Suggestions for parents coping with a complex dual diagnosis

By George T. Capone, M.D., Baltimore, MD

Editor’s note: Dr. Capone is director of the DS Clinic at Kennedy Krieger Institute and staff physician to the Neurobehavioral Disorders Unit. He also serves on the NDSC Board of Directors and co-chairs the Professional Advisory Council.

A complex dual diagnosis refers to someone with an intellectual disability and a neurobehavioral or psychiatric disorder. Most families find a dual diagnosis adds to the stress of family life. Some families are better able to adapt than others. Several different strategies appear to increase the chances for successful adjustment.

  • Recognize and understand your child’s differences. The first step in seeking help is recognizing when help is necessary to address a problem.
  • When necessary, seek informed opinion and consultation.
  • Be able to manage or tolerate uncertainty regarding diagnosis and management. Some conditions are both complex and unique to DS. There may not be a definitive diagnosis, but a working diagnosis may be enough upon which to develop a treatment plan.
  • Be willing to embrace or tolerate the complexity of the “bio-psycho-social-medical model,” which predicts that dual diagnosis is not easily explained simply by linking current symptoms to previous social circumstances, misfortunes or stressful life events.
  • Let go of “simplistic” developmental explanations which are sometimes used as a proxy in place of a truly informed understanding of complex issues. Complex problems rarely have simple answers — time, patience and perseverance may be required to understand what you’re dealing with and to see benefit.
  • Accept a reasonable level of risk (despite uncertainty) in order to achieve some benefit from a treatment plan.
  • When parents work collaboratively with trusted professionals positive change will occur, especially when families are supported in their central role as primary caregivers. When parents and professionals do not work together, care can become fragmented and disorganized.
  • Stay informed, communicate effectively and ask questions. When family members are knowledgeable about their child’s condition and their skills and strengths are supported, they are able to participate or lead the care team effectively
  • Follow through with recommendations, medication monitoring and clinic follow-up.
  • Be able to maintain other interests. It isn’t healthy for anyone when a family’s sole focus is on fixing one member’s problems.
  • Actively seek to simplify life, reduce stress and other commitments as required — without feeling guilty for doing so.
  • Find appropriate support networks — even one or two others — and respite. Families who know how and when to ask for support will have more stamina for the long haul.
  • Just as a flight attendant reminds parents to secure their own oxygen mask first…if applicable, seek mental health treatment for your own depression, anxiety, anger, sleeplessness, relationship challenges and more. Parents who take care of their own needs are better able to take care of their child’s needs.