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Care of the Patient with Down Syndrome

1 Contact Hour
Accredited for assistant level professions only
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This peer reviewed course is applicable for the following professions:
Certified Nursing Assistant (CNA), Home Health Aid (HHA), Licensed Nursing Assistant (LNA), Medical Assistant (MA), Medication Aide
This course will be updated or discontinued on or before Thursday, November 19, 2026

Nationally Accredited

CEUFast, Inc. is accredited as a provider of nursing continuing professional development by the American Nurses Credentialing Center's Commission on Accreditation. ANCC Provider number #P0274.

Outcomes

≥ 92% of participants will know how to care for a patient with Down Syndrome.

Objectives

After completing this course, participants will be able to:

  1. Define Down Syndrome.
  2. Identify characteristics of Down Syndrome.
  3. Outline how to communicate with a patient with Down Syndrome.
  4. Identify how to care for the patient with Down Syndrome.
  5. Recognize barriers to care and disability acts for patients with Down Syndrome.
CEUFast Inc. and the course planners for this educational activity do not have any relevant financial relationship(s) to disclose with ineligible companies whose primary business is producing, marketing, selling, re-selling, or distributing healthcare products used by or on patients.
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Care of the Patient with Down Syndrome
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Author:    Julia Tortorice (RN, MBA, MSN, NEA-BC, CPHQ)

Introduction

Down Syndrome is the most frequently seen congenital disorder in newborns. Adults with Down Syndrome now live well into their 60’s and even into their 70’s (NHS Inform, 2024). Many go to normal schools and are employed in part due to advances in medical care and the Americans with Disabilities Act. The services provided for these patients allow them more freedom than ever to live in their homes or with their families. If the disabilities are more severe, they may live in a group home or assisted living. Although they often suffer from co-morbid conditions, they can still maintain a good quality of life. Caring for patients with Down Syndrome is a meaningful responsibility. By understanding their needs, communicating effectively, and providing compassionate care, CNAs can greatly enhance the quality of life for these individuals.

What is Down Syndrome?

Down Syndrome is a genetic condition that occurs when a person is born with an extra copy of chromosome 21. This condition affects a person's physical and intellectual development. Normally, a person has 46 chromosomes, but someone with Down Syndrome has 47. This extra chromosome can lead to certain physical features and developmental delays(NHSNDSS, n.d.a). The cause of the extra chromosome is unknown, but it occurs more frequently in older mothers. This extra chromosome changes during the development of the individual to cause characteristics associated with Down Syndrome.

Characteristics

Physical Characteristics

People with Down Syndrome often have some common physical traits. These may include:

  • Flat facial profile
  • Almond-shaped eyes that slant upward
  • Small ears and a short neck
  • Low muscle tone, also known as hypotonia
  • Shorter in stature
  • A single deep crease across the palm of the hand(Mayo Clinic, 2022).

photo of child with down syndrome

Cognitive Characteristics

In addition to physical traits, individuals with Down Syndrome may experience cognitive delays. They may learn new skills more slowly and have trouble with reasoning and judgment. However, with the right support, they can achieve many milestones (Mayo Clinic, 2022).

Affectionate Characteristics

People with Down Syndrome are often described as warm, friendly, and affectionate. They may show affection by hugging, holding hands, or being physically close to others. Showing affection allows individuals with Down Syndrome to connect with others and express their feelings. While this is a positive trait, teaching appropriate boundaries is important, especially with people they don’t know well. Encouraging positive relationships and teaching social skills can help them navigate these interactions in a healthy way.

Guiding Appropriate Behavior

  • Teach Boundaries: Help them understand that it’s okay to hug or be close to someone when appropriate.
  • Model Behavior: Show them how to greet people and express affection in socially appropriate ways.
  • Positive Reinforcement: Praise them when they use appropriate ways to show affection.

Supportive Environments

Creating a supportive environment where individuals feel safe to express themselves can help them develop healthy, positive relationships with others.

Hypersexuality

Hypersexuality refers to behaviors or thoughts related to sexuality that are more frequent or intense than what is typical. In some cases, individuals with Down Syndrome may display behaviors that seem overly sexual. This can be due to a combination of factors, including curiosity, lack of understanding about appropriate social behavior, or the need for more education about sexuality.

How to Manage Hypersexuality

  • Education: It is important to teach patients about boundaries and appropriate behavior. Clear, simple explanations can help them understand what is acceptable.
  • Supervision: Ensure patients are in environments where their behavior can be monitored and guided.
  • Support: Work with family members, educators, and healthcare professionals to create consistent strategies for managing behaviors.

Understanding the Context

It’s important to remember that expressions of sexuality are a normal part of human development. Patients with Down Syndrome may need extra help to understand and navigate these feelings in a socially appropriate way.

Employment

Many individuals with Down Syndrome can and do work (NDSS, n.d.b.). With the right training and support, they can find jobs that match their skills and interests. Working can help them gain independence, build self-esteem, and become more integrated into the community.

Types of Jobs:

  • Service Jobs: Many people with Down Syndrome work in places like grocery stores, restaurants, and retail shops.
  • Office Jobs: Some may work in offices doing tasks like filing, data entry, or customer service.
  • Artistic Jobs: Individuals with a talent for art, music, or crafts might find work in creative fields.

Support for Employment

Programs and organizations exist to help people with Down Syndrome find and keep jobs. These may include job coaching, vocational training, and workplace accommodations to help them succeed.

photo of person with down syndrome working

Living Independently

Many people with Down Syndrome can live independently or semi-independently with support. This means they might live in their own apartment, with roommates, or in a group home. They may need help with some daily tasks, but they can enjoy a level of independence that suits their abilities (CDSS, 2024).

Types of Living Arrangements:

  • Independent Living: Some individuals live independently with occasional help from family or support services.
  • Supported Living: Others might live in a group home or shared housing where they receive regular support with tasks like cooking, cleaning, and managing money.
  • Family Living: Some may choose to live with family members while still working or participating in community activities.

Encourage Independence. Support systems, such as life skills training, help individuals with Down Syndrome develop the skills they need to live more independently. These might include cooking, managing money, using public transportation, and making decisions about their lives.

Communication

When communicating with a patient with Down Syndrome, it’s important to be patient and clear. Here are some strategies:

  • Use Simple Language: Use short sentences and simple words to make it easier for them to understand.
  • Be Patient: Give them time to process what you’ve said and to respond.
  • Use Visual Aids: Pictures or gestures can help clarify your message.
  • Positive Reinforcement: Encourage the patient by praising them when they communicate effectively (Down Syndrome Association, 2023).

Being a Good Listener:

Listening is just as important as speaking when it comes to communication. Here are some tips for being an effective listener:

  • Pay Attention: Show that you are listening by making eye contact and nodding.
  • Be Patient: Let them take their time to express themselves without interruption.
  • Clarify When Needed: Politely ask them to repeat or explain if you don't understand something.
  • Non-Verbal Cues: Watch for non-verbal cues like body language and facial expressions to better understand their feelings

Care of the Patient with Down Syndrome

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.

Daily Care Needs

Patients with Down Syndrome may need help with daily activities. Here’s how you can assist them:

  • Eating and Feeding:
    • Be sure to help promote independence and self-help skills.
    • A patient with Down syndrome often has an underdeveloped nasal bone, leading to inadequate draining, stuffiness, and dry mouth. The child may also be at risk for upper respiratory infections (Hockenberry & Wilson, 2014).
    • Give adequate time for chewing.
    • Make sure the mouth is empty before adding more food.
    • Using a long-handled spoon to push the food to the back of the mouth will prevent the tongue from pushing the food back out (Hockenberry & Wilson, 2014).
    • Fluids should be consumed slowly.  Due to the patient’s shorter neck, there is an increased risk of aspiration pneumonia(Herron-Foster & Bustos, 2014).
    • Low gastric motility may cause Stomach upset, reflux, or constipation.
  • Nutrition:
    • Ensure they eat a balanced diet, considering any dietary restrictions they may have due to other health conditions.
  • Personal Hygiene:
    • Help with activities like bathing, brushing teeth, and dressing if they need it.
    • Teach the patient proper hand washing to prevent illness. Break up the task into steps and use simple, short sentences.
  • Supporting Mobility:
    • The patient may have poor neck control or generally be weak. Encourage them to stay active, as physical activity helps with muscle tone and overall health. Protecting the neck and proper transferring of bedridden patients is essential. Logrolling techniques can also be used.
    • The joints of 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.
    • Assistive devices such as wheelchairs, walkers, and shower chairs may be helpful for support and balance.
    • Special pillows, rolled towels, and wedges may support an older adult's neck, back, and other joints.
    • Encourage gentle strengthening and exercise.  This will help with overall muscle tone, strength, and balance.
  • Medication:
    • Help patients take their medications as prescribed and ensure they attend regular medical appointments (Healthline, 2021).

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.

photo of woman with down syndrome in exercise class

Emotional and Social Support

People with Down Syndrome need emotional and social support to thrive:

  • Be Compassionate: Show empathy and understanding in all interactions.
  • Encourage Social Interaction: Help them build friendships and participate in group activities, which are important for their emotional health.
  • Create a Safe Space: Make sure they feel secure and comfortable in their environment.

Barriers to Care for Patients with Down Syndrome

Several barriers can make caring for a patient with Down Syndrome challenging:

  • Communication Barriers: Difficulty in expressing needs or understanding instructions can lead to frustration.
  • Health Complications: Patients with Down Syndrome may have other health issues, like heart defects, hearing loss, or vision problems, that require additional care.
  • Social Stigma: They may face discrimination or exclusion, which can affect their well-being and access to care(Centers for Disease Control and Prevention [CDC], 2024).

Disability Acts Protecting Patients with Down Syndrome

There are laws that protect the rights of individuals with Down Syndrome.

  • Americans with Disabilities Act (ADA): This law ensures that people with disabilities, including those with Down Syndrome, have equal rights in employment, public services, and other areas of life (U.S. Department of Justice, 2020).
  • Individuals with Disabilities Education Act (IDEA): This law guarantees that children with disabilities receive a free and appropriate public education tailored to their needs(U.S. Department of Education, 2021).
  • Section 504 of the Rehabilitation Act: This law protects individuals with disabilities from discrimination in any program or activity that receives federal funding(U.S. Department of Education, 2021).

Promoting Inclusivity and Advocacy

Inclusivity means ensuring that people with Down Syndrome are fully included in all aspects of life:

  • Encourage Participation: Support them in engaging in activities and being part of their community.
  • Advocate for Their Rights: Make sure their legal rights are respected in all settings.
  • Educate Others: Raise awareness about Down Syndrome and the importance of treating everyone with respect and dignity (National Inclusion Project, n.d.).

Conclusion

Down Syndrome is a genetic condition caused by an extra chromosome. People with Down Syndrome may have specific physical features and experience cognitive delays. When communicating with a patient with Down Syndrome, use simple language and be patient. Provide help with daily activities and emotional support. Monitor their health and alert the nurse if there are changes that are concerning. Individuals with Down Syndrome are often affectionate, and guiding them in appropriate expressions of affection is important for their social development. Understanding and managing hypersexual behaviors in a way that respects the individual’s dignity while ensuring appropriate behavior. Many individuals with Down Syndrome can work successfully with the right support and training. With support, individuals with Down Syndrome can live independently or semi-independently. Be aware of the challenges in care and work to overcome them. Understand the laws that protect the rights of individuals with Down Syndrome.

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Implicit Bias Statement

CEUFast, Inc. is committed to furthering diversity, equity, and inclusion (DEI). While reflecting on this course content, CEUFast, Inc. would like you to consider your individual perspective and question your own biases. Remember, implicit bias is a form of bias that impacts our practice as healthcare professionals. Implicit bias occurs when we have automatic prejudices, judgments, and/or a general attitude towards a person or a group of people based on associated stereotypes we have formed over time. These automatic thoughts occur without our conscious knowledge and without our intentional desire to discriminate. The concern with implicit bias is that this can impact our actions and decisions with our workplace leadership, colleagues, and even our patients. While it is our universal goal to treat everyone equally, our implicit biases can influence our interactions, assessments, communication, prioritization, and decision-making concerning patients, which can ultimately adversely impact health outcomes. It is important to keep this in mind in order to intentionally work to self-identify our own risk areas where our implicit biases might influence our behaviors. Together, we can cease perpetuating stereotypes and remind each other to remain mindful to help avoid reacting according to biases that are contrary to our conscious beliefs and values.

References

  • Canadian Down Syndrome Society. (CDSS). (2024). Housing Options for Adults with Down Syndrome. Canadian Down Syndrome Society. Visit Source.
  • Centers for Disease Control and Prevention (CDC). (2024). Common Barriers to Participation Experienced by People with Disabilities. Visit Source.
  • Down Syndrome Association. (2023). Communication Series-Downs Syndrome Association. Visit Source.
  • Healthline. (2021). Down Syndrome: How to Provide Care. Visit Source.
  • Herron-Foster, B.J., & Bustos, J. J. (2014). Special Needs: Caring for the Older Adult with Down Syndrome. PubMed, 23(4), 225-230, 237. Visit Source.
  • Hockenberry & Wilson, 2014 & Wilson, 2014, M. J., & Wilson, D. (2014). Wong's nursing care of infants and children. Elsevier Health Sciences.
  • Mayo Clinic. (2022). Down Syndrome. Visit Source.
  • National Down Syndrome Society (NDSS). (n.d.a). About Down Syndrome. National Down Syndrome Society. Visit Source.
  • National Down Syndrome Society (NDSS). (n.d.b). Employment and volunteer work. National Down Syndrome Society. Visit Source.
  • NHS inform. (2024). Down’s syndrome - Illnesses & conditions | NHS inform. NHS Inform. Visit Source.
  • National Inclusion Project. (n.d.). What Is Inclusion?
  • U.S. Department of Education. (2021). Individuals with Disabilities Education Act (IDEA). Visit Source.
  • U.S. Department of Justice. (2020). A Guide to Disability Rights Laws. Visit Source.