At least half of all adults and children with Down syndrome will face a major mental health challenge in their lifetime, according to the National Down Syndrome Society (NDSS). The most common mental and behavioral health concerns include:
- General anxiety
- Repetitive and obsessive-compulsive behaviors
- Oppositional, impulsive, and inattentive behaviors
- Sleep-related difficulties
- Autism spectrum conditions
- Neuropsychological problems characterized by progressive loss of cognitive skills.
The mental and behavioral health challenges found in people with Down syndrome depends in part on the age of the person. According to the NDSS, young and early school age children with Down syndrome are more likely to also suffer from symptoms of ADHD, OCD, autism or pervasive developmental disorder, chronic sleep difficulties and mood related problems. Behaviors that relate to these issues, without monitoring and treatment, can slow development and make a child much more difficult to handle in a structured environment like a classroom or group lesson setting.
Once children with Down syndrome become adolescents and young adults, the behavioral health challenges they face shift slightly. While they can still live with obsessive compulsive behaviors, sleep difficulties and social withdrawals, more problems can occur if gone untreated. This age group is susceptible generalized anxiety and depression. Additionally, young adults with Down syndrome can regress and suffer from a decline in their cognitive and social skills (NDSS). Older adults can also suffer from regression, anxiety and depression. In addition, they are more likely to develop dementia than those without Down syndrome.
The NDSS indicates that “these changes in behavior often seem to occur as a reaction to (or triggered by) a psychosocial or environmental stressor, e.g. illness in, separation from, or loss of a key attachment figure.” That means these symptoms may be unavoidable for someone with Down syndrome, regardless of their age.
So how can caretakers or family members tell when someone with Down syndrome is living with a behavioral health issue? This can be a difficult question to answer, as the behavioral and mental health issues that affect people with Down syndrome are often exaggerated versions of symptoms they may already have. According to the report “Mental Health, Behaviour and Intellectual Abilities of People with Down Syndrome,” depression in particular will present itself differently in those with Down syndrome (Down-Syndrome.org). If someone with Down syndrome develops depression, it is “…rarely verbalized and commonly appears as crying, depressed appearance or mood lability. Vegetative symptoms of disinterest with severe withdrawal and mutism, psychomotor retardation, decreased appetite, weight loss and insomnia are prominent. Verbal expression of preoccupation with suicide, death, self-depreciation and guilt is infrequent. Hallucinations may be prominent” (Down-Syndrome.org). Because people Down syndrome often can’t verbalize their conditions or a changes in their perception of the world around them, it is challenging for friends, family or caretakers to detect problems.
Keeping a close eye on the health of someone with Down syndrome gives you a baseline on their state of being. Knowing how that person communicates and how they perceive and interact with their surroundings can make identifying major changes much easier. Making sure that they see their primary care doctor regularly can make a huge difference too so that symptoms can be identified as early as possible.
In order to differentiate between a behavioral health issue and symptoms of a medical issue, doctors will run a series of baseline tests. Frequently, the doctor will perform thyroid-function tests, evaluate sleep-related difficulties, determine underlying causes of bowel-related difficulties and evaluate for hearing and vision problems, anemia and acid reflux (Parents.com).
If a behavioral health issue becomes apparent, a specialist might have to get involved. One easy way to find a provider who specializes in Down syndrome is to check the NDSS website, which has a national database of providers. However, as the site points out, a specialist is not necessarily required to assist an individual with Down syndrome. What is more important than finding a specialist is clear lines of communication, consistent visits and honesty between you, the doctor and your loved ones. According to NDSS, “The most important thing is that the doctor is willing to learn about the condition and collaborate with the family and individual with Down syndrome.”
Identifying a behavioral or mental health issue in someone with Down syndrome can be especially difficult, as that person may not be entirely capable of communicating their feelings or change in mood. That is why special attention to their habits and activities is essential and regular visits to the doctor. If you care for someone with Down syndrome and have concerns about their mental health, talk openly with their doctor or find a provider listed on the NDSS provider directory.
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