Caregivers of People with Schizophrenia Need Support, Not Stigma


Despite growing awareness of mental illness nationally, serious mental illnesses, such as schizophrenia, continue to be associated with significant stigma – not just for the person directly affected, but also for the caregiver. 1,2 Caregivers act as advocates, collaborate with treatment team members and often are the main support in the daily life of their loved one with schizophrenia. 3,4 However, results of a recent survey show that caregivers have experienced emotional burden and social isolation as a result of caring for their loved one.
The results were collected as part of a recent online survey conducted in the U.S. between January 20 and 27, 2014 by Harris Poll on behalf of Otsuka America Pharmaceutical, Inc. and Lundbeck among 302 unpaid caregivers to adults with schizophrenia.
“Caring for a loved one with schizophrenia has considerable challenges because of the stigma associated with the disease.5 Many people don’t understand schizophrenia and they may fill those gaps with fear.5,6 It’s a unique caregiving experience in that sense.” said Randye Kaye, mental health advocate, actress and author of Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope. Kaye is the primary caregiver for her son, who was diagnosed with schizophrenia about 12 years ago. Her book is a memoir of her experience as a mother and caregiver to her son, from the onset of his battle with schizophrenia along the hopeful road to managing his disease.
Stigma May Lead to Challenges in Finding Support
Results from the survey suggest that caring for someone with schizophrenia can be associated with significant challenges. Of caregivers surveyed, 79 percent said their loved one has experienced isolation and 57 percent said they have experienced isolation as a result of their loved one’s schizophrenia. Sixty percent said they feel it may be easier to care for someone with a physical disease, such as heart disease or cancer, than it is to care for their loved one with schizophrenia.


Thank you for posting this. This article hits very close to home.


People need to lose their fear of schizophrenia and understand it is an umbrella term for a wide range of schizoid affective disorders and degrees of acute symptoms. Unfortunately the word evokes fear as you say, in many people who have not had any personal dealings with the illness. Yet, they may well have experience and connections/relatives suffering from other mental challenges like addiction/depression/agoraphobia etc. Somehow, these are less scary YET statistically, there is no proof that schizophrenics cause any more social “trouble” than alcoholics, addicts etc such is the deeply rooted social stigma and fear of schizophrenia. As a carer for a shizophrenic I have changed my position from hiding my son’s condition to discussing and explaining it whenever I can to anyone I think might understand. It does help that my work is in mental health. BUT I still have a tremendous amount of stress and personal (…hate this word…) sacrifice as his sole carer. It’s interesting to me that people will sympathise with the sufferer once they UNDERSTAND…yet the actual daily emotional roller coaster of the prime carer is far less easy to understand unless someone has themselves personally cared for a person at home 24 hours a day. Just some random thoughts. Thanks for your stats, it’s so good not to feel alone with this.


I have never felt so son had a psychotic breakdown a little over a year ago. My mother wants it to be a secret. I miss my old son but try to help my new son. He went from the hospital to a group home that was horrible. Our nation should be ashamed they are not regulated. The only doctor he saw was on tv. I ran up credit card bills going to see him. It was sad seeing other patients with no family support. I had to move him from Alabama to Georgia to get a good doctor. He lives with my 78 year old mother to get a good psychiatrist. He can talk now. I could not get information to help explain voices to me so I could help him. When your child has cancer you have grief because they hurt. Guess what? Parents of children with mental illness have grief also. I am a widow and worked everyday to pay bills from his illness. If it was cancer church friends would be supportive. I am trying to find a job in my hometown to help my son and mother. I am so tired. I have to fake being upbeat and happy on my job and I do. My son almost died from a medicine build up and my boss asked when will you be back at work and I never miss work. I took loans to get his medicine before we could get disability. Some days I want to give up. I remember I can’t he needs me. His dad committed suicide. My mother is getting old. I had another family member die with cancer. It was much easier. I have learned a new hell.


I think this is true for any mental illness, I’ve found people know something is wrong, but it doesn’t have a name, but yes, once you say Sz, then they freak out.


I want to see how my son is daily and can’t find a job near him. I now feel depressed and angry. You should not have to move to another state to get a doctor not on tv. This is so unfair. My mother is having to help me and she is demented. She is sweet but this does not seem fair.