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Sleep and Neurological Problems : Adults with Intellectual Disability

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Q: What is intellectual disability?
A: “Intellectual disability” (ID) is used to describe a person over the age of 5 who has significantly below-average general intellectual functioning. The person must also show deficits in day-to-day behavior that have become obvious between the ages of 1 and 18 years. Intellectual function is assessed by intelligence tests to give an intelligence quotient (IQ). An average IQ is considered to be 100, while a below-average IQ is one below 70. However, this assessment alone is not sufficient. Tests of day-to-day functioning may reveal more closely how independent someone is and whether simple tasks need to be done in the context of education, support, and training. About 3 in 100 people have mild or greater (moderate, severe, profound) intellectual disability.
Q: What are the causes of intellectual disability?
A: There are various causes of intellectual disability. About 60 percent of causes of ID are prenatal. These include chromosome errors (such as Down syndrome) and single gene errors, developmental disorders, and intrauterine problems (toxins, infections). Factors that can occur around birth include cerebral damage and hemorrhage. Infections, accidents, and abuse can also contribute to the development of ID. The most common types of ID include autistic disorders, Down syndrome, Prader–Willi syndrome, fragile X syndrome, and familial intellectual disability.
Q: What sleep disorders do people with ID have?
A: Intellectual disability (ID) is common within our society but the needs of people with disability are often overlooked. Caregivers and parents often do not receive the support necessary to look after children, let alone adults, with intellectual disability. The health needs of people with ID are specialized. One aspect of ID that is often overlooked is sleep. People with ID can have primary sleep disorders that can lead to behavioral disturbances and sleepiness just as in those without ID. Sleep hygiene and behavioral changes with regard to sleep can be more challenging to treat in this group of patients, but if successful, can be extremely rewarding as everybody’s quality of life is improved.
Q: Why is sleep important for people with ID?
A: People with ID generally have a large number of other disabilities and conditions to deal with, so a good night’s sleep is essential to their well-being just like anybody else–s. The literature on sleep disturbance in adults with ID is sparse, but the prevalence of sleep disorders in children with ID is up to 4 times higher than in children who are developing normally, which can exacerbate other problems.
Q: How can sleep be impaired in people with ID?
A: Physical problems or disabilities that can cause pain, discomfort, or frustration can lead to impairment of sleep in people with ID. Other factors such as problems with eyesight or hearing, medication effects, epilepsy, and mood disorders can affect sleep in people with ID just like in other people. People with ID can also suffer from all the primary sleep disorders mentioned in Disrupted sleep, such as sleep apnea, narcolepsy, and restless legs syndrome, as well as developing insomnia.
Q: What are the most common sleep disorders in people with ID?
A: The most common sleep disorders in people with ID are insomnia, excessive daytime sleepiness, and daytime napping. Night waking is also very common. In Down syndrome, sleep apnea is very common and often goes unrecognized and untreated. Children with ID, especially with autism, often have problems with settling at night.
Q: How do people with ID report sleep problems?
A: Often people with ID will not directly report a sleep problem and rely on the observations of an astute parent or caregiver to pick up on excessive daytime sleepiness, night time discomfort, or abnormal sleep behaviors. Fatigue can manifest itself in a variety of ways including mood disturbances (depression), aggression, noncompliance with instructions, hyperactivity, self-injury, screaming, and socially inappropriate behavior.
Q: How will a caregiver/parent know that a person with ID has a sleep disturbance?
A: Parents and caregivers often accept sleep disturbances and abnormal sleep patterns in people with ID as part of the person’s condition and do little about it. However, this can result in long-term harm to the person’s health and impair quality of life. If you witness abnormal behavior during sleep such as snoring, breathing pauses, and restlessness, it is important to bring it to the attention of the doctor or health professional involved in the care of the person with ID.
Q: Can mood disorders disrupt sleep in people with ID?
A: Depression and anxiety can lead to sleep disturbances and cause a vicious cycle of problems, so it is important these are recognized and reported. People with ID often show behavior problems when in reality they may have an underlying medical problem causing their distress.
Q: Can blindness make sleep patterns worse in someone with ID?
A: Yes, depending on how severe the blindness is. In people who do not have any light transmission to their suprachiasmatic nucleus (a small cluster of light-responsive cells), there can be significant problems with circadian rhythms and sleep. Treatment includes behavioral measures as outlined in Sleep promotion, especially keeping a regular bedtime and waking time. Melatonin has proven to be a very effective treatment in these disorders. If you think someone has sleep disturbances due to blindness, discuss this with his or her doctor.
Q: Do people with Down syndrome have sleep apnea?
A: Sleep apnea is a common problem in people with Down syndrome. The reported prevalence ranges from 31–63 percent in children with Down syndrome. The prevalence in the adult population with Down syndrome is currently unknown but is also presumed to be high.
Q: Why do people with Down syndrome get sleep apnea?
A: There are a number of physical attributes in people with Down syndrome that predispose them to developing sleep apnea. These include a small midface (low-set cheekbones), the tendency to have a small jaw which is also backset, a narrow palate, narrow nasal passages, and a narrow throat. They are more prone to blockage of the nasal passages at birth (this can be fixed at birth and even later in life), a broad skull, small larynx, a relatively large tongue compared to the size of their mouth, enlarged tonsils and adenoids, increased secretions, low thyroid levels, and general floppiness of the muscles. People with Down syndrome also tend to be less active and put on weight very easily, which can predispose them to obesity and result in problems with sleep-disordered breathing at night.
Q: What are the consequences of untreated sleep apnea in Down syndrome?
A: As in everybody with sleep apnea, narrowing of the upper airway during the night can result in prolonged breathing pauses, which can cause blood oxygen levels to drop with concurrent rise of carbon dioxide. This can worsen problems such as pulmonary hypertension and may even lead to heart failure. People with Down syndrome have a greater risk of developing heart problems and elevated right heart pressures. The daytime effects of disrupted sleep can also manifest as abnormal levels of sleepiness, learning difficulties, behavioral disturbances, depression, irritability, paranoia, and personality changes. Sleep problems can also worsen cognitive function in these people.
Q: How are sleep disturbances managed in an adult with ID?
A: If you think that someone with ID may have a sleep problem resulting in a disturbed sleep-wake cycle, excessive daytime sleepiness, or changes in behavior patterns or mood, then you and the person with ID must make the doctor aware of this. Primary sleep disorders can be assessed in a sleep laboratory or equipment may be available to take home if the person with ID is more comfortable with this–something you need to discuss with your sleep specialist.
Q: Can behavioral treatments help?
A: Behavioral treatments are available and are highly effective (examples include reward systems and desensitization). They may require a bit of concentration and persistence on behalf of the caregiver to implement at times, but, when successful, can be extremely rewarding for all concerned. However, the most important aspect of treating a sleep disorder or behavioral disorder due to poor sleep lies in recognizing it.

Myth or truth?

Myth

“People with intellectual disability can’t be treated for sleep problems”

Truth

This is untrue. Behavioral measures to deal with sleep problems in people with intellectual disability can be very effective. The treatment for primary sleep disorders such as sleep apnea, narcolepsy, or circadian rhythm disorders may be slightly more complex, but can result in enormous improvements in the quality of life and health.

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