Resilience Promoting Social Networks Among Unpaid Dementia Caregivers: An Exploratory Project Protocol

Abstract

Background Unpaid caregivers of people living with dementia often experience lower levels of perceived life satisfaction and higher rates of depression and anxiety compared to those caring for individuals without Alzheimer’s Disease or Related Dementias. While research on unpaid caregiver well-being and satisfaction has primarily focused on the characteristics of people living with dementia and their dyadic relationships, it has not adequately explored the role of social networks in supporting unpaid caregiver well-being. In this study, we aim to fill this gap by taking an egocentric social network approach to understand the multiple dimensions of social relations among unpaid caregivers of people living with Alzheimer's Disease or Related Dementia. Methods We will conduct a mixed-methods, two-year exploratory study that involves a structured survey-based telephone interview in year one and semi-structured interviews in year 2 with caregivers of persons living with dementia (PLWD) recruited through community and healthcare partners. Participants will participate in one 60-minute interview in year 1 (n = 100) and a 45 to 60-minute semi-structured interview in year 2 (n = 75). Eligibility for caregivers includes being an unpaid caregiver, aged 40 years or older, residing and providing care in Arizona or Nevada. The survey consists of questions about caregiver and care recipient demographics, caregiver background, caregiver stress, resilience, well-being, and egocentric social network data. Network composition attributes, such as tie strength, the function of the relationship, and reliance on network members, will also be assessed. In year 2, qualitative semi-structured interviews will supplement these quantitative measures to understand network selection, perceived network changes over time, and network strength. Discussion This study aims to identify new insights into the attributes of unpaid caregivers caring for someone living with dementia and to understand which social network compositions are most effective in supporting caregiver well-being and resilience. Our findings will offer valuable insights into the types and qualities of support networks that can promote resilience and well-being among unpaid caregivers of persons living with dementia. The findings will be beneficial to understand how different roles, such as age, relationship type, and quality, shape experiences and outcomes associated with caregiving. Understanding which network attributes contribute to caregiver resilience and well-being will support the development of interventions promoting effective support networks for unpaid caregivers of people living with dementia.