Tardive dyskinesia (TD) can substantially impair patients’ physical, psychological, social, and occupational functioning, particularly among individuals treated with dopamine receptor–blocking agents for schizophrenia, bipolar disorder, or major depressive disorder. Although TD is often assessed as a patient-level adverse effect, its impact may extend well beyond the patient. Caregivers often assist with daily activities, monitor symptoms, support treatment adherence, and observe functional consequences that patients themselves may underreport or fail to notice. A paper published in the Journal of Patient-Reported Outcomes in 2023 examined the burden of TD from the perspective of unpaid caregivers in the United States.

This online survey included 162 unpaid caregivers of patients with TD and schizophrenia, bipolar disorder, and/or major depressive disorder. Caregivers had provided care for at least 3 months and reported on the 7-day impact of TD on the cared-for patient’s physical, psychological, and social functioning, as well as the impact of TD-related caregiving on their own psychological well-being, daily activities, and professional life. Caregivers were, on average, 40 years old, while the cared-for patients were older, with a mean age of 62.6 years. Most caregivers were caring for a parent or guardian, and most had been providing care for 1 to 10 years.

Overall, caregivers reported substantial patient burden. Across physical, psychological, and social domains, 82.7% of caregivers indicated that TD had a severe impact on the cared-for patient. More than 90% reported moderate-to-severe impact on sleep, exercise, and household chores, while more than 80% reported moderate-to-severe impact on patient independence and ability to work. Psychological effects were also prominent: more than 80% of caregivers reported that patients sometimes, often, or always felt frustrated, sad, worried, unmotivated, or embarrassed because of TD. Social functioning was also affected, with more than three-quarters of caregivers reporting that TD interfered with patients’ ability to socialize remotely or in person or made it difficult to leave the house.

Caregiver burden was also notable. Nearly 1 in 4 caregivers reported severe impact across caregiving-task, psychological well-being, and daily-activity domains. Common caregiving tasks included grocery shopping, meal preparation, medication management, household chores, and driving. Although many caregivers did not rate any individual caregiving task as highly burdensome, cumulative burden was evident. More than one-third often or always felt anxious or worried because of the patient’s TD, and sizable proportions reported feeling sad, overwhelmed, overburdened, stressed, or strained.

TD-related caregiving also affected work and productivity. Among employed caregivers, TD caregiving was associated with 13.8% work time missed, 44.0% impairment while working, and 49.5% overall work impairment. Caregivers also reported 46.4% overall activity impairment. Work impact was particularly high among caregivers of patients with underlying major depressive disorder, who reported 57.1% overall work impairment and 53.3% activity impairment.

These findings suggest that TD should be conceptualized not only as a movement disorder affecting the patient, but also as a condition with broader family, caregiver, and societal consequences. For clinicians, caregiver input may be especially useful when assessing TD severity, functional impairment, treatment response, and safety concerns such as dysphagia or choking risk. The results also underscore the importance of proactively asking caregivers about burden, emotional strain, and work impairment, particularly when TD symptoms are moderate to severe.

This study has limitations, including reliance on caregiver report, potential recall and selection bias, absence of a comparison group of caregivers of patients without TD, and possible difficulty separating TD-related burden from burden associated with underlying psychiatric illness. Caregivers in this sample may also have been more highly educated and more aware of TD than the general caregiver population, as study participation required recognition of TD, which may limit generalizability.

Nevertheless, the findings highlight that TD can impose substantial incremental burden on caregivers, even when individual caregiving tasks are not perceived as burdensome. Routine screening for TD, early recognition, and evidence-based treatment may therefore have benefits that extend beyond symptom reduction for patients to improved functioning and reduced strain for caregivers.

References:
Jain R, et al. J Patient Rep Outcomes. 2023 Nov 28;7(1):122. Abstract
Jackson R, et al. Neuropsychiatr Dis Treat. 2021;17:1589-1597.