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For people with Down syndrome, family members, caregivers and professionals.

Weight Management in Adults with Down Syndrome

October 2021 | Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Weight management can be challenging. It is likely that part of the reason is that there are factors for which our understanding is limited. While a great deal has been learned, more research is being done to improve our understanding and to learn how that knowledge can be used for improved weight management through exercise, diet, supplements, and/or medications. 

Factors that can affect weight

Hormones. There are several hormones that are involved in hunger and satiety (feeling full). One of them is leptin. A simplified explanation of leptin is as weight increases more leptin is made, which contributes to reduced food intake. In some individuals, the body becomes resistant to leptin. Leptin resistance decreases the beneficial effect of an elevated leptin level to reduce intake. 

While our knowledge of these hormones as a whole is limited, it is even more limited in people with Down syndrome (DS). One study done on children with DS who were not obese found higher levels of leptin concentrations and higher indices of leptin resistance. The increased leptin resistance suggests a risk for obesity. The authors concluded that the higher level of leptin resistance was caused by the genetics of Down syndrome. Interestingly, the children were not obese, but it does suggest the possibility of a propensity to developing obesity at some point. 

Physical activity. Some individuals with DS have a lower activity level. Increasing activity can be done through many activities during the day as well as through exercise. A recent study found that being active is even more important for improving health than losing weight or being trim (this study was not done on people with DS). 

Sleep. People with DS have higher rates of sleep apnea and other causes for poor sleep. Poor sleep can contribute to weight gain. Diagnosing and treating the cause for poor sleep has the potential to help with weight management. Additional information about sleep in people with DS can be found at this link.

Hypothyroidism. Hypothyroidism (underactive thyroid) can contribute to weight gain. Hypothyroidism is much more common in people with DS. The Global Medical Care Guidelines for Adults with Down Syndrome recommend regular screening for hypothyroidism. Appropriate treatment may aid weight management. 

Medications. There are many medications that cause weight gain. Some of these medications are used to treat psychological or behavior problems. If weight gain or obesity is a concern for someone taking these medications, talk with your health care provider about reviewing the medications being used and considering alternatives. 

Weight management strategies

What works for one person doesn't always work for another. No one plan fits all. It may be helpful to start with an assessment of problem areas. At there times of the day or night when the person eats more? Does the person eat in response to stress or boredom? Are there particular foods that are a problem? Here are some basic tips: 

Build a healthy dietary approach to food. In our experience with people with DS, we have generally not found restrictive diets (e.g., severely restricting carbohydrates) to be successful with long-term weight loss. Building a healthy dietary approach to food (including portion sizes and moderation) has been more likely to be successful. Incorporating regular exercise into the plan helps prevent regaining weight and adds fitness to the overall health plan.

Reduce intake of processed foods. While we do not recommend eliminating or severely restricting carbohydrates or any food group, we do recommend reducing processed foods (many of which contain sugar and other processed carbohydrates) as much as possible. One of my lines is "Many of us could dramatically reduce processed foods and still not be on a low carbohydrate diet." Healthier alternatives that are unprocessed or "less" processed are available (such as whole grain bread instead of white bread or brown rice instead of white rice). 

Hydrate. Drink plenty of water and other fluids that don't contain sugar or artificial sweeteners. Weight gain can occur if thirst is quenched by eating food or drinking fluids that contain calories, sugar, or artificial sweeteners. If an individual does not like plain water, we recommend adding fruit to water or trying flavored waters without artificial sweeteners (such as LaCroix, Polar Seltzer, or Spindrift). 

Review portion sizes. Balance and portion control can be very successful. We share several resources on portion control in the resources linked at the end of this article. 

Review the other facets of eating. Does the person eat too fast which can lead to eating larger quantities? Does the person eat when they are bored or anxious? Are there other go-to activities that can be built into the routine so they turn to them to address boredom and stress rather than eating? As with addressing many habits/behaviors, directing someone to something rather than away from something can be more beneficial. For example, someone might conclude from looking at their eating habits, "I tend to eat in the evening after dinner because I am tired and bored. Instead, I will head to bed (and out of the kitchen) earlier and read." 

Consider a form of recording food intake. This has been shown to be effective in people without DS (I am not aware of a study in people with DS). There are a variety of apps (e.g., Lose It or MyFitnessPal) that can be used. Similarly, programs like WW (Weight Watchers) use "points" to get a sense of how much is being consumed. Studies (done in people without DS) have shown that people will eat less even if they are doing nothing other than recording what they are eating. 

Include the person in meal prep. Participating in the food preparation and cooking processes can be beneficial, too. Planning meals that are made from healthier food selections and preparing them can bring good nutrition into the daily routine. 

Prioritize physical activity. Add exercise to the schedule, at least 5 days a week. Rather than "finding" time for it, we encourage putting it on the calendar/schedule as one would an appointment. Losing weight by exercise alone is not possible for most people. Some people eat more and gain weight when they start to exercise (it is easy to "out-eat" your exercise). However, coupled with the healthy approach to eating noted above, exercise can promote healthy weight maintenance and overall improved fitness. Exercise has many benefits for physical and mental health. 

Family involvement. Lastly, consider making it part of the lifestyle of the entire family or household. It can be challenging to make changes when only one person in the household makes those changes. The health and wellness of the entire family or household can be promoted by participating in the recommendations included above. 

As we have continued to learn more, there has been more discussion on addressing weight using medications and/or surgery. While I won't discuss those here, they may be approaches to consider and discuss with your health care provider, especially if there are health complications from obesity. 

Resources

Articles and webinars on nutrition and healthy eating

Visuals and videos on nutrition and healthy eating

Please note: The information on this site is for educational purposes only and is not intended to serve as a substitute for a medical, psychiatric, mental health, or behavioral evaluation, diagnosis, or treatment plan by a qualified professional. We recommend you review the educational material with your health providers regarding the specifics of your health care needs.

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