world do we make sense of any of this? Add a few other health conditions such as spasticity, incontinence, pain, medication-induced fatigue, depression, etc., and you have the daunting task of trying to determine which dietary program works for which conditions!

Researchers, practitioners, journalists, and the general public are struggling to "tease out" study findings that can generalize to most of the population. But this is not an easy task. Much of the problem stems from the fact that we are composed of 30,000 genes that cause each and every one of us to act a little differently, and to some extent, metabolize foods a little differently, depending on various other physiological functions. For example, many people eat poorly and are severely overweight but have good cholesterol levels, while others (including me!) who watch their diet, exercise regularly, and have a desirable body weight have horrible cholesterol levels that must be controlled with medication.

What makes the study of nutrition and disability even more perplexing is the fact that many individuals with disabilities must take various medications to control or mitigate secondary conditions associated with their disability. For example, individuals who experience spasticity must often use muscle relaxants such as Baclofen or Valium to control muscle spasms. Many individuals who have had a stroke are taking Coumadin to "thin" the blood and prevent a recurring stroke. How these and many other drugs that people with disabilities are taking to manage various secondary conditions (i.e., pain, incontinence) interact with food intake is a question that has not been clearly addressed by nutritionist researchers.

Another nutritional issue is that many people with disabilities must rely on someone else to prepare their meals. For example, adults with developmental disabilities who reside in group homes must often eat whatever the direct care staff prepares for them that day. Because of limited food budgets and the need to feed large groups in a time-efficient manner, calorie-dense meals containing high fat, cholesterol and sodium are often served in these settings. This predisposes adults with developmental disabilities to a much greater risk of obesity and various other chronic health conditions. People with severe disabilities who are unable to use their hands or have gastrointestinal disorders also have difficulty maintaining a nutritionally balanced diet because they often must rely on their caregiver or personal assistant for appropriate food intake.

Developing the right nutritional plan for people with various disabilities and secondary conditions requires a multitude of other considerations, some related to the disability itself and others related to the general aspects of good nutrition. Nutrition researchers must become more aware of the needs of people with disabilities and begin to develop a research agenda that addresses the many questions that still exist pertaining to appropriate nutrient intake for people with various types of disabilities and their coexisting secondary conditions.

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