Lets Talk about Down Syndrome & Family Mental Health. Yona Lunsky, PhD CPsych October 28, 2017

Transcription

1 Lets Talk about Down Syndrome & Family Mental Health Yona Lunsky, PhD CPsych October 28, 2017

2 What is mental health?

3 Whose mental health are we talking about?

4 Whose mental health are we talking about?

5 Why talk about it?

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7 Having a child with a disability makes you instantly and constantly vulnerable. In a world where we are supposed to be strong, feeling vulnerable is very uncomfortable. Sue Robins

8 What does the research tell us? Parents of children with DS have more stress than parents of kids without disabilities Every parent is unique Caregiving is influenced by everything around us Our mental health is shaped by more than just our caregiving role

9 Pay attention and be prepared.

10 Family Distress Scale (Weiss & Lunsky, 2010) Please rate where you fall on this continuum of distress from 1 to 10: 1 Everything is fine, my family and I are not in crisis at all 2 Everything is fine, but sometimes we have our difficulties 3 Things are sometimes stressful, but we can deal with problems if they arise 4 Things are often stressful, but we are managing to deal with problems when they arise 5 Things are very stressful, but we are getting by with a lot of effort 6 We have to work extremely hard every moment of every day to avoid having a crisis 7 We won t be able to handle things soon. If one more thing goes wrong - we will be in crisis 8 We are currently in crisis, but are dealing with it ourselves 9 We are currently in crisis, and have asked for help from crisis services (Emergency room, hospital, community crisis supports) 10 We are currently in crisis, and it could not get any worse

11 What depletes you?

12 What nourishes you?

13 Suggestions for families

14 6 SUGGESTIONS Mental health promotion and early treatment Trauma informed care Build capacity of mental health care providers Include them in our intervention research Remember that overlap with physical health Invest in families and paid caregivers Commit to reducing medications

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17 6 SUGGESTIONS Mental health promotion and early treatment Trauma informed care Build capacity of mental health care providers Include them in our intervention research Remember that overlap with physical health Invest in families and paid caregivers Commit to reducing medications

18 Part 2: Trauma-informed practice for diverse client groups and in specific settings Diverse groups 8. Working in a trauma-informed way with clients who have a developmental disability Anna M. Palucka and Yona Lunsky

19 6 SUGGESTIONS Mental health promotion and early treatment Trauma informed care Build capacity of mental health care providers Include them in our intervention research Remember that overlap with physical health Invest in families and paid caregivers Commit to reducing medications

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21 - Healthcare for All, 2008

22 7 SUGGESTIONS Mental health promotion and early treatment Trauma informed care Build capacity of mental health care providers Study MH and DS family interventions Remember that overlap with physical health Invest in families and paid caregivers Commit to reducing medications

23 6 SUGGESTIONS Mental health promotion and early treatment Trauma informed care Build capacity of mental health care providers Study MH and DS family interventions Remember that overlap with physical health Invest in families and paid caregivers Commit to reducing medications

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25 6 SUGGESTIONS Mental health promotion and early treatment Trauma informed care Build capacity of mental health care providers Remember that overlap with physical health Invest in families Commit to reducing medications

26 Contents What is dual diagnosis Recognizing dual diagnosis Treatment Crisis and emergency How dual diagnosis affects families Self-care for family members Resources Websites Books

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29 Support and Information

30 Mindfulness

31 Mom to Mom ACT for mothers

32 What parents tell us. I decided I needed to find help, so I looked for it. As men, I believe it can be hard to put aside our pride and recognize that we do not have all the answers and admit we need help. Yet sometimes (most of the times) that is the best way. Marcelo Gabriel Guijarro Save some love for yourself. It is so important to connect with other parents. If not in person, at least through social media. Caregiving can be very lonely. I had to find a new place to belong and that wasn t with my old friends. Sue Robins

33 What about growing up in Holland? The sibling experience When I explained that having a brother might change the relationship, my daughter disagreed saying No, I hate both my brothers equally.

34 Siblings Most of the trouble my parents did not know about because I didn t get caught. I did my own thing away from home every day to escape what was going on around me. Everything was all about Anna, all of the time. My mom didn t notice us anymore unless we did something unfavorable. I worry especially because certain diseases pose a greater than average risk to people with Down syndrome, and I can t bear to think of my brother so fragile again. I also worry about my parents because of how much my brother needs them. I know we all love this journey in our family, but it can also take its toll on my parents when there are so many questions yet to be answered and so many resources we still have yet to find.

35 On being a super sister These conditions are ripe for the emergence of the super sister.' I am a super sister. I am not the only one. There are lots of us out there. Super brothers, too. As a super sister I have taken on this caregiving role with my whole heart and then some. Over the last year I ve learned that even the mightiest of us super sisters can t make pain go away, do everything right or be wholly responsible for creating a good life for my brother. I realized that being super sister had been all about me. He doesn t need super sister. He just needs me. And only sometimes. This letting go is something I m trying to figure out, and I don t think I ve quite got it yet. Helen Ries

36 A Problem to be Solved, or a Sunset to be Appreciated?

37 H-CARDD is a research partnership to improve the health of Ontarians with developmental disabilities. Visit our website to find health care tools for clinicians and patients, as well as to watch our health care practice videos. Follow us on twitter for news and research updates. Please contact us for more /HCARDD hcardd@camh.ca (416) ext