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Why Won’t They Take Their Meds?
Category / Just the Facts
How Children’s Mental Illness Hurts Workplaces
Earlier this year, Nationwide Children’s Hospital released a first-of-its-kind study on how pediatric and adolescent mental health crises impact the workforce. The answer is: Hard. Very hard.
The study is titled “The Great Collide: The Impact of Children’s Mental Health on the Workforce.” Funded by the Nationwide Foundation, it is part of Nationwide Children’s Hospital’s On Our Sleeves movement.
It found that among working parents:
- 53 percent have missed work at least once a month to deal with a child’s mental health issues.
- 54 percent have interrupted their work to answer communication about their child’s mental health situation during work hours.
- 85 percent think it’s a good idea to talk about their children’s mental health issues, but few have done it.
- Up to 50 percent are thinking about their children’s mental health while at work.
The study also found that working parents under age 40 are more concerned about their children’s mental health and more likely to select jobs offering benefits that give them access to mental health services.
If these numbers seem high to you, it’s because of the secrecy involved in dealing with a child’s mental illness. You don’t call in because your child is sick; instead you claim to be sick yourself. I know this from experience.
During the 1990s, I had a young child with mental health issues. My boss once denied me a raise specifically because of the number of phone calls that I received from my child’s school. I frequently had to go get my child at school due to behavioral problems. (My co-workers joked that I should put a courier slip in her hair on a barrette, so the courier could bring her to the office when needed. That way I wouldn’t have to leave.) I held my breath until 2:30 p.m. when school was out every work day. And that was before we had to start homeschooling for the child’s safety from bullying.
Nationwide is adding resources for parents on OnOurSleeves.org as well as rolling out a program for employers soon. Parents need this help. Therapists rarely have time to help parents with all the caregiving issues around having a child with a mental illness. Yet it’s so, so common.
Treatments for Mental Illness
Navigating the mental health system can be quite difficult. But once you have your loved one there, what happens?
For severe and persistent mental illness, the best practice is to use traditional psychotherapy or “talk therapy” with medication. If the brain is not functioning correctly, all the therapy in the world can do little good. So stabilizing the brain is the first priority.
What types of medication are used?
- Antipsychotics reduce or eliminate delusions and hallucinations by impacting the brain chemical dopamine.
- Antidepressants improve depression by impacting the brain chemicals associated with emotion: serotonin, norepinephrine and dopamine.
- Antianxiety medication reduces the emotional and physical symptoms of anxiety. This includes meds like Xanax and beta-blockers.
- Mood stabilizers are medicines that treat and prevent mania and depression. They are most commonly used for bipolar disorder. Examples include carbamazepine (Tegretol), divalproex sodium (Depakote), lamotrigine (Lamictal) and lithium.
What types of treatment are used?
Once the medications are working, doctors and social workers have a variety of options for psychotherapy. In each case, the person works with a therapist in a safe, confidential environment to understand their feelings and behavior, while learning new ways to cope. These types of treatment may include:
- Cognitive Behavioral Therapy (CBT) is based on the relationship between thoughts, emotions and behaviors. The therapist works to uncover unhealthy patterns of thought that cause self-destructive behavior and beliefs. Once those patterns are identified, the patient can identify them and learn to find more constructive ways of thinking and responding. Used for depression, anxiety, bipolar disorder, eating disorders and schizophrenia.
- Dialectical Behavior Therapy (DBT) combines CBT with teaching skills in mindfulness, interpersonal effectiveness, emotion regulation and distress tolerance. It emphasizes validation, or accepting uncomfortable thoughts, feelings and behaviors. The therapist helps the person find a balance between accepting themselves and changing by learning new skills and coping methods. Originally developed for people with borderline personality disorder, it is now used for other illnesses as well.
- Eye Movement Desensitization and Reprocessing Therapy has the patient focusing on two things at once: emotionally disturbing thoughts and an external stimulation, like eye movements. For PTSD.
- Exposure Therapy involves gradually exposing the patients to their phobia or the cause of their anxiety without causing them any danger. For obsessive-compulsive disorder, PTSD and phobias.
- Interpersonal Therapy focuses on relationships by improving the patient’s interpersonal functioning. For depression.
- Psychodynamic Therapy includes free association and open-ended questions. For depression, anxiety, borderline personality disorder and other illness.
- Mentalization-Based Therapy combines psychodynamic, CBT, systemic and ecological therapies. It’s used for borderline personality disorder because the illness often causes feelings of emptiness or unstable self-image. Mentalizing allows the patient to consciously perceive and understand their own feelings and thoughts. It also allows them to understand more about the feelings and thoughts of others.
- Therapy Pets help reduce symptoms of anxiety, depression, fatigue and pain.
Next time we’ll cover the best ways to work with mental health professionals and how to keep a treatment record.
Now Open: 988 Suicide Hotline
A new national suicide hotline number is now open. Call 988 when you want to prevent suicide.
In Ohio, the 988 number connects to one of 15 designated lifeline call answering points. Trained mental health specialists answer the calls, providing both counseling and direction to resources for mental health care.
The new number is based on the success of 911, which has been used as an emergency number for all types of crises since 1968. Officials hope that sending suicide calls to 988 will take pressure off the 911 system, which sends police and/or paramedics to a scene.
The 988 calls connect people immediately to mental health crisis services. It also improves the information provided. Until the hotline opened this month, more than 40 percent of Ohio’s suicide prevention calls were answered by people from other states who didn’t know the Ohio system and could not give advice about accessing its resources.
The Department of Mental Health and Addiction Services is implementing the new line with federal startup funds of $400 million.
In addition to the designated call line, NAMI Ohio is also asking for the development of a better, more thorough crisis response system, allowing the specialist to help direct people to housing, rehabilitation services and employment services. I agree with this, although I know it will be difficult to get the funding. After all, it doesn’t help much to answer the phone if you can’t direct people to the help they need.
Who’s Who on a Mental Illness Team
The United States does not have a well-organized system to treat substance abuse and mental illness. Sometimes it’s hard to know who to turn to for your needs. This overview answers the question: Who does what?
Primary care physicians can prescribe and monitor medication, but often prefer that you work first with a psychiatrist.
Psychiatrists are licensed medical doctors with medical and psychiatric training. They can diagnose and prescribe medication. Some provide therapy.
Psychiatric nurse practitioners have a master’s or PhD and specialized training. They can assess, diagnose, prescribe medication and do therapy. You can usually get an appointment with a psychiatric nurse practitioner more quickly than with a psychiatrist.
Clinical psychologists with doctoral degree make diagnoses and provide individual and group therapy.
Psychiatric or mental health nurses, depending on education and licensing, can assess and treat illness, do case management and provide therapy.
School psychologists can make a diagnosis, provide therapy, and work to provide healthy school environment. My personal experience is that school psychologists do not have enough bandwidth to do an effective job with children who are struggling.
Counselors can help find better ways of thinking and living, as well as help people develop life skills. Some can diagnose and treat.
Clinical social workers has a master’s degree in social work. They make diagnoses and provide counseling, case management and advocacy.
Peer specialists are individuals who have experience with a mental illness and can help others with recovery.
Social workers with a B.A. or B.S. can provide case management, inpatient discharge planning and placement services.
Psychiatric pharmacists have doctoral training and residence training to provide comprehensive medication management. They usually work in a health care system like Veterans Affairs, hospitals, clinics., etc.
Our Mental Health “System”: A Shameful History
When you are navigating the mental health system, have you felt:
- Confused?
- Frustrated?
- Angry?
- Insulted?
To say that the United States does not have a well-thought-out mental health system is a great understatement. Here’s a brief review of how we got here:
In the 1700s, mental health treatment began to move from the horrific asylums to hospitalization. By the first half of the 20th century, mentally ill people were usually either at home or in institutions.
The year 1954 introduced the first antipsychotic drugs, which improved functioning for many people. So many thought that people with mental illness could live outside of hospitals.
In the early 1960s, the Kennedy administration introduced a plan for more humane mental illness treatment. In 1963, President John F. Kennedy signed the Community Mental Health Centers Act. The program proposed closing the hospitals and replacing them with community mental health centers, where the mentally ill could be treated in homelike settings. This included strict standards so only individuals “who posed an imminent danger to themselves or someone else” could be committed to a state psychiatric hospital.
Mental hospitals began to close in the mid-1960s. But Congress never approved the funds needed to open the equivalent number of community mental health centers.
President Jimmy Carter’s Mental Health Systems Act of 1980 was passed to continue federal funding for mental health programs. In 1981, President Ronald Reagan, in The Omnibus Budget Reconciliation Act , repealed that act, eliminating the money needed for these centers.
In 1955, 558,239 severely mentally ill patients were institutionalized at public hospitals (Torrey, 1997). By 1994, by percentage of the population, we have 92% fewer hospitalized individuals (Torrey, 1997).
Today, community mental health centers do provide mental health services. But many people released under deinstitutionalization became their families’ responsibilities.
They also became homeless (26% of homeless have mental illness, according to HUD). Many of them are in prison. People with mental illnesses are overrepresented in prison. It’s estimated that 55 percent of male inmates and 75 percent of female inmates have mental illnesses. Meantime, the CDC says there are 5.7 million emergency department visits with mental illness as the diagnosis annually.
Caregiver’s Guide to Brain Basics
Mental illnesses are brain disorders. Trying to understand the “why” behind an illness or the “how” behind medication requires caregivers to know some detail about how the brain works. For example: What’s a neurotransmitter? What are synapses? And what’s the difference between serotonin and dopamine?
This basic overview, which answers those questions, comes from material on the National Institute of Mental Health’s website. The site contains lots of information to answer your questions about the complexities of mental illness.
NIMH research shows that mental illnesses can be related to changes in the anatomy, physiology and chemistry of the nervous system. When the brain malfunctions, symptoms of mental illness start to appear.
Neurons are the basic working unit of the brain and nervous system, each enclosed by a cell membrane. These highly specialized cells conduct messages. Each neuron has three main parts:
- A cell body with a nucleus (containing DNA and information the cells needs for growth and repair) and cytoplasm, the substance filling the cell where all the chemicals and small structures named cell organelles reside.
- Dendrites that branch off from the cell body and are the neuron’s point of contact for receiving chemical and electrical signals (called impulses) from other nearby neurons.
- Axon that send impulses and extend from the cell body to meet and deliver impulses to another neuron.
Synapses are tiny gaps between neurons where the impulses or messages move from one neuron to the other as chemical or electrical signals.
The brain continues to mature at least until a person is in his 20s. As scientists learn more about brain development, they can see what goes wrong when a person develops a mental illness. One of the mysteries of schizophrenia, for example, is why it often occurs for the first time when a person is in his late teens or early 20s. Many believe scientists will find the secret as they learn more the processes in the brain at that time.
What can go wrong in the brain?
Every cell contains a complete set of DNA, with all the information inherited from our ancestors. As we grow, we create new cells, each with a copy of the DNA. Sometimes the copying process goes wrong, resulting in a gene mutation.
Scientists also study epigenetics, which looks at how environmental factors, such as sleep, diet and stress, can influence our genes. Unlike gene mutations, epigenetic changes don’t change the DNA code. They affect how a gene turns on or off to produce a specific protein.
The role of neurotransmitters
All that we do depends on neurons communicating with each other through electrical impulses and chemical signals. Neurons activate with small differences in electrical charges, called action potentials. The ions (atoms with unbalanced charges) concentrate across the cell membrane and travel very quickly along the axon. (It’s a bit like dominoes falling.)
When the action potential gets to the end of the axon, most neurons release a neurotransmitter, or a chemical message, that crosses the synapse and binds to receptors in the next neuron’s dendrites. So neurotransmitters are key to sending chemical messages between neurons. In mental illness and other conditions like Parkinson’s disease, this process doesn’t work correctly.
Important neurotransmitters include:
- Serotonin controls functions including mood, appetite and sleep. People with depression usually have lower levels of serotonin. Some medications that treat depression block the recycling, or reuptake, of serotonin by the sending neuron. So more serotonin stays in the synapse for the receiving neuron to obtain. This medication, called selective serotonin reuptake inhibitor (or SSRI) causes more normal mood functioning.
- Dopamine controls movement and aids the flow of information to the front of the brain, where thought and emotion take place. Low levels of dopamine can result in Parkinson’s disease, which affects the person’s ability to move and causes tremors, shaking and stiffness. Some research suggested that having too little dopamine in the thinking and feelings sections of the brain could play a role in schizophrenia and attention deficit hyperactivity disorder.
- Glutamate is the most common neurotransmitter. When it is releases, the chances that the neuron will fire increase. So it enhances the electrical flow among brain cells. It also may be involved in learning and memory. Problems in making or using glutamate have been linked in autism, obsessive compulsive disorder, schizophrenia and depression.
Regions of the brain
Many neurons working together form a circuit. And many circuits working together form specialized brain systems. Research into the causes of mental illness tend to focus on these regions:
- Amygdala activates the “fight-or-flight” response to confront or flee from a situation. Scientists are studying the amygdala’s involvement in anxiety disorders, including post-traumatic stress disorder and phobias.
- Prefrontal cortex is where the brain’s executive functions are. These include judgment, decision making and problem solving. The prefrontal cortex also works in short-term memory and retrieves long-term memory. It helps to control the amygdala during stressful events. Research shows the people with post-traumatic stress disorder and attention deficit hyperactivity disorder have reduced activity in the prefrontal cortex.
- Anterior cingulate cortex has many roles, including controlling blood pressure and heart rate. It also helps us respond when we sense a mistake, feel motivated, stay focused on a task and manage emotional reactions. Reduced activity or damage in this area is linked to attention deficit hyperactivity disorder, schizophrenia and depression.
- Hippocampus helps create and file memories. When it is damaged, the person can’t create new memories. However, the person can still remember past events and learned skills, as well as carry on a conversation, because those activities are in different parts of the brain. The hippocampus may be involved in mood disorders through its control of a major mood circuit called the hypothalamic-pituitary-adrenal axis.
No one expects caregivers to become brain scientists, but having a general understanding of the brain will help when learning about medicines and research. The more knowledge we have, the better.
Stigma at Its Worst: Schizophrenia and COVID
I am furious about this.
Do you know what the second highest risk factor for dying from COVID is? The highest is old age. The second highest is having a diagnosis of schizophrenia.
This was first reported much earlier in the pandemic. I heard about it. I even mentioned it to an Ohio State University friend who used to head up my city’s health department. But scientists seem to be repeatedly surprised by it. And the government has done basically nothing about it.
Now it’s Year 3, and it’s news on NPR????
If the second highest risk factor for COVID deaths were health disease or lung disease or diabetes, do you think something would have been done to reach out to those folks? Of course. So why was there no effort to help people with schizophrenia?
People with schizophrenia were left off the priority list for help in my state, Ohio, and many others. My loved one with a schizophrenia diagnosis had to wait until people his age were allowed to get vaccines.
NPR interviewed Katlyn Nemani, a neuropsychiatrist and researcher at New York University. She described the initial reaction to the data showing that people with schizophrenia were three times more likely to die from COVID than the general population. It was disbelief.
“They said it must be because people with schizophrenia are already worse off health-wise, or because they have trouble accessing health care,” she said. That turned out to be wrong.
Studies from countries with free universal health care … the United Kingdom, Denmark, Israel, South Korea and so on … came in, also showing that people with schizophrenia were two to five times more likely to die from COVID.
Yet, the CDC didn’t add schizophrenia to the list of high-risk conditions until people began getting booster shots in October 2022. Other countries, like England, Germany and Denmark, put people with schizophrenia on the priority lists for vaccines at the beginning.
Nemani told NPR that this discovery could be good for people with schizophrenia. She said it may mean that the badly understood illness has a component in the immune system or elsewhere in the body. It could lead to new understanding and new treatments … for those with schizophrenia who are still alive, that is.
My own guess? It’s stigma. Far too many people think that the lives of people with schizophrenia do not matter. If they die from COVID, so what?
Schizophrenia is tough enough without the stigma. It affects 24 million people in the world, including 2.8 million in the United States.
This is barbaric. It’s time to fight for people to see the disease as a disease, not a disqualifying condition for living a good life. I am furious. I am sickened. I am sad.
Mental Illness in the USA: Pandemic Edition
Note: The National Institute of Mental Health, Mental Health America and NAMI have all released statistics about the state of mental health in America. Much reports on the year 2020, the first of the pandemic. Below are highlights from the reports. You can see the full information by clicking on each organization’s link above.
Twenty-one percent of U.S. adults experienced mental illness in 2020. That’s 52.9 million people. The annual prevalence of condition for 2020 is:
- Anxiety Disorders: 48 million people (19.1% of U.S. population)
- Major Depression: 21 million (8.4%)
- Posttraumatic Stress Disorder: 9 million (3.6%)
- Bipolar Disorder: 7 million (2.8%)
- Borderline Personality Disorder: 3.5 million (1.4%)
- Obsessive Compulsive Disorder: 3 million (1.2%)
- Schizophrenia: 1.5 million (less than 1%)
Fifty percent of all lifetime mental illness begins by age 14 and 75 percent by age 24. About 7.7 million U.S. children ages 6-17 experienced a mental health disorder.
The percentage of people getting treatment continues to be low (46% of adults, 65% of adults with severe mental illness and 50% of youth). The average delay between the onset of mental illness symptoms and treatment is 11 years. And the number of U.S. counties that do not have even one practicing psychiatrist: 55%.
Impact of Mental Illness in 2020
Mental illness and substance use disorders are in involved in one out of 8 emergency room visits (12 million visits). Mood disorders like Bipolar and Major Depression were the most common cause of hospitalization for people under 45, excluding childbirth. People with serious mental illness are:
- 21% of the homeless
- 37% of adults in state and federal prisons
- 44% of adults in local jails
- 70% of youth in juvenile justice system
- 15.3% of U.S. veterans
Twenty-five percent of the people shot and killed by police between 2015 and 2020 had a mental illness.
At least 8.4 million Americans provide care to an adult with mental illness. They spend an average of 32 hours per week providing this care, although that seems high to me.
Ranking of States
Mental Health America does an annual ranking of states that show which are doing the best job dealing with mental illness, based on 15 measures. The Top 10 are:
- Massachusetts
- New Jersey
- Pennsylvania
- Connecticut
- Vermont
- New York
- Wisconsin
- Maine
- Maryland
- Minnesota
My state, Ohio, fell from No. 11 in the ranking last year to No. 25 because of the large increase in the number of youth who have a mental health diagnosis and are not getting treatment.
988 National Suicide Hotline
A new national suicide hotline number will be available in July: 988.
In Ohio, the 988 number will connect to one of 15 designated lifeline call answering points. Trained mental health specialists will answer the calls, providing both counseling and direction to resources for mental health care.
The new number is based on the success of 911, which has been used as an emergency number for all types of crises since 1968. Officials hope that sending suicide calls to 988 will take pressure off the 911 system, which sends police and/or paramedics to a scene.
The 988 calls will connect people immediately to mental health crisis services. It also will improve the information provided. At present, more than 40 percent of Ohio’s suicide prevention calls are answered by people from other states who don’t know the Ohio system and cannot give advice about accessing its resources.
All this will change with 988. In Ohio, the Department of Mental Health and Addiction Services is implementing the new line with federal startup funds of $400 million.
In addition to the designated call line, NAMI Ohio is also asking for the development of a better, more thorough crisis response system, allowing the specialist to help direct people to housing, rehabilitation services and employment services. I agree with this, although I know it will be difficult to get the funding. After all, it doesn’t help much to answer the phone if you can’t direct people to the help they need.