Welcome. I’m Greg Mattingly, an Associate Clinical Professor at the Washington University School of Medicine and President of the Midwest Research Group here in St. Louis, Missouri. Today, we are going to talk about what is often referred to as the cancer of mental health. Schizophrenia is a chronic and frequently debilitating disease, which has unfortunately increased in prevalence over the past several decades.
Symptoms often first appear in young adulthood, with peak onset in men occurring in their teens to early twenties, and peak onset in women occurring in their early twenties to early thirties.
The symptoms of schizophrenia can be classified in various domains including positive, negative, and cognitive symptoms.
Positive symptoms encompass hallucinations, delusions, paranoia, or agitation. Negative symptoms include social withdrawal, flat mood, loss of pleasure, or difficulties with motivation.
Cognitive symptoms include poor concentration, disorganization, and slowed processing speed, and they dramatically impact functional outcome.
Symptoms of schizophrenia have a profound impact on a patient’s quality of life and daily functioning.
Personal relationships are frequently negatively impacted, and self-isolation becomes common.
Specific demographic characteristics, such as older age, social isolation, or lower level of education, may further increase the debilitating impact of a patient’s symptoms.
Disruptive symptoms can lead to a lack of independence, resulting in patients with schizophrenia often needing a family member or caregiver to assist with activities of daily living, provide emotional or financial support, and assist in medication and therapy management.
The role of a caregiver in schizophrenia management is multifactorial. Key aspects that caregivers must assist with include:
- Promoting medication adherence
- Providing emotional support
- Monitoring symptoms
- Assisting with daily tasks
- Facilitating social engagement
- Providing crisis support
Medication adherence is a critical component of managing schizophrenia symptoms, and the therapies involved in ensuring adherence can be challenging.
For example, clozapine requires regular bloodwork to monitor for the development of agranulocytosis per requirements of the US Clozapine Risk Evaluation and Mitigation Strategy, or REMS, Program.
Failure to complete this bloodwork may result in the patient no longer having access to clozapine, which can result in the reappearance of symptoms.
Equally problematic for patients are the adverse effects of antipsychotics, some of which may negatively impact their movement. In particular, severe extrapyramidal symptoms such as tardive dyskinesia or parkinsonism can occur, which may increase stigma and reliance on caregiver support.
Additionally, extrapyramidal symptoms are known to be a primary cause of poor medication adherence in patients with schizophrenia.
Low adherence to schizophrenia treatments can result in relapse and subsequent hospitalization. Thus, caregivers providing support in the management of medication adherence can positively impact patients’ long-term outcomes.
The support caregivers provide goes beyond helping patients complete daily tasks. Caregivers may also support patients’ education and employment to promote independence and improve quality of life.
Additionally, caregivers can help coordinate peer support to decrease isolation and provide both empathy and guidance as patients navigate the challenges of living with schizophrenia.
Often, caregivers have the ability to quickly react to patients’ symptoms. This rapid response is a prerequisite to maintaining good patient functioning.
Equally important is the ability of a caregiver to maintain a high level of activity to keep pace with their patient. This skill is of critical importance when helping a patient through a crisis situation.
While caregivers are essential to supporting the management of schizophrenia, the burden caregivers carry often has a tremendous negative impact on their quality of life.
Increased functional impairment of patients with schizophrenia results in a higher burden on caregivers. Indeed, the majority of caregivers endure a moderate-to-severe or severe level of burden.
Older age, female sex, lower education level, unemployment, and low income are common characteristics among caregivers with high burden.
Women more frequently serve as caregivers for patients with disabilities, which likely correlates with this higher level of burden.
Caregiver education and support are vitally important. Educated caregivers can identify and apply information and resources in a more effective manner than caregivers with less education.
Lower income presents a challenge in not just paying for needed services, but it is also reflective of the difficulties caregivers have in maintaining stable housing and employment.
Of note, the relationship between a caregiver and a patient directly relates to perceived burden. Those who are caregivers for a spouse report a higher burden than those caring for a parent, child, or sibling.
This difference may be attributed to the grief associated with a compromised marital partnership and associated loss of spousal support.
The role of caregivers in schizophrenia management is of tremendous importance in maintaining a patient’s quality of life and ensuring quality outcomes.
While the benefits of caregivers are clear, it is important to remain aware of the burden they may experience.
The vital need for caregiver education and support, the appropriate use of respite services, and caregiver peer support are critical factors in avoiding caregiver burnout.
The role of caregivers is multidimensional for patients with schizophrenia but ultimately allows a holistic approach to improve safety, stability, and quality of life.
I want to thank you for joining me in this review of the vital role of caregivers in schizophrenia management.
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