The Fatal Five in IDD: Aspiration’s Dangers and Key Interventions

Originally known as the Fatal Four (which included aspiration, dehydration, constipation, and seizures), experts in the field of IDD care have identified sepsis as another serious condition for this population. For this reason, the nomenclature has changed to the Fatal Five.

For those with intellectual and developmental disabilities (IDD), aspiration and the other members of the Fatal Five conditions pose a serious threat to their quality of life and, in some cases, can be deadly.

To provide the best support and care possible, direct support professionals (DSP) must learn the signs and symptoms of aspiration and what to do if aspiration has occurred. To help, we’ll review what aspiration is, how it manifests in individuals with IDD, and interventions you can use.

Prevalence of aspiration among individuals with IDD

Aspiration occurs when a person accidentally inhales particles into their airway. In the IDD population, those particles are most commonly foods, beverages, or bodily fluids such as saliva or vomit. Aspiration is a major medical concern because it may lead to pneumonia, infection, pulmonary edema or other issues.

Common medical and behavioral factors that make an individual more likely to aspirate include:

  • Dysphagia, or difficulty swallowing
  • Difficulty controlling head or neck muscles
  • Mobility limitations that prevent sitting up straight
  • GERD, or Gastroesophageal reflux disease
  • Eating too quickly or putting too much food in one’s mouth
  • Dental problems that prevent adequate chewing
  • Anatomical variation such as a small airway or a large tongue

Some of these factors, such as eating too much too quickly or general mobility limitations, are common among those with IDD. Other factors may be disability specific. For example, individuals with cerebral palsy (CP) may have difficulty swallowing or controlling their head and neck due to the impact of CP on their muscle tone.

Aspiration risk in individuals with Down syndrome

Individuals with Down syndrome (DS) are at high risk for dysphagia-related aspiration due to the structure of their esophagus and low muscle tone. One study conducted on the risk of aspiration among people with DS found that up to 85% of participants experienced a heightened aspiration risk during swallowing evaluations.

Further, as individuals with DS live longer due to improved services and advances in medical care, they may enter a second high-risk population: adults with dementia. People with DS are at a greater risk for Alzheimer’s disease at an early age. About half of individuals with DS will experience dementia in their 60s, and the risk increases with age.

Alzheimer’s disease is likely to cause or increase some of the previously mentioned risk factors for aspiration, such as difficulty chewing and swallowing food or a general loss of awareness. As a result, a person who has both Down syndrome and Alzheimer’s disease is likely to be at a very high risk of aspiration. Caregivers or guardians should be sure to ask the individual’s doctor about preventive measures, including a swallow study and dietary changes.

What are the symptoms of aspiration?

It’s not always obvious when someone is aspirating. Generally, any incident involving choking on food or drinks — “going down the wrong pipe”— could indicate aspiration. However, aspiration can happen without any visible choking.

Individuals who have aspirated may complain of feeling short of breath or that they have something stuck in their throat. However, many individuals with IDD are not able to self-report, so they rely on observant support professionals to recognize signs of aspiration. DSPs should be aware of the following signs:

  • Gagging/choking during meals
  • Persistent coughing during or after meals
  • Irregular breathing, turning blue, rapid breathing
  • Intermittent fevers
  • Chronic dehydration
  • Unexplained weight loss
  • Vomiting after meals
  • Drooling during meals
  • Wheezing or gurgling sounds from the throat
  • Feeling pain when swallowing or a feeling that something is stuck in the throat
  • Making unusual head or neck movements while swallowing

These signs do not always indicate aspiration. However, for individuals in high-risk categories or individuals who have a history of aspiration, they may be the first clue that something is wrong.

Other signs of aspiration may come around during mealtime. For those unable to self-report, be on the lookout for the following behaviors when it’s time to eat:

  • Eating slowly
  • Fear or hesitancy to eat
  • Refusing food and/or liquids
  • Food and liquid falling out of the person’s mouth
  • Eating in odd or unusual positions, such as throwing head back when swallowing or swallowing large amounts of food rapidly
  • Refusing to eat except from “favorite” caregiver

What to do if you suspect aspiration

Any choking incident can put someone at risk for aspiration. If someone chokes, encourage them to spit out any food or beverage remaining in their mouth. If someone is coughing, encourage them to keep coughing, as this may clear the material from their airway. Avoid giving more food or drink until they have returned to their baseline. Even then, it is impossible to see if someone has aspirated or if the aspirated particles reached their lungs.

When aspiration occurs, many people with IDD have difficulty identifying or reporting symptoms. Signs that aspiration has happened may not be visible until after the fact and may appear to be unrelated, so it often goes undetected.

Monitor anyone who chokes for potential signs of aspiration. High risk individuals, individuals who choke multiple times, or anyone who shows the signs of aspiration should be evaluated by a medical professional.

Complications

The most common complication from aspiration is aspiration pneumonia, which accounts for up to 15% of pneumonia cases contracted outside of hospital settings.

Although many of us have experienced aspiration – think about the last time you swallowed something wrong – we don’t always contract pneumonia. People with healthy digestive and respiratory systems are less likely to contract pneumonia after aspirating. Unfortunately, the same people who are at risk for aspirating are also often at risk for contracting pneumonia as a result.

Signs of pneumonia include the following:

  • Chest pain
  • Shortness of breath
  • Wheezing
  • Fatigue
  • A blue tinge to the face or lips
  • Cough, especially involving bloody or green sputum
  • Bad breath
  • Difficulty swallowing
  • Perspiration
  • Fever

Complications from aspiration can develop almost immediately or may take several days. Any of these signs after a known aspiration event, or in a person who is at high risk for aspiration, should be evaluated by a medical professional.

Medical or therapeutic interventions

If you observe that someone seems to be having a hard time eating or swallowing, or if you are otherwise concerned about their risk for aspiration, be sure to raise your concerns with a nurse or the individual’s treatment team.

Additional prevention measures to consider:

  • Treat esophageal spasms, such as those caused by severe acid reflux.
  • Address dental problems to ensure they can chew food properly.
  • Seek out a swallow study to help identify the level of aspiration risk a person has. A licensed speech therapist typically conducts this type of evaluation.
  • Recommend an occupational therapy assessment to identify adaptive equipment to help them eat more comfortably and with lower risk.
  • Consider a modified diet, such as mechanically soft or puree diet, for individuals with high risk of aspiration. This is at the discretion of the speech therapist, nutritionist, and physician.
  • Use a thickener in beverages. This may also be at the discretion of a speech therapist, nutritionist, and physician.
  • Recommend speech therapy to potentially improve a person’s control over their tongue and throat muscles.
  • Evaluate the use of medications such as sedatives, opioids, and muscle relaxers, which can impair a person’s ability to swallow.
  • Address eating too much or too quickly using behavioral interventions.
  • Review the potential for significant medical intervention such as surgery, oral suctioning, or a feeding tube, as certain severe cases my require such measures.

Final thoughts on the Fatal Five

By knowing these tips, you will be better equipped to prevent aspiration and respond if it happens.

DSPs and other caregivers need to know how aspiration and the rest of the Fatal Five – dehydration, constipation, sepsis, and seizures – interact and potentially cause other serious health problems. Some of the best ways to keep the Fatal Five from claiming more lives is education and prevention.

To learn more about the Fatal Five, you can read our other posts on the topic here:

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Jordan Baker

Content Marketing Manager, Relias

Jordan Baker is passionate about e-learning and helping learners achieve their goals. At Relias, he works with subject matter experts across disciplines to shape healthcare content designed to improve clinical practice, staff expertise, and patient outcomes.

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