Treatment-resistant schizophrenia (TRS) is schizophrenia that does not respond to at least two different courses of antipsychotic therapy, resulting in the persistence of at least two moderate or severe positive symptoms – (hallucinations, delusions, disorganized speech, or suspiciousness/persecution).
Individuals with TRS require substantial emotional, logistical and financial support from non-professional, informal caregivers who in many cases are family members. No investigation has previously evaluated the burden of providing such care on the caregiver, and the study presented in the poster presented at APA 2018 was designed to address this information gap.
Twenty-seven caregivers from five different regions in the US took part in the study. All had provided direct care for at least 4 hours a week and indirect “on-call” care for over 20 hours a week for a person with TRS for at least 1 year. In 24 cases, the care was for a family member. The mean age of care recipients was 47 years and 52% lived with the caregiver; only two were in full-time employment.
The caregivers took part in semi-structured 90-minute discussions in eight focus groups on their experiences of:
- caregiving responsibilities
- persistent TRS symptoms and their impact on themselves and the care recipient
- antipsychotic therapy
Nearly 80% of caregivers are on-call day and night
Most caregivers (78%) were women and 63% were employed full-time. They reported an average of:
- 37 hours/week of direct care – for example, coordinating physician/therapist appointments, managing medications and providing emotional and social support
- 147 hours/week “on-call” regardless of where they were or what they were doing (78% were available 24/7)
Providing continuous emotional support is particularly challenging for caregivers
Being “on-call” and providing continuous emotional support, for example reassurance in relation to positive symptoms, were described as the most challenging aspects of providing care.
Among the caregivers, 85% and 63% reported that stress and frustration associated with caregiving had an adverse effect on their mental/emotional wellbeing and physical health, respectively.
The care recipients required financial assistance from 56% of caregivers; and some caregivers had reduced their work commitments in response to the demands of caregiving.
Suspiciousness/persecution is the most challenging persistent symptom
The caregivers described the most common persistent symptoms experienced by their care recipients as auditory hallucinations, agitation/irritability/hostility, and suspiciousness, which occurred in 89%, 81% and 78%, respectively.
Suspiciousness/persecution was cited as the most challenging persistent symptom by 70% of caregivers because it affects their own social interactions and abilities to live like others and to reason with or calm down the care recipient.
Disorganized speech and delusions were reported as challenging persistent symptoms by around 40% of caregivers.
Caregivers’ social interactions and ability to live “normally” are affected by persistent suspiciousness/persecution
The relentless psychotic symptoms and agitation, irritability, and hostility cause considerable worry for caregivers in terms of the safety of recipients and others.
Most caregivers (85%) reported that their care recipient with schizophrenia initially responded to antipsychotic therapy, before the failure to respond; 15% (four caregivers) reported that the care recipient had never responded to treatment. An emotional toll and extreme frustration were associated with medication failures for both caregivers and care recipients.
All focus groups reported that any new treatment that could improve their care-recipient’s symptoms/behaviors would likely improve quality of life for both themselves and their care-recipient.
The study presented in this poster was supported by H. Lundbeck A/S.