Empathy in Motion: Unravelling the Layers of Caregiver Burden in Functional Movement Disorders
Pushpraj Poonia1, Ishreen Ahuja2, Abhinav Singh1
1GMCH, Chandigarh, 2Department of Medicine, GMCH, Chandigarh
Objective:
This study aims to assess the caregiver burden associated with patients diagnosed with functional movement disorders, focusing on the emotional, financial, and social aspects of caregiving.
Background:

Functional movement disorders pose complex challenges for both patients and caregivers. Despite the critical role caregivers play, their burden, especially concerning employment and social life, remains inadequately explored. This research addresses this gap through a comprehensive analysis of caregivers' experiences.

Design/Methods:

A cross-sectional study design was employed, involving 250 caregivers selected through stratified random sampling. Caregivers, representing diverse demographics, participated in structured interviews and surveys. The Zarit Burden Interview, the Hospital Anxiety and Depression Scale, and customized financial strain questionnaires, were utilized as metrics of caregiver burden. Qualitative interviews provided insights into caregivers' experiences, emotions and challenges.

Results:

Caregivers exhibited significant burden, with 82% reducing work hours(by 2.56 hours on average) and 25% quitting jobs(13:1 ratio of female:male caretakers) to provide full-time care. Financial strain was evident due to reduction of work-hours and one member quitting job, impacting caregivers' financial stability. Social isolation was prevalent, as 68% reported being unable to enjoy social events due to caregiving demands. Qualitative analysis revealed caregivers' sentiments, emphasising the need for "more understanding workplaces" and "someone to care for the patient while they are away". the financial-burden was more evident in lower-socio-economic strata and social-burden in higher-socioeconomic-strata.

Conclusions:

This study highlights the profound impact of caregiving for patients with functional movement disorders on employment, financial stability, and social interactions. Caregivers' sacrifices, including reduced work hours and social isolation, underscore the urgent need for supportive Human-resource policies. Employers must recognise and accommodate caregivers' unique needs. Societal initiatives like establishment of schemes in order to keep a check on care-giver’s mental health can prove to be beneficial.

10.1212/WNL.0000000000206077