Caring for Someone with Schizophrenia
As family caregivers forge ahead and learn more and more about schizophrenia there’s an important characteristic of the disorder to be aware of and to learn how to deal with. It’s called “lack of insight” or “anosognosia.”
What is Anosognosia? How Does it Affect Schizophrenia Treatment?
Anosognosia is often referred to as “lack of insight” or “lack of awareness.” It is not “denial” or a patient being “stubborn” – it’s a symptom based in the brain.
With anosognosia, the affected person may not be able to recognize the signs and symptoms of his or her illness, may not be able to attribute consequences or deficits to that illness, and may, therefore, be unable to understand or recognize that treatment is needed.
This final point – lack of understanding of the need for treatment – is likely the most difficult and consequential aspect of anosognosia for patients and families dealing with mental health conditions like schizophrenia or psychosis for which early treatment and consistent treatment are very important.
Indeed, anosognosia is considered the single most important reason why individuals with psychotic disorders do not take their medications. Since treatment non-compliance is associated with risks for a surge of symptoms that can result in arrest, hospitalization, violence, or worse, anosognosia is a huge contributor to serious non-treatment consequences. It makes sense, when an individual firmly believes he or she is not sick that person will most likely reject any suggestion of treatment.
To make matters worse, without treatment, individuals with psychotic disorders will typically experience effects of the disorder that make it even more difficult for them to comply with their treatment regimens. Lack of compliance with treatment increases risk of relapse and rehospitalization which, in turn, negatively affects recovery.
Exactly how imporant is compliance with pharmacological treatment for schizophrenia, for example?
According to a meta-analysis of 50 years of antipsychotic therapy in people with schizophrenia (from the journal the Lancet, 2012) patients on pharmacological antipsychotic therapy are “less likely to relapse, to need re-hospitalization, or to engage in aggression” and more likely to enjoy “a better quality of life.”
Thus, supporting patients in treatment, with an awareness of the challenges of anosognosia, is critical. When patients with schizophrenia are able to take their prescribed medications as directed, their symptoms of anosognosia can be improved along withtheir other symptoms.
How Common is Anosognosia?
According to the National Alliance on Mental Illness (NAMI), approximately 50% of individuals experiencing schizophrenia have anosognosia and cannot recognize that they are sick and need help. Other sources, including the journal Innovations in Clinical Neuroscience, put the prevalence of anosognosia in schizophrenia patients much higher at 57% to 98%.
- Affects 40% of people with bipolar disorder (NAMI)
- Can accompany major depression with psychotic features (NAMI)
- Affects approximately 58% of individuals living with multiple sclerosis (MS) (Journal of Neurological Sciences)
- Is common with Alzheimer’s and psychosis (Journal of Neurological Sciences)
What Causes Anosognosia?
We constantly update our mental image of ourselves based on how we look, skills we learn, etc. But this updating process is complicated and requires the brain’s frontal lobe to organize new information, develop a revised narrative, and remember the new self-image.
Brain imaging studies have shown that the frontal lobe of the brain can be damaged by psychotic disorders as well as by diseases like Alzheimer’s and dementia. When the frontal lobe isn’t operating at optimally, a person may lose—or partially lose—the ability to update his or her self-image.
Without an update, we’re stuck with our old self-image from before an illness started. Our perceptions feel accurate and when they are challenged by loved ones or others, we conclude that those people are lying or making a mistake. If family and friends insist they’re right, this can lead to frustration, anger, and avoidance.
How Can Anosognosia Be Addressed?
As mentioned above, when patients are able to adhere to their medications for schizophrenia, psychosis, or other mental health disorders, anosognosia — along with other condition symptoms – can be improved. But there are other important forms of treatment necessary, too.
Additional support, according to the journal Innovations in Neuroscience, should include providing patients and loved ones with:
- Education about the condition they are facing (psychoeducation).
- Cognitive-behavorial therapy (CBT) during windows of opportunity when the affected individual is responding to medications, has more awareness of his or her condition, and is therefore more open to care.
- Cognitive-behaviorial therapy (CBT) and psychoeducation during periods of increased risk for treatment noncompliance (such as during the first year of treatment after hospital discharge).
- “15-minute medication checks” from case managers or healthcare providers.
The services mentioned above, aside perhaps from the “15-minute medication checks,” can all be provided via telehealth through MyHealios.
Keep in mind that family caregivers with a loved one who rejects treatment will never win the treatment-compliance-challenge through the strength of their arguments. Much more important and effective are the strengths of their relationships. As soon as a diagnosis of schizophrenia, for example, has been made, family caregivers and loved ones should focus on tactics to ensure optimal treatment compliance for the patient. These tactics can be learned through the psychoeducation and skills training (CBT) mentioned above.
Supportive services like psychoeducation and skills-based CBT can help families to problem solve around compliance issues and improve communications between clinicians, patients and loved ones. They can also help the affected individual to find a new life balance with their illness and to accept the need for treatment and support.
Psychoeducation and CBT are recommended by guidelines from the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA) for caregivers and key family members and are available through in-person through NAMI trainings and remotely (telehealth) through MyHealios. Those participating in a RAISE program should also access to similar services to help address anosognosia and improve treatment acceptance.
What is Psychoeducation and Skills Training (Cognitive Behavioral Therapy)?
Psychoeducation and skills training via cognitive behavioral therapy (CBT) is recommended during the first few months after an initial hospitalization for schizophrenia. Sessions may incorporate patients with their family caregivers or may focus solely on support and skill-building for caregivers, or may toggle between the two as appropriate. To reiterate, SAMHSA considers this sort of support to be an integral part of the treatment regimen for schizophrenia. Unfortunately, too often, family support is very difficult for busy caregivers and patients to access (due to lack of time or lack of trained therapists in a given geographic region). New telehealth programs (health services provided via new technologies such as video conference) can, however, bridge this gap. Learn more about telehealth for schizophrenia provided by MyHealios.
Why are Psychoeducation and Skill Training So Important?
Often, the most successful caregivers, those who are able to most effectively support their loved ones in treatment for better outcomes, are those who have some professional training related to caregiving — in the past or as a direct result of a new caregiving role.
In a previous blog, I mentioned how my uncle received crucial assistance from his wife — a psychiatric nurse. At the onset of his illness, she quickly recognized the symptoms and was able to take my uncle to see a psychiatrist to establish a treatment plan.
There are many similar stories. For instance, in Ireland, the son of a clinic director was diagnosed with schizophrenia. This health professional quickly recognized what was going on in his son and ensured his prompt and careful treatment. The son has since gone on to complete his own medical education. Perhaps you a have a similar story of hope to share?
In sum, caregiving is a role… it’s a job… and all jobs and new roles require some education and training. You don’t needd to go at it alone. If you can find support and the information and skills you need (and we know you can and are here to help, too), then you can find the path to the future for you and yours.
Thank you for taking the time to learn about anosognosia today. By improving understanding of this important mental health symptom, you’re improving the odds that treatment can succeed.