Published on March 21st, 2017 | from CAMH

Setting the stage for discussions around Down syndrome and mental illness

By Dr. Yona Lunsky, Clinician Scientist in Adult Neurodevelopmental Services and Director of the Health Care Access Research and Developmental Disabilities (H-CARDD) Program

Did you know that as many as half of those with Down syndrome will experience a mental health problem at some point in their life?

I thought it was appropriate that we celebrate World Down Syndrome Day here at CAMH, by educating mental health providers and families about the importance of mental health for those with Down syndrome. Individuals with Down syndrome, like everyone else, are at risk for mental health issues – in fact, there’s a higher prevalence of it. Unfortunately, mental health providers may not feel equipped to support them which can lead to missed opportunities for intervention.

The National Down Syndrome Society provides some excellent information about which mental health issues are most common, and the importance of ruling out potential medical contributors that are common in Down syndrome. If left untreated, these common symptoms can appear to be psychiatric or behavioural difficulties. For example, when screening for depression, one always has to first assess for hypothyroidism, which occurs in many adults with Down syndrome. In the same way, lack of energy and fatigue may be related to sleep apnea, another more common condition.

Many of us are aware that dementia is likely to occur in adults with Down syndrome, and at a younger age than other adults. But we might not realize that other difficulties can occur as well, including depression and anxiety in adolescence and adulthood. The term “diagnostic overshadowing” refers to our tendency to dismiss psychiatric symptoms in someone with Down syndrome, thinking instead that they are just part of their genetic condition. When we do this, we deny people treatment for difficulties that can and should be treated.

Art imitates life

To help us understand more about why mental health is important to those with Down syndrome, I met last week with 3 professional actors from the RARE Theatre Company as they geared up for rehearsals for their production Wildfire, premiering in May at the Young Centre for Performing Arts.

We talked about what mental health means to them, and how it relates to their newest production. They spoke about challenges they have had with anger, depression and anxiety and the importance of getting help when they need it. According to Andreas Prinz, “people who have anxiety like me, they can’t see how they feel inside, they feel vulnerable inside, they can’t help themselves.”

Dylan Harman talked about the balance of being able to release intense emotions, but also finding ways to calm down, “If you are full of emotion, going to break down, it can be good to let it out. But most of the time it can also be a bad thing  if you are unstable.” He has learned to deal with his emotions, by finding “a happy place in your head that you can be alone in solitude…”

They talked about loss, love, exploitation, stigma, and bullying. They also spoke about ways they have coped with these painful experiences, through talking to someone they trust, important role models in their lives, people who inspire them, connecting with family and friends, and in some cases individual counseling or group therapy. Andreas proudly explained that “I am getting help… with people with same disorder and problem, getting help to accept that I can accept my mom’s death, and deal with anxiety. “

The show must go on

RARE Theatre Company hopes to use their play to educate others about Down syndrome. As Krystal Nausbaum explained, “We are teaching them of what we are facing of having Down syndrome and teaching them that other people that have disabilities of what happened in the past and also teaching them that people like us face this… So we are teaching the audience of standing up for our own rights, with our own voice, to be heard, with all the cast that has Down syndrome performing to this audience, by sending the message on heavy topics.”

The play also talks about the importance of friendship and love, and what can happen when people are denied the right to love who they want because of their disability.

Listening to Krystal, Dylan and Andreas reminded me that adults with Down syndrome are as vulnerable as the rest of us to mental health issues, and that our mental health system needs to be ready to support them. If we don’t talk about mental health with those with Down syndrome, they may not develop the language or feel that they have the permission to talk about it themselves when they are starting to experience difficulties. The insightful individuals we met with understood the importance of talking about mental illness, addiction and mental health. They want to be able to help others through sharing some of their experiences both on stage and off.

Learn more about dual diagnosis

To learn more about the dual diagnosis of developmental disabilities like Down syndrome and mental illness, read the dual diagnosis information guide, or review some of these helpful portico resources.

You can also watch some of our teaching videos for clinicians and for patients and families, developed by the H-CARDD Program, featuring actors with Down syndrome.

In this video, another member of the RARE Theatre Company, Nick Herd, teaches health care providers how to support someone with Down syndrome in the emergency department In this video on working with patients and families, he reminds us: “Let’s create a world where everyone belongs

Francie Munoz teaches health care providers about how to carry out blood work with an anxious patient in one video, and she teaches other people with developmental disabilities about how to reduce anxiety when having to get through an invasive medical procedure in another one.

Yona Lunsky will be speaking about mental health and Down syndrome at the Canadian Down Syndrome Society Annual Conference in May 2017.

Wildfire will be playing from May 2 to May 20 at the Young Centre for the Performing Arts.


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