Family Caregivers of Veterans Experience High Levels of Burden, Distress, and Financial Strain

Abstract

Background/objectives: To describe the caregiving experiences and physical and emotional needs of family members and friends who provide care to veterans with mental, physical, and cognitive comorbidities.

Design: Cross-sectional study.

Setting: National telephone surveys administered from 2017 to 2019.

Participants: Family caregivers of veterans enrolled in the Veterans Affairs (VA) Program of General Caregiver Support Services between October 2016 and July 2018 who responded to a telephone survey (N = 1,509; response rate = 39%).

Measurements: We examined caregiver burden, depressive symptoms, financial strain, satisfaction with care, amount and duration of caregiving, life chaos, loneliness, and integration of caregiver with the healthcare team using validated instruments. We also collected caregiver demographic and socioeconomic characteristics and asked caregivers to identify the veteran's condition(s) and provide an assessment of the veteran's functioning.

Results: Average caregiver age was 62.2 (standard deviation [SD] = 13.7) and 69.8 (SD = 15.6) for veterans. Among caregivers, 76.7% identified at White, and 79.9% were married to the veteran. Caregivers reported having provided care for an average of 6.4 years and spending on average 9.6 hours per day and 6.6 days per week providing care. Average Zarit Subjective Burden score was 21.8 (SD = 9.4; range = 0-47), which is well above the cutoff for clinically significant burden (>16). Caregivers reported high levels of depressive symptoms; the sample average Center for Epidemiologic Studies Depression 10-item Scale score was 11.5 (SD = 7.1; range = 0-30). Caregivers also reported high levels of loneliness and financial strain.

Conclusion: Caregivers who care for veterans with trauma-based comorbidities reported intensive caregiving and significant levels of distress, depressive symptoms, and other negative consequences. These caregivers require comprehensive support services including access to health care, financial assistance, and enhanced respite care. Planned expansion of VA caregiver support has the potential to provide positive benefits for this population and serve as a model for caregiver support programs outside the VA health care system.

Keywords: caregiver; caregiver support; family caregiver; informal caregiver; veteran.

Figure 1.

Study flow. ¹Based on the 2017 and 2018 raw Caregiver Application Tracker data pulls. ²Once initial recruitment goals of 1,500 were met, study team ceased recruitment. ³Ineligible reasons include if recruitment letter was returned with no forwarding address and no valid phone number available, veteran or caregiver deceased after data pull, caregiver no longer providing care. ⁴Exclusion reason: baseline never completed. ⁵Withdrew/suspended includes if the caregiver declined to continuing to participate in the survey after beginning the survey (eg, changed mind about participating, confidentiality/data concern, or too busy/no time). PGCSS, Program of General Caregiver Support Services.