Impact of Tardive Dyskinesia on Caregivers’ Well-Being and Daily Life

An online survey of caregivers for patients with tardive dyskinesia (TD) was developed to assess the impact of caretaking on psychological well-being, caregiving tasks, and daily activities, according to research recently presented at Psych Congress 2021, held from October 29 through November 1, 2021, in San Antonio, Texas.

Surveyed caregivers were required to be unpaid for at least 3 months. Responses were rated according to the impact of TD on psychological well-being, caregiving tasks, and daily activities from 1 (least impact) to 5 (most impact). The impact of TD on professional life was assessed using the Work Productivity and Activity Impairment Questionnaire.

The surveyed caregivers (N=162) represented the diversity of races/ethnicities in the United States, although caregivers with higher education may have been over-represented (74.7% held a bachelor’s degree or higher). Approximately 56% of the surveyed caregivers were caring for patients who they identified as a parent or guardian. A total of 35.2% of caregivers reported the patient as having severe or very severe symptoms, while 69.7% reported that the patient was either “quite a bit” or “very much bothered” by their symptoms.

Among the surveyed caregivers, 23.5% reported that the patient’s TD had a severe impact (defined as a score ≥4 on ≥1 item within each domain) across well-being, caregiving tasks, and daily activities. Mean (SD) scores were 2.5 (0.9) for psychological well-being, 2.1 (1.1) for tasks and 2.7 (0.9) for daily activities. Concerning psychological well-being, 34.6% of caregivers reported that they either often or always felt anxious or worried due to the patient’s TD; 29.0% reported feeling sad or unhappy, 23.5% reported feeling overwhelmed, 22.8% reported feeling overburdened, and 21% reported feeling stressed or strained. Employed caregivers (n=136, 84%) experienced a 49.5% overall work impairment. These individuals reported missing 13.8% of work time and reported impairment 44.0% of the time while at work.

The study investigators conclude, “Although most caregivers did not consider helping patients with individual tasks burdensome, responses regarding impact on their own activities and psychological well-being reflect a cumulative burden of supporting patients with TD. These results highlight the importance in recognizing the incremental impact of TD on caregivers.”

Disclosure: This clinical trial was supported by Teva Pharmaceutical Industries. Please see the original reference for a complete list of authors’ disclosures.

Reference

Jain R, Goldschmidt D, King S, Popadic L, Wilhelm A, Leo S. Caregiver burden of tardive dyskinesia in the United States: a survey of impact on caregiving tasks, psychological well-being, and daily activities. Presented at: Psych Congress 2021; October 29-November 1, 2021; San Antonio, Texas. Poster 43.