Early Psychosis Intervention - When Someone You Love First Shows Signs of a Mental Illness
You want to know what to expect. You want to know how to help.
Matt was 21 when diagnosed with schizophrenia; his identical twin brother Jacob was diagnosed with the same disease six months later. “The only correct attitude at the start of this illness toward your sick loved one,” says the boy’s dad, Michael, “is unconditional love.”
Three years since initially connecting with GCB’s FIRST Program, Matt and Jacob are now stable on medication, receiving care management and celebrating the good days and small steps. The FIRST Program is the only program of its kind in the Greater Cincinnati area that provides coordinated specialty care for individuals and families who have experienced psychosis for the first time.
Currently, the program has approximately 55 clients in Hamilton, Butler and Clermont counties, ranging in age from 15-40, with the majority of them being 20-25 years old. Launched nationwide in October of 2015 as a result of a federal grant, the program follows the evidence-based curriculum of the Best Practices in Schizophrenia Treatment (BeST) Center at Northeast Ohio Medical University.
The model of treatment focuses on resiliency training as well as Cognitive Behavioral Therapy for Psychosis (CBT-p). CBT-p is derived from CBT, a form of psychotherapy which focuses on both cognitions (thoughts) and behavior. Central to this therapy modality is helping clients to understand the factors that influence their reactions to situations and then assisting them with changing how they think about a situation. The client’s team includes a psychiatrist, case manager, therapist, supportive employment/education specialist, as well as family support and education.
William Bomkamp is a FIRST case manager, and often meets with new clients and their families in their homes. “Mental illness doesn’t discriminate,” he says, noting that his clients come from ‘all corners of the city,’ representing the full range of income and education levels. “Meeting with families for the first time can be intense,” he says. “They are usually just starting this journey; their lives have been hi-jacked.”
“Often, the parents will ask if they’ve done something to cause this, blaming themselves,” says Jessica Dean, FIRST case manager. “We explain that it’s a disease, and nobody’s fault – just like arthritis or cancer isn’t anybody’s fault. Then, they want to know what the recovery process looks like; what are realistic goals.”
Hearing voices (auditory hallucinations) is a common experience for people living with schizophrenia. For the client, these voices – which can be directive, critical or persecutory - are as real as hearing a person in the same room speaking.
“Often, their perceptions of what is going on with them is different than what everyone else sees, so it can be hard for them to trust that what we’re trying to do will help them,” says William. “As their mental health provider, we need to find mutually agreed upon goals to work towards, and we need to encourage family members to do the same. We’re all partners in this.”
“The same individual who was doing well in school and socially active has suddenly lost interest in everything and doesn’t want to leave the house, sometimes even their room,” says Emily Wanstrath, FIRST clinician. “Motivation to care for themselves and accomplish goals disappears and often is the hardest symptom for parents to deal with.”
Clients are given a diagnosis at intake by a licensed professional, and then go through a six-month assessment period to determine the appropriateness of their diagnosis. They are seen by a psychiatrist within 14 days of the initial referral. To be admitted into the program, the individual must have a qualifying diagnosis, meaning one of the five symptoms on the schizophrenia spectrum diagnoses.
If it is determined they do not meet criteria, they are transitioned to another team that can better meet their needs. The focus is always ‘a trajectory of wellness’ - getting the client back on track and as close to 100 percent of original functioning as possible.
“They just want to move on with their life, to accomplish the goals that we all have: graduate, get a job, have a family,” says William. “There is a lot of unfair stigma with mental illness, and clients are aware of that. Being given a diagnosis can be hard to accept at first, which is why building a trusting relationship with the client is really the first step in their treatment.”
Why is early intervention so important?
“The sooner a client can get connected to treatment, the better their future outcomes in achieving their desired goals and returning to their previous level of functioning,” says Emily. “Each time an individual suffers a psychotic episode, more damage is done to the brain, which impacts that person’s cognitive and social functioning. The longer an individual goes without treatment, the greater the impact it has on them; they lose their personality. If the duration of untreated psychosis is too long, chance of recovery is low, vs. someone who is caught early.”
Clients are usually referred from hospitals (although self-referrals are successful in finding the program via an online search) and are seen within 72 hours. Intakes are typically completed in the office and sometimes at the hospital. The grant completely covers the cost of the treatment, whether the patient has insurance or not.
One of the most common issues amongst new clients is denial that anything is wrong with them. “The term is ‘anosognosia,’ says Sunnie Lumpkin, team supervisor. “It means ‘lack of insight’ and is a symptom of severe mental illness that impairs a person's ability to understand and perceive their illness. It is the single largest reason why people refuse medications or do not seek treatment. That’s why building trust in their teams is so important.”
Clients are provided Individual Resiliency Training (IRT) in therapy, which involves coping skills, managing stress, lifestyle choices, building insight as well as education on relapse symptoms to watch out for. The role of the case managers is to practice with them in the community, the skills that they’re learning so that eventually, they will gain the confidence to navigate situations on their own.
Family Support and Education Play Critical Role
Family support and education play a critical role in creating a supportive environment for recovery. “Conversation and transparency between all parties helps to normalize the experience,” says Jessica. “When the families and the clients understand how to identify and label symptomatic behavior, it’s empowering. They learn that a re-appearance of symptoms doesn’t necessarily mean a trip to the hospital.”
Clients who graduate from the program are successful in getting stable on their medication, have good insight into their illness and are back on track towards achieving goals. “Hope is the foundation of the program,” says Jessica. “Early intervention provides an opportunity for healing and recovery. It’s a joy for me to play a part in creating that story.”
Becca, 21, has been a FIRST client for over a year. She has successfully progressed through the program, and has “come a long way” since being hospitalized after experiencing her first break. In the week leading up to hospitalization, she was out of town and experienced a traumatic hurricane. Once back home her symptoms surfaced talking at an excessively rapid pace, and experiencing insomnia for the first time. She was hospitalized, connected to GCB FIRST program, and re-hospitalized before becoming stable. “I went from extreme paranoia, thinking I was being poisoned and being in a catatonic state for most of the time, to getting stabilized and having the emotion of happiness again.”
Becca is back at home and happily considering options for continuing her education. “The FIRST team helped me understand my psychosis and taught me the skills so that if something reoccurs, I have the tools in place to manage,” she says. “The program is a hand print on my heart; it changed my life.”
“Do Not Be Owned by the Diagnosis”
The twin boy’s parents, Michael and Becky, have been with them every step of the way, not only supporting and advocating for them, but taking every opportunity to educate themselves on every facet of this illness. “In retrospect, we can see that all parts of this system are essential,” Michael says. “And that it is vital to respect your loved one’s reality, even when it differs greatly from your own.”
“To facilitate ongoing conversation about mental illness, it needs to be brought into the light and become less stigmatized,” Becky says. “We need to talk about mental illness as an illness that can be managed, and work to portray mentally ill people in a positive light as people who are able to contribute to society and live fulfilling lives.”
For families who are just starting down this path,” says Michael, “I would only recommend that they surround themselves with ridiculously talented and caring people. As for schizophrenia - look for the good and the bad, the mysterious as well as the heartbreaking. Reject the temptation to feel sorry for yourself and your loved one and do not be owned by the diagnosis. Above all else – know that you are not alone.”