Research reveals that most caregivers of people living with schizophrenia are family members (94 percent), and oftentimes, the journey of the caregiver can be just as challenging as that of the patient, whether they’re newly diagnosed or have been managing the condition for years.
As they navigate the journey together, it’s important that patients have a support system and that caregivers are educated on the disease and treatment options, and have their own support, in order to make the journey as positive as possible for everyone.
In my experience, a schizophrenia diagnosis can be daunting for the patient and their family/care team, especially if the patient is young and facing a lifetime of disease management. Often, there is also denial of illness on the part of the patient and their loved ones. It’s important as providers that we work to cut through this denial and help educate about the disease (including how serious it is), what to expect (short and long-term), and how everyone can work together to support the patient.
Early intervention and collaboration also are key. If families provide support early on, such as after the first psychotic episode, they’ll be more likely to develop a knowledge base and understanding of the disease trajectory. And long-term, caregivers are a critical piece of the care puzzle because they are often the first to see changes that could mark the onset of symptoms or side effects of treatment and are in a position to communicate these to the health care team – this may help curb future relapses and the need for hospitalization.
Further, while daily oral medications are often considered the standard of care in treating schizophrenia, some patients may find it challenging to take a pill (or several) each day. That’s why it’s important for physicians, caregivers, and patients to discuss all appropriate treatment options, including oral medications or even long-acting injectable (LAI) medications, and work together to choose the treatment that supports a patient’s needs and goals. For some patients, an LAI may offer convenience for the patient and reassurance for families that their loved ones are getting the medicine they need. Regardless, engaging both patients and caregivers in the decision-making process is critical to navigating the treatment landscape and helping patients reach their goals.
Treatment takes teamwork between the patient, caregiver, and physician. All parties must agree this is a lifelong journey and be dedicated to short- and long-term goals, recognizing that the journey will come with a unique, and often complex, set of complex challenges. However, by pairing continued education on the disease with information on the range of treatment options, we have an opportunity to work together to change the conversation around schizophrenia, reduce stigma, and support more people in need. With less than a third (31 percent) of those diagnosed with schizophrenia receiving specialist mental health care, it’s imperative we do more.
On a personal note, my brother was diagnosed with schizophrenia as I was entering my psychiatric residency. I saw the good, the bad, the mistakes. And while his story wasn’t the reason I chose this profession, it’s part of the reason why I’m such a strong proponent of LAI medications, such as aripiprazole. I know, firsthand, how someone with a degree from the University of California, Berkeley, can succumb to isolation and struggle, and this is a long-term trajectory most families can’t see when they start the journey.
It’s also important to recognize that support often evolves with the illness. Younger patients with schizophrenia tend to have more family involvement, and if you have a very loving family, they tend to be more plugged in. But, parents will age, and siblings will grow families of their own, so support systems must adapt and stay nimble to ensure they’re meeting the needs of their loved ones while also evolving through life themselves.
Regardless of the circumstances of the first psychotic episode, families will be a part of this journey for a lifetime and need to prepare for how their loved ones will best need their support through all the ups and downs – and there will be many. We’re lucky to be in a world where the field of psychiatric medicine is growing rapidly, and we’re seeing awareness spread to eliminate stigma, promote greater support systems, and create more resources.
Don’t forget about you.
I’d be remiss not to mention how caregiving takes a 360-degree approach. Not only do you support your loved one, but you cannot forget about supporting yourself throughout the ever-evolving treatment journey.
For caregivers, taking care of their own mental health often takes a backseat, but self-care is critical to being the best possible caregiver for a loved one. Suggestions from the National Alliance of Mental Health (NAMI) include maintaining physical health (closely linked to mental health), recognizing stress reactions to better prepare and cope to the next one, and creating your own support system to vent and decrease the psychological stress when needed.
Caregiving is not an easy role; far from it. However, by recognizing that this will be a lifelong journey, and taking advantage of the many services, supports, and resources available, you’ll be better equipped to support your loved one and yourself on the schizophrenia journey.
Frank Chen is a psychiatrist and physician executive.