The Devastation of Anosognosia from a Mothers Perspective
ANOSOGNOSIA…. means Lack of Insight. You need to know about it.
Anosognosia is a neurological condition in which the individual affected has no insight or awareness of their neurological deficit or psychiatric condition. In other words, they do not know they are ill. It can occur with mental illness, dementia, structural brain lesions, and strokes.
It occurs in a large number of persons diagnosed with Schizophrenia and other psychotic spectrum disorders. Despite this, there is little acknowledgement anywhere that this devastating symptom exists.
As parents of adult children suffering from Anosognosia, we see them deteriorate cognitively, behaviorally, and socially but we do not see this symptom being addressed by health professionals including the mental health community. It is ignored by policy makers, by researchers, by law enforcement, by legislators and by lawyers supposably serving in the best interest of their mentally ill clients. Current policies are highly discriminating and should be changed to accommodate individuals suffering from Anosognosia.
My adult child has suffered from Anosognosia since the diagnosis of Schizophrenia several years ago. Although bright and well educated, symptoms began in university. Treatment is challenged at every opportunity because there is no recognition or association with the illness. It is heartbreaking. Doctors confirm there is no insight but the barriers in the system prevent progress at many levels. I am losing hope that improvements we see with medication will be sustained as our loved one becomes part of the “revolving door” system which does not recognize Anosognosia for what it is. With every hospital admission there are decreased results from treatment.
Little of this symptom is understood by many health professionals, some psychiatrists included. Anosognosia is unknown to the public and is absent or poorly accommodated for in the Mental Health legislation. It is easy to be ignored and even taken advantage of by legal aid defense lawyers. As a result, individuals suffering with Anosognosia can be found “capable” of making their own medication decisions while not understanding they have a medical condition at all. They are typical of the “revolving door” community. After being involuntarily treated they do well in some aspects of their illness, for example, the suspicion and paranoia may diminish or disappear but the Anosognosia remains unchanged. I have observed in our case that while Psychosis comes and goes and improves with treatment, Anosognosia does not… it is constant.
My adult child refuses treatment and may win a challenge in court because the legislation and defence lawyers do not pay heed to the symptom of Anosognosia. Eventually, they will re-appear (involuntarily) in the ER, in deep psychosis and in need of treatment again. It is inadequately addressed in Ontario’s (and I suspect in other Provinces) Mental Health Act, in the Consent and Capacity Act and in Canada’s Privacy Act which prevents caregivers of people suffering from Anosognosia consulting with doctors and prevents them from receiving documentation or useful information about their family member’s condition. Families live in the dark.
At the Consent and Capacity Board, a tribunal to determine whether an individual is capable of making their own medication decisions, some lawyers assigned to defend our adult children do not appreciate Anosognosia. They treat the case as a game to win at all costs, making the sick sicker and fueling the revolving door to expensive and unwanted lengthy hospitalization.
Sadly, research into Anosognosia appears to be almost nonexistent. Not surprisingly, patients like my adult child will not consent to research. Why should they? They do not believe they are ill. But without research, we will never move forward. I believe that the Psychopharmaceutical community has neglected Anosognosia in the treatment of psychosis related disorders.
My adult child is unable to hold a job, suffers from paranoia, goes missing, sets the house on fire, yet the legislation allows my child to be found capable of making medication decisions. Our sick children refuse medication because they believe they are not ill, refuse therapy because they believe they don’t need it. They refuse to apply for government financial support because they believe they are not disabled. They would meet the criteria for support but will never agree to the requirement to sign the application. We are aging parents supporting our adult child and don’t know what will happen, when we are no longer here. Moreover, we are estranged from our family due to this condition and have no outside support.
Anosognosia is a neurological condition and should be treated as such but when it affects patients suffering from Schizophrenia, it is not. This results in inadequate treatment and rehabilitation. Parents go through legal hoops to help their adult children and many times they are rejected.
On behalf of thousands of parents across this country, I would like to impress upon policy makers that this is a travesty ignored. Investigation including scientific research into Anosognosia is of the utmost importance. Its end product is misery. It is responsible for many homeless people, incarceration, expensive re-hospitalizations in every Province in Canada. It causes mental and physical stress and trauma to families, which also puts a burden on our healthcare system.
Homelessness, Psychotic Illnesses Call For More Research, Legal Changes To Address Anosognosia
Advocates in New York City and more recently British Columbia are making attempts to encourage medical treatment for those who are in psychiatric crisis.
With a growing awareness of chronic homelessness comes the realization that many people on the streets have untreated serious mental illness, impacting NOT ONLY THEIR LIVES BUT the social and economic fabric of our society.
As mothers of adult children with psychotic tendencies, we understand only too well that our loved ones are unable to make decisions with regards to their illness and wellbeing.
The major barrier to treatment is Anosognosia:
WELL, KNOWN AS A SYMPTOM OF DEMENTIA, IT IS ALSO PRESENT IN serious MENTAL Illnesses. Patients lack awareness of their own neurological or cognitive deficits.
It is not the same as denial, which is a psychological avoidance. It is a cruel condition that gets in the way of treatment, AS THOSE WITH IT DO NOT RECOGNIZE THAT THEY ARE ILL AND and therefore are unwilling to accept PSYCHIATRIC TREATMENT. As a result, our loved ones are simply unable to function in daily life without necessary treatment.
Fifty to eighty to percent of people suffering from Schizophrenia and other psychosis spectrum disorders suffer from Anosognosia.
They are unable to understand that they have a serious mental illness and they need treatment. Reasoning WITH THEM ABOUT THE NEED FOR TREATMENT is not possible even if the facts before them are indisputable. A patient with Anosognosia will not voluntarily go to hospital or seek treatment.
Without treatment recovery is not possible, yet obsolete legislation only allows for involuntary treatment if the person is deemed a physical danger to themselves or others.
Arguably, refusing medication itself creates a danger to themselves. However, even with a good response to standard medicines, Anosognosia USUALLY blocks adherence to treatment. Our legislation does not address this, frequently allowing situations where patients can refuse to continue to be medicated.
Then the cycle repeats. In our opinion, this is why so many mentally ill people are homeless or incarcerated.
It is inhumane.
Those who are lucky enough to have family support WILL still OFTEN face homelessness as parents are aging and their adult children will have nowhere to go.
It is unfathomable that policy makers cannot deal with the need to change the laws to appreciate and accommodate this cruel indignity inflicted on such ill people. This condition has long been ignored, misunderstood, and neglected.
It is time to broaden the admission and treatment criteria by appreciating Anosognosias ability to distort capacity for decision-making regarding treatment. At the same time aggressive education and research is imperative to stop the harm to the seriously mentally ill.
Reducing the Stigma of Mental Illness is Just the Beginning
by Susan Horne
The word “stigma” is associated with shame and disgrace. Although persons experiencing a physical illness (diabetes, a heart condition and so on) are highly unlikely to experience stigma, it may unfortunately be a daily occurrence for those struggling with mental illness, and especially severe mental illness. Stigma assigns blame to people who may already feel overwhelmed by their mental state and unable to control it.
Stigma may be perpetuated by individuals, the public and even the institutions set up to serve us. Many persons struggling with mental illness stigmatize themselves – they internalize the shame and come to see themselves as unworthy and incompetent. Not only do they have to find a way to live with the invisible enemy of mental illness within them but also the dishonour associated with it.
The public’s attitudes toward mental illness also play a role. When confronted with new and especially unusual behaviours and circumstances, we tend to be afraid and to make judgments. We may therefore be hesitant to try to understand the behaviours of mentally ill persons or to support them on their journey to wellness. Even the families of mentally ill persons are stigmatized: they are reluctant to speak about having an ill family member, thus adding to their own stress as caregivers.
The effects of stigma hurt all of us. We can help reduce the stigma associated with severe mental illness by endeavouring to learn more about it. We can all add to our understanding through a quick online search. Accept that mental illness is a legitimate illness. Mentally ill persons are not just seeking attention. It is not a character flaw. Let’s not marginalize people with mental illness.
Reducing stigma related to mental illness is only the beginning of what needs to be addressed in our community. What is being done to provide adequate services for those who are suffering? Stigma at the institutional level is especially impactful. Is it fair, for example, that less funding is assigned to the treatment of mental illness in our communities than physical illness? Until mentally ill persons receive the same standard of care as those with physical illnesses, there is still work to be done.
We need to do more.
Understanding the Use of NCRs (Not Criminally Responsible) for Severely Mentally Ill Persons
by Susan Horne
“Contrary to some commonly held assumptions, the existence of a mental illness is not necessarily linked to increased criminal behaviour. “ [Source: Justice and Mental Health, https://ontario.cmha.ca/provincial-policy/criminal-justice/] The justice system does, however, “sometimes serve as the first point of contact for accessing mental health and addictions services for people who had previously never accessed services and supports”. [Source: ibid]
Some persons with severe mental illness such as schizophrenia are not aware that their actions in a given situation are morally wrong. Their intentions are not criminal. They suffer from anosognosia – they are ignorant of the fact that they have a severe mental illness that impairs their judgment. They may be directed by delusional thoughts (“command hallucinations”) even to commit a murderous act.
Severely mentally ill persons who don’t know they have a problem are not likely to seek help. So, what happens if they do commit a criminal act and are brought before the justice system? What constitutes justice? For the individual? For the community?
Being found “not criminally responsible (NCR) is a means to acknowledge that the individual will neither be convicted nor acquitted criminally. Being found NCR means that they are not responsible for what they did and should therefore not be punished. Experts in psychiatry and the law are both involved.
While in prison and waiting for a designation of NCR, the individual does not necessarily receive treatment. They can be put in isolation, with very limited contact or opportunity for exercise.
A psychiatrist is required to do a psychiatric assessment to review the evidence to identify if a person is NCR. A judge or jury then oversees a hearing in which the psychiatrist’s findings are presented and it is decided if the case should be moved from criminal court to an Ontario Review Board (ORB) hearing to determine what happens next. Members of the ORB are experts in both psychiatry and the law.
At this point, the best interests of both the individual and the community are considered. Is the severely mentally ill person a threat to the community? Has the person made any progress since the offence? (The person can only make an improvement if he or she receives treatment.) What is their current state of mental health?
Being detained in a mental health facility allows the person to receive necessary treatment and allows the success of the treatment to be monitored. If the treatment is successful, they may be released into the community with supervision. If the person does not receive NCR status, they may have to serve a sentence in prison, where no treatment is provided.
Some severely mentally ill persons are required to spend the rest of their lives in the custody of a mental hospital. Criminals could have completed the terms of their sentence and been released back into the community long before that. So, an NCR is not necessarily a “slap on the wrist” compared to a prison sentence.
There are still those in the community who feel that someone who committed a murder should be made to “pay” for their crime in jail (where there are no supports for mental illness). This sentiment, sometimes held by law enforcement officers and legal authorities, is not consistent with a clear understanding of severe mental illness, embraced and endorsed by psychiatrists and supported by medical literature. Severe mental illness is not a character flaw. It is an illness (like diabetes) which is often (50% of the time with schizophrenics) characterized by anosognosia – a complete lack of awareness of its presence.
Some severely mentally persons lack the ability to sort out right from wrong. As a community, we owe it to these individuals and their families to accept this fact and give them the respect and consideration they deserve. Going to jail (where there are no supports for mental illness) is neither just nor humane.
We also need to consider what monitoring is necessary if a person granted an NCR is released into the community. Who is responsible for ensuring that they continue to receive treatment?
These are questions worth asking and answering.
CBC – The Current Podcast
To overcome stigma, some groups supporting people with schizophrenia are taking the name of the illness out of their organization’s name. We talk to advocates and people living with schizophrenia about how that stigma is changing — and yet not changing quickly enough.
Listen to the podcast here.