Yuval—thanks for raising this important and neglected issue.
For every one person with a serious mental illness, such as severe depression, schizophrenia, PTSD, severe autism, intellectual disability, or Alzheimers, there are often several concerned carers who suffer alongside them—often including their parents, siblings, spouses, children, and friends.
In many cases, the day-to-day suffering of carers (e.g. a middle-aged parent whose young adult child is slipping into paranoid schizophrenia) can actually be as severe, or more severe, than the suffering of the person with the mental illness. It’s utterly heartbreaking to watch, helpless, as a loved one goes psychotic, ruins their life, and threatens the lives of people around them.
Yet the carers often suffer in silence, and get very little support. Indeed, mental health care systems in many countries actually prohibit carers from having any access to important psychiatric records regarding the loved ones they’re caring for—e.g. in the US (given HIPAA regulations), parents are often not authorized to know whether their adult child is actually filling their prescriptions for anti-psychotic medications, or going to therapy—even if failing to take the medications puts the parents at immediate risk of violence.
The National Alliance for Mental Illness (NAMI) in the US runs excellent outreach and education programs for carers of people with mental disorders. I don’t know if they have good randomized controlled trial data about the long-term efficacy of their programs. But, speaking from personal experience, the NAMI programs can, at least, provide some emotional and practical support for carers.
Thank you very much :) If you have knowledge or access to influental/important articles or research on the subject matter, would love to hear about it :)
Yuval—thanks for raising this important and neglected issue.
For every one person with a serious mental illness, such as severe depression, schizophrenia, PTSD, severe autism, intellectual disability, or Alzheimers, there are often several concerned carers who suffer alongside them—often including their parents, siblings, spouses, children, and friends.
In many cases, the day-to-day suffering of carers (e.g. a middle-aged parent whose young adult child is slipping into paranoid schizophrenia) can actually be as severe, or more severe, than the suffering of the person with the mental illness. It’s utterly heartbreaking to watch, helpless, as a loved one goes psychotic, ruins their life, and threatens the lives of people around them.
Yet the carers often suffer in silence, and get very little support. Indeed, mental health care systems in many countries actually prohibit carers from having any access to important psychiatric records regarding the loved ones they’re caring for—e.g. in the US (given HIPAA regulations), parents are often not authorized to know whether their adult child is actually filling their prescriptions for anti-psychotic medications, or going to therapy—even if failing to take the medications puts the parents at immediate risk of violence.
The National Alliance for Mental Illness (NAMI) in the US runs excellent outreach and education programs for carers of people with mental disorders. I don’t know if they have good randomized controlled trial data about the long-term efficacy of their programs. But, speaking from personal experience, the NAMI programs can, at least, provide some emotional and practical support for carers.
Thank you very much :) If you have knowledge or access to influental/important articles or research on the subject matter, would love to hear about it :)