How do you help a person with an intellectual disability achieve a higher quality of life?
Providing support, companionship, and dedicated, compassionate care can go a long way, but the Fatal Four can destroy any foundation you work to build. Dehydration, constipation, aspiration and seizures make up the Fatal Four. These conditions have the potential to severely impact a person’s quality of life and, in some cases, can be deadly.
Prevalence of Aspiration Among Individuals With IDD
PJ is a man with Down syndrome who lives in a group home near a major university. He’s always loved college sports and never misses a chance to root for his team. Basketball is his favorite, and whenever the “big game” is on, he dresses from head to toe in team colors and cheers from the comfort of his living room.
Tonight, though, PJ isn’t watching the game. He’s on a ventilator in the hospital with a severe case of pneumonia. It isn’t clear yet if he’s going to be okay.
This all started a few days ago, when PJ choked while drinking a soda. His direct support professional (DSP) didn’t know it at the time, but PJ had aspirated.
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
- Impaired consciousness or awareness
- 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 across the Intellectual and Developmental Disability population. 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 up to 84.6 percent 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:
- Sudden coughing, wheezing, or hoarseness
- Changes in breathing patterns
- Regular coughing or sneezing while eating
- Gurgling sounds or voice after eating
- Excessive throat clearing
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 you have that something is wrong.
What to Do If Aspiration Is Suspected
Any choking incident can put someone at a risk for aspirating. 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 from Aspiration
The most common complication from aspiration is aspiration pneumonia, which accounts for up to 15 percent of pneumonia cases contracted outside of hospital settings, reports Healthline.
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
- A blue tinge to the face or lips
- Cough, especially involving bloody or green sputum
- Bad breath
- Difficulty swallowing
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.
- A swallow study can help identify the level of aspiration risk a person has. A licensed speech therapist typically conducts this type of evaluation.
- An occupational therapy assessment may identify adaptive equipment to help them eat more comfortably and with lower risk.
- Modified diets, such as mechanically soft or puree diet, may be necessary 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.
- Speech therapy may 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.
- Behavioral interventions may address eating too much or too quickly.
- In severe cases, individuals may require more significant medical intervention such as surgery, oral suctioning, or a feeding tube.
Final Thoughts on the Fatal Four
Remember PJ? He is recovering from his bout with pneumonia and is looking forward to watching this weekend’s game. Now his support team knows a lot more about aspiration. They know that PJ is at risk for it happening again, so they have a plan to help him stay safe and healthy.
Someone you work with is probably also at risk. 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 Four – dehydration, constipation, and seizures – interact and potentially cause other serious health problems. The only way to keep the Fatal Four from claiming more lives is education and prevention.
Additional Posts About The Fatal Four
The Fatal Four in the Intellectual and Developmental Disabilities Population
There are four major health issues commonly linked to preventable deaths in people with intellectual and developmental disabilities who live in congregate or community-based settings. This fact sheet outlines some of the signs and dangers of the Fatal Four that everyone who works with people with IDD should know.
Download the fact sheet
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