The annual convention of the U.S.-based National Alliance on Mental Illness (NAMI) just finished educating its 1700 participants on the latest research relevant for people living with severe mental illnesses. Both the opening and closing events focused on the important developments in cognitive remediation strategies for people with psychotic disorders.
Dr. Thomas Insel, director of the National Institute of Mental Health (NIMH), detailed for us future possibilities for people in the earliest stages of psychosis to receive cognitive retraining that could prevent full onset of this life-altering disorder.
Longtime Harvard University researcher, Dr. Matcheri Keshavan, explained the Cognitive Enhancement Therapy (CET) programs he has helped develop. He included presentations from two middle-aged people with schizophrenia whose lives have been dramatically improved following their experiences with CET.
These presentations aren't just updates. Speakers at NAMI know that this powerful organization, which was started by family caregivers and now has over 1,200 affiliates, is responsible for key improvements in mental health care in the United States. NAMI successfully lobbied Congress to order insurance companies to fund care for mental illnesses. These families have also pioneered numerous housing, vocational, and educational opportunities for people with severe mental illnesses.
And what's the situation in Canada?
Families here certainly aren't being led to advocate for the most helpful education programs for people living with psychotic disorders. In fact, they often receive messages that add to their confusion about the state of knowledge about these illnesses. My last article explored the beliefs of some of the panelists at the Mental Health Commission of Canada's (MHCC) recent anti-stigma conference who were selected to speak on the situation of families.
Panelist Karyn Baker writes about the ways she believe families are "a hindrance in their relative's recovery." In her training program for families, she wants to free them from "the limiting idea that mental illness is a disease and must be treated with medication...." Baker's fellow panelist, the controversial CEO of the Schizophrenia Society of Canada (SSC) and MHCC Board Member Chris Summerville actually blames families for their members not getting treatment.
This panel could have educated the conference audience about the lack of insight which is the real reason so many people with psychotic illnesses don't seek or consent to treatment. They could have publicized the recent groundbreaking French research that has finally identified the part of the brain involved in this lack of awareness.
Lack of awareness of being psychotic, or anosognosia, creates havoc for people with psychotic illnesses and the families who love them. An inside look at anosognosia is explored in a recent National Post article by memoirist Erin Hawkes. Hawkes experienced years of involuntary treatment before she finally understood that anti-psychotic medications could provide the foundation for a return to a sane, stable, and productive life.
Research demonstrates that when people receive good psycho-education about their illnesses, they are more likely to continue to take the medications they may not otherwise understand they need. Current programs being used in Vancouver to educate people about how to manage their illnesses aren't including curriculum about this dangerous symptom.
Only when people are no longer actively psychotic can they benefit from the education provided in cognitive remediation programs. These programs address the predictable cognitive losses that NIMH describes as the major cause of the ongoing disability that impedes many people with schizophrenia.
Progressive psychosocial rehabilitation programs have long recognized these cognitive losses and struggled on a grassroots level to respond. Douglas College in Vancouver's Lower Mainland each year offers a course for people whose education has been interrupted by severe mental illnesses. This course, in which people relearn how to learn, is funded by both the Fraser and Vancouver Coastal Health authorities.
Knowing that these kinds of efforts would be bolstered if they had national support, some of us have requested for the past two years that the MHCC's Knowledge Exchange Centre (KEC) become a hub for gathering information about cognitive remediation research and relevant programs. The KEC advertises itself as being the means through which Canadians can share information about mental health issues. The public is even encouraged to write the KEC to suggest meaningful topics. However, the KEC continues to ignore cognitive remediation.
What explains this puzzling lack of response?
Readers' comments to my earlier HuffPost articles offer some clues. Those who adhere to the beliefs of the "psychiatric survivor" movement do not want psychotic disorders to be thought of as brain disorders. This explains the comments that accuse me of insulting people diagnosed with schizophrenia by discussing cognitive problems. Examining the commonly acknowledged cognitive challenges, according to these readers, promotes stigma.
As a secondary school teacher, I am grateful that the people advocating for students with learning disabilities and other special needs have often been successful in their efforts. These students wouldn't have been helped by well-meaning people who didn't want to call attention to their difficulties out of fear of stigmatizing them.
With appropriate support from groups like the Mental Health Commission of Canada, the long neglected cognitive challenges of many people with schizophrenia could be addressed. We might finally even get the university special education departments to notice the ignored educational needs of this population.
Neuroscientists at NAMI wanted to educate families about the incredible potential of the brain's neuroplasticity to improve the lives of people with psychotic disorders. They want families to continue to advocate for the kinds of programs that offer the best help for people burdened with these often devastating illnesses.
In Canada, however, families and many consumers of mental health services who understand the need for these kinds of programs have no place to look for support. We can only inform the public who have everything to gain by promoting science-based recovery from severe mental illnesses.