Caregivers’ experiences supporting Veterans with Parkinson’s Disease

Abstract Background Parkinson’s Disease (PD) is the second most common neurodegenerative condition in the United States. PD affects approximately 110,000 Veterans, many of whom have service-connected toxic exposures. While caregivers play an integral role in supporting Veterans with PD, they report feeling burdened by the demands of their role. There are a myriad of motor and non-motor symptoms associated with PD, including cognitive impairment, anxiety, and depression. These symptoms significantly impact quality of life for both Veterans and their caregivers. This study aimed to describe the experiences of caregivers for Veterans with PD, focusing on their responsibilities, supports required, and the impacts of caregiving on their quality of life. Methods We conducted a descriptive qualitative study involving semi-structured interviews with 12 caregivers (spouses and adult children) for Veterans living with PD who received care at VA Medical Centers across the United States. Data were analyzed using a team-based thematic approach with Atlas.ti software, incorporating both deductive and inductive coding to ensure consistency and in-depth analysis. Results We identified four major themes illustrating caregivers’ experiences: (1) being a caregiver for a Veterans with PD was a full-time responsibility with purpose and meaning, involving complex tasks such as medication management, hygiene assistance, and medical care coordination; (2) caregiving led to strain in parts of caregivers’ lives, negatively impacting caregivers’ abilities to attend to self-care, maintain social relationships, and connect emotionally with their spouses; (3) caregivers utilized resources to reduce burden, including VA-funded home health aides and support groups; and (4) gaps existed in supporting caregivers, primarily due to a lack of knowledge regarding PD progression and awareness of available VA benefits. Conclusion Caregivers provided essential support but experienced substantial burdens that necessitate system-level interventions. While the VA offers various programs caregivers can access through referrals from palliative care providers (i.e. VA Caregiver Support Program, VA Veteran-Directed Care Program, and VA Home Health Program), barriers to resource utilization, specifically a lack of awareness and insufficient education regarding PD progression—must be addressed. Integrating palliative care into PD management offers a structured approach to bridge these gaps, facilitating earlier education and improved resource navigation to enhance quality of life for both Veterans and their caregivers.