What are the major mental-health-related concerns in people with Down syndrome?
At least half of all children and adults with Down syndrome face a major mental-health concern during their life span. Children and adults with multiple medical problems experience an even higher rate of mental-health problems.
The most common mental-health concerns include: general anxiety; repetitive and obsessive-compulsive behaviors; oppositional, impulsive, and inattentive behaviors; sleep-related difficulties; depression; autism spectrum conditions; and neuropsychological problems characterized by progressive loss of cognitive skills.
The pattern of mental-health problems in Down syndrome varies depending on the age and developmental characteristics of the child or adult with Down syndrome as follows:
Young and early-school-age children with limitations in language and communication skills, cognition, and non-verbal problem-solving abilities show increased vulnerabilities in terms of:
-- Disruptive, impulsive, inattentive, hyperactive, and oppositional behaviors (raising concerns of coexisting oppositional disorder and ADHD) -- Anxious, stuck, ruminative, inflexible behaviors (raising concerns of co-existing generalized anxiety and obsessive-compulsive disorders) -- Self-immersed, repetitive, stereotypical behaviors (raising concerns of co-existing autism or pervasive developmental disorder) and deficits in social relatedness -- Chronic sleep difficulties, daytime sleepiness, fatigue, and mood-related problems (raising concerns of co-existing sleep disorders and sleep apnea)
Older school-age children and adolescents, as well as young adults with Down syndrome with better language and communication and cognitive skills, show an increased vulnerability to:
-- Depression, social withdrawal, diminished interests and coping skills -- Generalized anxiety -- Obsessive-compulsive behaviors -- Regression with decline in loss of cognitive and social skills -- Chronic sleep difficulties, daytime sleepiness, fatigue, and mood-related problems (raising concerns of co-existing sleep disorders and sleep apnea)
Older adults show an increased vulnerability to:
-- Generalized anxiety -- Depression, social withdrawal, loss of interest, and diminished self-care -- Regression with decline in cognitive and social skills -- Dementia
All these changes in behavior often seem to occur as a reaction to (or are triggered by) a psychosocial or environmental stressor -- for example, the death or illness of a loved one, or separation from that person.
Who should you turn to for assessment and treatment of mental-health concerns?
Many families live in areas without a mental-health professional skilled in working with children and adults with Down syndrome. We therefore recommend the approach outlined below for families.
Make a preliminary search in your area for potential providers who have experience in working with children and adults with developmental disorders. This may include asking your primary care provider to recommend providers who indicate an interest in evaluating children and adults with developmental disorders. At your work, the employee-benefits officer who is responsible for your medical coverage may also have a list of appropriate providers. It always helps greatly if you already have a primary care physician who can make referral recommendations (or who has someone in mind who can make an appropriate referral for you). If you have access to the Internet, visit the website for your medical-coverage provider, and search for professionals in your region who indicate an expertise in developmental disorders. Finally, consider calling the local department or case coordinator in your area for additional services that may be available there.
It is always worth having an initial consultation to familiarize the child or adult with the professional and to see if this is a good match for your needs. Such an introductory visit is helpful because it helps the patient with Down syndrome become comfortable with the place and provider; it may also help you get a timely appointment if you have a crisis in the future. Booking an initial appointment is often much more difficult than scheduling later appointments, and booking the first appointment in an acute situation has become increasingly difficult, especially in well-known centers.
Please remember that the ideal mental-health provider skilled in Down syndrome is someone who has knowledge of developmental disorders and who also has had experience in working with children. It's a good idea to first seek a mental-health provider who works in a pediatric medical center or who works in close proximity to a pediatric practice.
In geographic locations with limited proximity to such services, keep in mind that each state in the country has what is known as a University Center of Excellence in Developmental Disabilities (UCEDD), which is part of the Association of University Centers in Developmental Disabilities. Many of these programs have been in existence for more than 30 years and are located in tertiary care centers with interdisciplinary services that include mental-health professionals (child psychiatrists, psychologists, social workers), as well as developmental-behavioral pediatricians. The UCEDD programs can also provide advice regarding referral to adult service in the community and help locate mental-health providers who have expertise in working with people who have Down syndrome.
If it is very important to select a psychiatric provider who has expertise in managing the medication of individuals with developmental disorders, and it's critical that you find someone who has worked in close proximity to a medical practice or agency that serves the needs of individuals with developmental disorders.