Alzheimer’s disease (AD) is the most common cause of dementia, among older people (1). People with Down syndrome (DS) develop symptoms of AD in their late 40s or early 50s. Studies show that there may be differences unique to persons with DS. Individuals with DS had a higher prevalence of mood changes, over-activity, auditory hallucinations, disturbed sleep, but less aggression, than the general adult population with AD.

Research and clinical evidence suggest that the incidence of AD for people with Down syndrome (DS) may be the same or greater than the general population. Not all individuals with DS or ID will develop AD and those showing Alzheimer’s-type symptoms may not actually have AD. Other conditions can mimic symptoms, such as drug interactions, and must be considered before a diagnosis of dementia is made (3). It is estimated that of individuals with DS who are over age 35, twenty-five percent or more show clinical signs and symptoms of Alzheimer’s-type dementia. The percentage increases with age. In the general population, AD does not usually develop before age 50, and the highest incidence (in people over age 65) is between five and 10 percent. The incidence of AD in the DS population is estimated to be three to five times greater.

Alzheimer’s disease is a slow and progressive disorder of the brain. Alzheimer’s can affect short term memory loss. A person with Alzheimer’s may not remember what he or she is told. Personality changes may be seen with irritability and volatile behaviors. Personal self care abilities diminished and hygiene is often affected. More assistance and direction is needed for bathing, oral care and toileting. Skills that were learned become disorganized and no longer functional such as self-dressing. More guidance and supervision is needed. Use simple directions, instructions or cues.

Effects of Dementia and AD

Appetite and food desires can be affected by psychological and behavioral factors such as depression, social withdrawal, agitation, wandering, paranoia, confusion, and/or irritability (usually negatively). The individual may not be aware of being hungry, may forget to eat or needs encouragement to eat. They may not be aware that their stomach is full and overeats or wants to eat all the time and may forget what they liked or didn’t like to eat.

A number of these symptoms, traits and/or changes may be the result of a change in the person’s life or their care and treatment. Medications and their side-effects (dry mouth, taste, hunger or anorexia, GI distress, level of alertness) can affect food intake. A food consistency change can alter how foods are perceived or recognized and affect intake. Sores in the mouth, poor-fitting dentures, gum disease or dry mouth may make eating difficult. The individual may need special utensils and dinner ware and/or other table set ups. Problems with constipation, swallowing or dysphasia, and/or congestive obstructive pulmonary disease, to name a few, can limit the desire to eat or eat adequately.

The following outline offers tips to provide nourishment and encourage independence in a safe and effective manner.

Eating Pattern

• Breakfast (or early morning) is often the best meal eaten, followed by lunch. Persons are often more alert in the morning.
• Caregivers should generally serve meals and/or snacks the same time every day.
• Learn what signals mean the person is hungry. If the person doesn’t want to eat, take a break, involve him or her in another activity, and return to eating later.
• Give the person plenty of time to eat. It can take a person an hour or more to finish eating.
• The person may not remember when or if he or she ate. If the person continues to ask about eating a meal, consider serving one or two components of that meal, e.g., juice or fruit, cereal or bread.
• Use memory aids to remind the person about meal times such as a clock with large numbers, an easy-to-read appointment calendar, or a chalk or bulletin board for recording the daily schedule.

Food and Eating Concerns

• The individual’s food choices may change, not remembering their food likes and dislikes or for some other reason such as consistency change.
• Food taste is affected by the disease, medications and the aging process. Reduced ability to smell odors diminishes the taste of food. Aroma therapy (vanilla, rose, lemon, cinnamon) and/or the smell of food (when cooking or serving), can stimulate the appetite or help the individual be more alert. Herbs, spices (cinnamon is very good), and flavoring extracts enhance food flavors. Cheese, meat, butter and maple flavors are usually well liked as are ketchup, other condiments and gravies added to foods.
• The person may rely on visual cues (color) to determine sweetness and acceptability of a food. Foods with visual appeal can stimulate the appetite. Choose foods of different shapes, colors, textures and tastes, familiar flavors and see what works best.
• Caregivers should give the person food choices, but limit the number of choices and update a preferred food list as needed.
• To help with decreased appetite, weight maintenance or gain, more calorie or nutrient dense foods may be needed. These include foods with extra healthy fats (vegetable-type oils), added sugars, and protein. Preparing some of the person’s favorite foods; increasing the person’s physical activity; and/or planning for several small meals and snacks rather than three large meals can help.
• Keep track of fluid intake to ensure good hydration.
• Let the person participate in some phase of food making (e.g., rolling out dough, tearing apart lettuce, peeling potatoes).
• Depending on chewing and swallowing abilities, the individual may need to avoid regular foods or hard or sticky foods. They may require foods cut up into bite-size pieces, chopped, ground, or pureed as well as thickened liquids to address dysphasia. Hard or crunchy foods may be disliked because of its grainy texture or it hurts the mouth.
• “Finger foods” can be offered when utensils are refused or unmanageable. These include pancake roll-ups, pudding in an ice cream cone, cereal bars, vegetables and potato wedges, fortified gelatin squares, cookies, fruit with peanut butter. Soups can be offered in mugs.
• If the person is over eating or eating inappropriate foods; reduce access to certain foods, disguise foods that are being eaten in excess (e.g., put plain wrapper on ice cream), substitute similar foods that are healthier, provide finger food snacks regularly, and/or introduce food related activities such as kneading dough or washing vegetables.

Food and Eating Concerns

• The individual’s food choices may change, not remembering their food likes and dislikes or for some other reason such as consistency change.
• Food taste is affected by the disease, medications and the aging process. Reduced ability to smell odors diminishes the taste of food. Aroma therapy (vanilla, rose, lemon, cinnamon) and/or the smell of food (when cooking or serving), can stimulate the appetite or help the individual be more alert. Herbs, spices (cinnamon is very good), and flavoring extracts enhance food flavors. Cheese, meat, butter and maple flavors are usually well liked as are ketchup, other condiments and gravies added to foods.
• The person may rely on visual cues (color) to determine sweetness and acceptability of a food. Foods with visual appeal can stimulate the appetite. Choose foods of different shapes, colors, textures and tastes, familiar flavors and see what works best.
• Caregivers should give the person food choices, but limit the number of choices and update a preferred food list as needed.
• To help with decreased appetite, weight maintenance or gain, more calorie or nutrient dense foods may be needed. These include foods with extra healthy fats (vegetable-type oils), added sugars, and protein. Preparing some of the person’s favorite foods; increasing the person’s physical activity; and/or planning for several small meals and snacks rather than three large meals can help.
• Keep track of fluid intake to ensure good hydration.
• Let the person participate in some phase of food making (e.g., rolling out dough, tearing apart lettuce, peeling potatoes).
• Depending on chewing and swallowing abilities, the individual may need to avoid regular foods or hard or sticky foods. They may require foods cut up into bite-size pieces, chopped, ground, or pureed as well as thickened liquids to address dysphasia. Hard or crunchy foods may be disliked because of its grainy texture or it hurts the mouth.
• “Finger foods” can be offered when utensils are refused or unmanageable. These include pancake roll-ups, pudding in an ice cream cone, cereal bars, vegetables and potato wedges, fortified gelatin squares, cookies, fruit with peanut butter. Soups can be offered in mugs.
• If the person is over eating or eating inappropriate foods; reduce access to certain foods, disguise foods that are being eaten in excess (e.g., put plain wrapper on ice cream), substitute similar foods that are healthier, provide finger food snacks regularly, and/or introduce food related activities such as kneading dough or washing vegetables.

Dining Environment and Table Setting

• Provide a quiet, calm, reassuring mealtime atmosphere, limiting distractions. Soft music can be relaxing. Be patient and avoid rushing. Be sensitive to confusion and anxiety.
• Provide a well lighted dining area with bright and contrasting colors of furnishings. Provide appropriate tables and chairs and encourage the person to sit up straight with his or her head slightly forward. If the person’s head tilts backward, move it to a forward position. Allow the person to eat with others as long as possible and best if it is in the same spot at the table.
• Select brightly colored dishes that “show off” food. Avoid patterned placemats, patterned plates, printed tablecloths. Remove decorative centerpieces.
• Choose dishes and eating tools that promote independence. If the person has trouble using utensils, use a bowl instead of a plate, or offer utensils with large or built-up handles. Use straws or cups with lids to make drinking easier. Set bowls and plates on a non-skid surface such as a dycem, cloth or towel.

Serving Food and Assistance

• Be sure the persons’ and server’s hands have been washed.
• The caregiver may need to describe the foods being served. Serving foods one at a time may improve intake.
• Check food temperature as the individual may not be able to tell if a food or beverage is too hot to eat or drink. Serving food warm increases its aroma and appeal.
• To simplify feeding tasks, serve foods ready to eat – no wrappers, buttered breads. Cut foods into-bite sized pieces before serving.
• Provide direction as necessary to prompt the person to eat, chew, swallow, and drink. Be sure the food is swallowed after each bite. Be alert for signs of choking and know how to use the Heimlich maneuver.
• Demonstrating eating behavior or providing hand-over-hand feeding may be necessary.
• Tuck a napkin under the person’s chin or cover his/her chest with a towel if necessary. Offer a moistened towel or napkin for washing hands after the meal.

Observe for Signs of Chewing and Swallowing Difficulty: Report any changes

• Coughing and choking on food and /or liquids
• Taking along time to eat a meal
• Hoarseness or a wet gurgly or bubbly voice
• Heartburn or indigestion
• Food/liquid coming out through the nose
• Excessive drooling, associated with eating
• Frequent respiratory infection/ history of aspiration pneumonia
• Weight loss and/or dehydration
• Pain during swallowing
• Increased mucus/phlegm lump in throat
• Vomiting during meals
• Vomiting after meals
• Food being stuck in “pockets” in the mouth (along tongue or in cheek)
• Multiple swallows on a single mouthful of food
• Fatigue or shortness of breath while eating
• Feeling that something is stuck in the throat or went down the “wrong pipe” Spitting up food

Moistening Food Tips

Salivary secretion often reduces with age. The elderly often have a dry mouth which can make it difficulty to chew and swallow foods. Some consumers benefit from moisten foods will have their food served moist with the appropriate liquid/sauce. Use these guidelines when moistening foods.
All food should be served moist or moistened with the appropriate sauce for purees and ground diets unless otherwise specified. Foods can be topped with 1-2 Tablespoons per ½ cup or 3oz. serving. Items may need processing for ground or puree textures.

Suggestions

Meats:
Low fat/calorie: Broth, Dijon mustard, Light mayonnaise, Light Ranch dressing, BBQ sauce, catsup, steak sauce, fruit sauce, chutney
Higher calorie: Gravy, mayonnaise, Ranch dressing, Olive oil with mince garlic or herbs, sour cream, cheese sauce,

Chicken or Turkey:

Low fat/calorie: Broth, Dijon mustard, Light mayonnaise, Light Ranch dressing, BBQ sauce, cranberry sauce, apricot sauce or other fruit sauce. Chutney
Higher calorie: Gravy, mayonnaise, Ranch dressing, Olive oil with mince garlic or herbs, sour cream, cheese sauce, pesto sauce,

Tuna or Fish:

Low fat/calorie: Broth, Dijon mustard, Light mayonnaise, Light Ranch dressing, Light Dill or tarter sauce
Higher calorie: mayonnaise, Ranch dressing, Tarter sauce, Dill Sauce, Lemon Butter/Margarine, Olive oil with minced garlic and lemon or herbs, Hollandaise Sauce, sour cream, cheese sauce, pesto sauce

Eggs:

Low fat/calorie: Light mayonnaise, salsa, catsup, light ranch dressing, cheese sauce
Higher calorie: Hollandaise sauce, mayonnaise, ranch dressing, sour cream, pesto sauce

Breads and Starchy:

Breads

Low fat/calorie: Nonfat milk, Light mayonnaise, Light Ranch dressing, fruit sauce, broth
Higher calorie: Low fat or Whole milk, Cream, Butter or margarine, Jelly, Jam, mayonnaise, maple syrup, chocolate syrup, sour cream, cheese sauce, pesto sauce, Carmel sauce, butterscotch sauce

Pastas:

Low fat/calorie: tomato sauce, broth
Higher calorie: creamy sauce, sour cream, Hollandaise sauce, butter, margarine, olive oil, sour cream, cream cheese, cheese sauce, pesto sauce

Potatoes

Low fat/calorie: catsup, light ranch dressing, light mayonnaise, broth
Higher calorie: butter, cream, margarine, ranch dressing, sour cream, cream cheese, cheese sauce, pesto sauce

Cereals:

Low fat/calorie: nonfat milk, Higher calorie: Low fat or whole milk, cream, butter or margarine, Jelly, Jam, maple syrup, chocolate syrup, sour cream, cream cheese, cheese sauce, Carmel sauce, butterscotch sauce

Fruits: (only if dry)

Low fat/calorie: Light ranch dressing, Light mayonnaise, Light French dressing, Light salad dressing
Higher calorie: Whipped cream, mayonnaise, French dressing, jelly or jam, syrup, chocolate syrup, sour cream, cream cheese, Carmel sauce, butterscotch sauce

Vegetables: (only if dry)

Low fat/calorie: Light ranch dressing, Light mayonnaise, Light French dressing, light salad dressing
Higher calorie: Whipped cream, mayonnaise, French dressing, jelly or jam, Hollandaise sauce, sour cream, cream cheese, cheese sauce, pesto sauce

By
Jacqueline Larson M.S., R.D.N.