by Joan E. Medlen, R.D.

Weight management is something that everyone would benefit from understanding early in life. The first article in this three-part series looked at the importance of the feeding relationship to a healthy lifestyle and early eating habits for young children with Down syndrome. The second article looked at concerns of the school-age and adolescent years: carefully building independence and modeling the habits that shape a healthy attitude toward food and activity. This article, the last of the series, continues to focus on issues that are relevant to weight management and Down syndrome, with an emphasis on concerns that arise in adulthood. For adults with Down syndrome, weight management involves more than the physical changes of maturity. It is a complex mix of community involvement, friendships, daily routines, living situations, activity, and food choices along with the physical challenges of age. This article will explore many of these influences and how we, as parents, family, and support people can encourage adults with Down syndrome toward a healthy lifestyle.

The Effects of Metabolism

Research suggests that children with Down syndrome have a lower basal metabolic rate (BMR) than their same-aged peers. BMR is the rate a person burns calories for fuel when completely at rest—or sleeping. As a result, a child with Down syndrome uses fewer calories while they are asleep and also throughout the day. In addition, adults with Down syndrome (ages 18-20) have finished growing and require fewer calories than they did as a child. If eating or exercise habits do not change to compensate for this decrease in energy requirements, the energy equation quickly becomes unequal with Calories in outweighing Calories out.

Slowing or Stopping the Rate of Weight Gain

If your child is still gaining weight consistently, focus on stopping or slowing that upward trend. This is a quick fix, however, and only meant as a detour while the two of you consider other factors and make changes. To do this, it is important that your adult child understands and shares your concern regarding his weight gain and overall health. Without him on your team, you will be waging a losing battle. Working together, success is far more likely.

The first thing to do is visit with your family doctor to rule out any medical causes of weight gain such as hypothyroidism. Be certain to ask if there are any physical limitations to be considered if your child decides to increase his physical activity. Once the physician has given you the "green light" for lifestyle changes, your child and you can begin to create a plan together for a healthy lifestyle.

To slow or stop weight gain, begin by choosing an area of the energy equation to modify. Keep in mind you’re not trying to accomplish weight loss at this time. Focus on beginning healthful habits that your adult child is willing to do. Some areas to consider are:

• Increasing activities such as walking, and using stairs,
• Confining eating to designated areas,
• Balancing meals,
• Planning snacks rather than eating uncontrolled, and
• Menu planning.

Usually small changes in any one of these areas will slow or stop consistent weight gain. Do not try to create perfect habits. Accept and encourage any changes, no matter how small, your child is willing to make. Many times the most effective initial change to encourage is an increase in activity. A walk around the block for each 30 minutes of television watched is very effective in our culture. Increasing activity has some other health benefits that may spill over to other areas as well. They include, but are not limited to:

• An increase in positive attitude,
• An increase in metabolic rate after exercise,
• A decrease in appetite,
• An increase in lung capacity,
• A decrease in resting heart rate,
• An increase in muscle mass and muscle strength, and
• A decrease in blood pressure.

Once you have both agreed on a plan to slow or stop weight gain, it is time to move on to the next step: evaluating and shaping opportunities for choice and control regarding food and activity.

Making Lifestyle Changes: Who Decides?

In the past, when a medical intervention was needed for a person with Down syndrome, a professional stepped in to create a plan or a treatment to correct the situation. Basically, weight management was done to them. This can happen in any living situation, and still does. Many well-meaning parents and professionals deny adults with Down syndrome control over their food choices by mandating a strict menu, a dietary restriction, or an exercise regime. This rarely leads to long-term success in weight management. In fact, if the person with Down syndrome is not involved in the decision-making process, it might lead to rebellious choices such as covert eating or uncontrolled eating at social gatherings in an effort to regain control of food choices. For this reason, it is wise to avoid "diets" and "treatment plans" by involving the person with Down syndrome in discussions about weight and overall health promotion and letting them take the lead in the decision-making process.

One way to begin identifying potential areas for change is to evaluate the living situation of your adult child and try to create opportunities for choices and control that include healthy options as much as possible.

In Group Settings:

Meet with the owner or manager of the living group to discuss your concerns. Consider asking the following questions:

• Are the people who live in the group home involved in menu planning? Cooking? Shopping?
• Does the menu structure allow for more than one entree and a variety of side dishes for each meal?
• Does the support staff model and encourage healthy choices?
• Is there a variety of healthy foods available for snack choices?
• Are opportunities for physical activity such as low-impact aerobics, walking, or biking available? How often?

Once you have asked these questions, share the options with your child. Emphasize that he is in control of his options by pointing out the areas where he has choices to make.

Living at Home with Family:

Ask yourself this question: Is better health a priority for everyone who lives in your home? It is important to send a consistent message regarding healthy habits to your child with Down syndrome. If it is, gather as a family to discuss what changes each person would like to make for a healthy lifestyle. Most families do not have weekly menus, but now would be a good time to begin using them. Together, create menus for meals and snack choices. Most meals (breakfast and lunch in particular) can be written to include different options for varying needs in the family. The point of the menu is to ensure that only foods the family agrees upon are in the home. Involve your adult child in cooking and shopping activities.

Supported and Independent Living:

Menus are very helpful for adults with Down syndrome living independently. However, they must be written by the self-advocate. Encourage using a variety of foods in menu planning. When cooking for one or two, or when cooking is a lot of work, it is easy to only make a few things that are favorites like macaroni and cheese, peanut butter sandwiches, and other easy-to-prepare dishes. One way to encourage experimentation with new recipes is to plan dinner together once a month. The theme of the meal is trying new recipes. It is easier to try something new with a companion. Together, you can choose a new recipe to try, create the menu for the night, shop for what is needed for the recipe, provide support to your child learning the recipe, and live the adventure of tasting this meal together. If it is good, then begin adding it to the menu once a month.

In this living situation, parents and support people have the least influence or control over what actually happens. However, menu planning, when done by the person with Down syndrome with support, only as needed, not only provides structure, but also makes shopping and budgeting much easier because it is planned in advance. By planning ahead using a menu, the foods needed for recipes are on the shopping list, and therefore available when it’s time to cook them. Menu planning is the best defense against developing the habit of standing in front of the cupboards trying to decide what to cook. Cupboard-side menu planning typically leads to fast foods or skipped meals.

Nutrition Guidelines: A "Rule of Thumb" Approach

As a parent or support person, it is helpful to have an idea of the most basic concepts for healthy eating. Use these guidelines to assist you:

• Plan for and eat three meals a day.
• Time those meals so they are not more than 5 hours apart. If meals need to be longer than 5 hours apart due to work or school schedules, plan for snack.
• Each meal should consist of 3 out the 5 food groups for overall balance.
• Each planned snack should consist of 2 out of the 5 food groups for overall balance.
• Don’t go out of your way to plan for the "sometimes/others" group (the sixth group at the top of the pyramid). They seem to find their way into menus on their own.
• Encourage your child to take one-half of the portion they feel like eating. When that is gone, have them set the timer for 15 minutes. If they are still hungry after the timer goes off, then seconds are in order.

These guidelines will ensure overall nutritional balance throughout the day while leaving room for food preferences and individual decisions. Teaching adults with (or without) Down syndrome to choose within these parameters because they are healthy for everyone will promote healthful choices without feeling restrictive. If you are worried about the nutrients that may be missed by food choices, an over-the-counter vitamin will take care of any nutrients that are missed.

Activity & Friendships: Essential Pieces of the Puzzle

The last area to consider, though just as important, is activity. What kind of opportunities does the adult with Down syndrome have to create new friendships, socialize with old friends, and participate in recreational activities? In a recent study, researchers found a correlation between friendships and opportunities for recreation and the body mass index (BMI) of adults with Down syndrome. BMI is a measurement used to assess body weight and health risks using body weight and body fat. This study suggests that for adults with Down syndrome, friendships and social interactions have a more consistent and direct effect on BMI than diet and exercise. This is a very strong message. It suggests that better health and weight management for adults with Down syndrome must include the element of friendships and social recreation in addition to the usual healthy lifestyle choices (eating and exercise) to be successful. Friendships and opportunities for recreation are "inextricably linked" to overall health.

As a dietitian and mother of a child with Down syndrome, I see this as an opportunity to create some healthful options for people with and without Down syndrome now and in the future. Once again, it will require advocacy by parents, parent groups, and professionals to be successful. Some places to consider beginning include:

• Joining walking or Volksmarch clubs, especially those associated with a hospital,
• Offering community aerobic classes at the group home or nursing home,
• Doing aerobic tapes with friends at home or in apartments,
• Joining local health clubs and buying YMCA memberships,
• Hiring a personal trainer at a health club or YMCA to work with two or three adults with Down syndrome as a small group,
• Joining a hiking group for beginners,
• Creating an exercise buddy system with friends and relatives, or
• Walking the dog with a group of dog owners.

Although it is important to promote healthy eating habits, the nutrition and activity pieces to the puzzle of weight management for adults with Down syndrome are relatively easy. The harder pieces to fit into place are the ones we cannot dictate or force: choosing to eat wisely, choosing to be active, and cultivating the friendships that complete the puzzle of a fulfilling and healthy life for our children. The best we can do is to ensure the tools for a healthy lifestyle are taught, available, and encouraged in a positive way, and encourage friendships and recreation throughout their lives.

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Looking for a Cookbook?

After purchasing and evaluating a number of cookbooks written for healthy, simple cooking in small quantities, I am recommending the award-winning Quick & Healthy series. Learning the recipes will take support, but they are written in an easy-to-follow format, require little preparation, are healthy, and taste good!

Quick & Healthy: Recipes and Ideas, and Quick & Healthy Volume II by Brenda J. Ponichetera, R.D. Published by ScaleDown, 1991, ISBN: 0962916005 and 1995, ISBN: 0962916013, respectively. Both $16.95.

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References

Luke, A., Rozien, N.J., Sutton, M., Schoeller, D.A. "Energy Expenditure in Children with Down Syndrome: Correcting Metabolic Rate for Movement." Journal of Pediatrics, Vol. 125, 1994, p.829. Medlen, J. "Looking at Metabolism." Disability Solutions, Vol. 1, 1996, p. 10.
Daley, W. "Dealing with Obesity in Community Living Arrangements." AAMR News and Notes, Vol. 9, 1996.
"Letters to the Editor." AAMR News and Notes, Vol. 10, 1997, p. 2.
Fujiura, G., Fitzsimons, N., Marks, B., Chicoine, B. "Predictors of BMI Among Adults with Down Syndrome: the Social Context of Health Promotion." Research in Developmental Disabilities, Vol. 18, 1997, p.261.
Duyff, R.L., The American Dietetic Association’s Complete Food and Nutrition Guide. Chronimed Publishing, 1996, p. 20.

Reprinted from Disability Solutions.

The article above is reproduced from the Down Syndrome Guide disseminated by the Down Syndrome Clinic at Kennedy Krieger Institute. In accordance with federal copyright restrictions, the contents of this booklet may not be reproduced by photocopying or any other means without written permission from the copyright holder. © 1999 George Capone, M.D.


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