When caring for a patient with Down syndrome, it is important to remember that the patient may struggle with speech, learning, mobility, and self-care needs. These needs may be extensive, especially in the home. The patient still has the right to make choices if able and to be treated with dignity and respect. Always provide quality care with a positive attitude. When working with the child, keep in mind that the parents may be grieving and struggling with how to handle all of the complications associated with the disease. It is important to emphasize resources such as child healthcare professionals, group counseling, and literature to help the family learn and deal with the child's problems. Be sure to help promote independence and self-help skills such as self-feeding. Some areas that should be observed are socialization skills, verbal skills, activities of daily living, preventative health, nutrition, and behaviors.
Anything that the child needs to learn should be broken down into the smallest components or baby steps to help them digest the information (Hockenberry & Wilson, 2014).
Socializing can be difficult for the patient with Down syndrome. Role-playing and positive reinforcement can be particularly helpful (Hockeberry & Wilson, 2014). Teach and encourage parents to show the child socially acceptable behaviors such as waving goodbye, saying hello, responding to their name, and greeting visitors. It may be helpful to expose the child to strangers so that they can practice to enhance their self-esteem (Hockenberry & Wilson, 2014). Preschool programs can be helpful and encourage social interactions. Educating the family is very important. If there are cognitive impairments, the child or adult may not be able to recognize cues from others. This can be frustrating to the patient as well as the family. One strategy is to practice exaggerated cues to help the patient recognize the behaviors of others and respond appropriately. Short-term memory may also be a problem. Explaining directions in simple, short sentences, one step at a time may be helpful.
Remember that verbal skills may be delayed more than other physical skills. In order to speak, hearing and interpretation of sounds should be checked to make sure the patient can hear properly. Assistive devices may be needed to help the process. Sometimes, a picture board may be used to help the child express their feelings and thoughts (Hockenberry & Wilson, 2014), or children and adults may also learn sign language.
When working with a person with Down syndrome, observations should include noticing if the patient is irritable, unresponsive to contact, abnormal eye contact during feeding, gross motor problems, decreased alertness to voice cues, or difficulties with activities of daily living. If any of these areas show change, the nurse should be alerted.
Be sure to assist the family with the prevention of other problems. Discuss the need for modifications as part of the daily routine to aid in patient care. For example, the joints on a baby or toddler may be limp, and the child may sag in the parent’s arms. Encourage parents to swaddle the newborn tightly and hold the toddler close, supporting their head and spine (Perry, Hockenberry, Lowdermilk, & Wilson, 2014). Observe for respiratory problems due to decreased muscle tone. An underdeveloped nasal bone may lead to inadequate draining, stuffiness, and dry mouth. The child may also be at risk for upper respiratory infections (Hockenberry & Wilson, 2014). Be sure the parents know how to suction the nasal passages properly if needed. Suggest the parents rinse the child’s mouth after eating and sit the child upright for feedings. Also, if the patient needs to be fed, give adequate time for chewing. Make sure the mouth is empty before adding more food. Using a long, straight-handled spoon to push toward the back of the mouth will prevent the tongue from pushing the food back out (Hockenberry & Wilson, 2014). Note that mouth breathers have a difficult time swallowing. Observe for gagging or choking. Food should be eaten slowly, and they should take small bites. Fluids should be consumed slowly as well. Dysphagia is often a concern due to the patient’s short neck. This can increase the risk of aspiration pneumonia (Herron-Foster & Bustos, 2014). Be sure to educate the parents or patient on the importance of taking the time to eat meals. Additionally, the Down syndrome patient often has problems with gastric motility, such as gastric reflux or gastrointestinal upset (Herron-Foster & Bustos, 2014). Observe for nonverbal pain cues and use a rating scale for pain levels. Be sure to note all food intake.
Because of poor muscle tone, gastric motility may be slowed, causing constipation. Make sure fiber is a regular part of the diet. Eating habits should be carefully observed and documented. Height and weight measures should be monitored regularly to check for obesity and high BMIs (Perry, Hockenberry, Lowdermilk, & Wilson, 2014).
The child may grow more slowly and not reach developmental milestones on time. Keep a growth chart to measure height and weight regularly. Skin care is also important. Be sure to check the skin for cracks or reddened areas. Be sure to apply lotion when necessary and use sunscreen when outside (Perry, Hockenberry, Lowdermilk & Wilson, 2014). Check bony prominences, such as heels and elbows, for red areas or sores (Herron-Foster & Bustos, 2014). Furthermore, check skin folds for rashes. Be sure the area is washed and patted dry. Apply topical barrier creams if indicated by the treatment plan. If any areas look to be of potential concern, report to the nurse for additional treatment planning. Do not use any perfumed or alcohol-based products, as this can cause irritation (Herron-Foster & Bustos, 2014)
Recreational activities are also important. Not only do these activities help with muscle tone, balance, and coordination, but they also help to manage weight. Furthermore, activities in the community can help with socialization skills (Hockenberry & Wilson, 2014). Ensure the activities are within the child's or adult's limits and will not cause undue stress on joints and weak muscles.
Following a nutrition plan is also important. The patient should eat three meals daily, including the food groups (Perry, Hockenberry, Lowdermilk, & Wilson, 2014). Self-management techniques can include a food diary to monitor calories and sodium intake if heart conditions are present. Check the treatment plan or discuss options with the nurse.
When working with children and adults, check for proper oral hygiene. The patient may be unable to brush effectively due to decreased motor skills or cognitive impairments (Herron-Foster & Bustos, 2014). They made need instructions on how to brush and floss effectively. There are also several products available that can help the patient with their oral hygiene. Be sure to check the treatment plan for aids or talk to the nurse if you notice problems.
Safety is also a concern. The patient may have poor neck control or be generally weak. Protecting the neck and proper transferring of bedridden patients is essential. Logrolling techniques can also be used, as a two-person lift or equipment designed to lift patients may need to be used (Hockenberry & Wilson, 2014). Other medical equipment may be used as well to help prevent falls. Examples are wheelchairs, shower chairs, or walkers.
In older adults, arthritis may be an issue. Special pillows or rolled towels may be needed to support the neck (Herron-Foster & Bustos, 2014). Additionally, a flat towel may be a better alternative than a pillow so the neck is not hyper-flexed. Wedges may also help to alleviate back and hip pain. Document any pain and notify the nurse if the pain is new or has worsened.
Prevention of illness is also important. Be sure to teach the patient to wash hands thoroughly and to stay away from people who are ill. When teaching the patient, breaking up the task into steps may be necessary. Use simple, short sentences and, if possible, ask the patient to repeat each step back to you (Herron-Foster & Bustos, 2014).
Working with patients who are diagnosed with Down syndrome can be challenging. It is important to remember that their physical and mental growth rate may be delayed. Helping the patient and family make good choices and provide a safe environment is a particular duty of the certified nursing assistant. If any changes occur in the patient’s mood or behavior or if there are new problems that develop, report to the nurse for additional treatment planning. Caring for the Down syndrome patient can be very rewarding. Patience is a key factor in helping these patients have a good quality of life.