Understanding Caregiver Challenges: A Comprehensive Exploration of Available Resources to Alleviate Caregiving Burdens.

introductionAging is associated with significant alterations in physical, cognitive, and emotional functions, predisposing older adults to multimorbidity and functional dependence that necessitate assistance with the activity of daily living (ADL) and medical care from caregivers. With a substantial increase in the aging population comes a growing demand for caregivers, particularly informal caregivers who provide unpaid care to older adults with complex needs. However, they face substantial physical, emotional, and financial burdens as they balance caregiving with their family and job demands.

aimThis study aimed to explore key challenges faced by caregivers and the resources they need to address their caregiving burden. Additionally, we wanted to identify whether the number of years of caregiving is associated with their burden. These study findings will inform the design and development of our smartphone app which aims to alleviate the burden of diseases for older adults and the burden of caregiving for caregivers.

methodsFrom October to December 2022, we invited 80 self-reported caregivers for an anonymous online survey. The caregivers were located in three cities (Galveston, Houston, and Dallas in Texas) and were affiliated with the International Buddhist Progress Society-Dallas (IBPS Dallas) and the University of Texas Medical Branch (UTMB) Osher Lifelong Learning Institute (OLLI). The collected data were subjected to content analysis through systematic examination for meaningful patterns, themes, and insights. Individual characteristics and caregiving experiences were divided by years of care: 0-4 vs. 5+ years to investigate whether the caregiving burden was affected by the duration of caregiving.

resultsThe results showed several important insights, including gender dynamics and traditional norms, the advanced age of caregivers, and the prevalent health conditions they are managing. Caregivers' roles ranged from medical (insurance and medication assistance, etc.) at 63.8% to the provision of non-medical related resources (basic needs, utility, transportation, financial assistance, etc.) at 96.3%. Caregiving is also associated with some positive outcomes, such as changes in knowledge and skills (77.5%) with more confidence in ADL support tasks and a deepening of caregiver/care recipient dyad relationships (56.3%). Some faced challenges in navigating complex healthcare and social service systems and others experienced neglect and received inadequate support from the government-supported social services (33.8%). However, there is no significant variation between those with 0-4 and 5+ years of experience across all identified themes, suggesting that the burdens and resource needs of caregivers can manifest early on and are likely to persist beyond the five-year mark.

conclusionOur findings reveal that the number of caregiving years does not significantly influence the types of caregiving burden experienced by caregivers or the resources they require. This indicates the need for providing long-term support to older adults with chronic conditions from the early stage, while also emphasizing the critical role of immediate assistance for caregivers to alleviate caregiving burden. A free-of-charge technology like our smartphone app has the potential to effectively reduce stress for caregivers, offering them support at any time and place. Future studies will focus on evaluating the outcomes of caregivers after utilizing our app.