A mixed methods approach to understanding dementia caregiver stress when caring for a person with empathy loss

About This Grant

Project Summary/Abstract The research proposed for this National Research Service Award comprehensively evaluates the complex relationship between empathy loss in persons living with behavioral variant frontotemporal dementia (PLwFTD) and caregiver stress in spouses of PLwFTD. We posit that reduced empathy in the PLwFTD contributes to a loss of emotional connection, which underlies caregiver stress in bvFTD. We will evaluate the impact of caregiver social support as a moderator for this relationship. Empathizing and connecting with a loved one is integral to close relationships and is important to buffer stress. Therefore improving our understanding of how this prevalent symptom impacts caregiver stress is imperative to inform the development of caregiver support interventions. This mixed methods study proposes a convergent parallel design with the following aims: 1a) evaluate the relationship between the components of empathy loss (perspective-taking and empathic concern) and caregiver stress; 1b) Identify key predictive secondary stressors (e.g. emotional connection) and psychosocial resources that influence this relationship; 2) Describe how caregivers perceive empathy in their loved one and how changes in empathy affect their own psychological health and ability to provide care; 3) Create a comprehensive understanding of how and why empathy loss impacts caregiver stress and the role that emotional connection plays in this relationship. The proposed aims align with the NIA strategic plan goals B2 and D5 to illustrate the social and psychological factors that impact health and can address the unique needs of PLWD and their caregivers. This individual NRSA application aims to provide the applicant with research training to address aspects of interpersonal relationships affected by dementia, focusing on empathy loss in PLwFTD and caregiver stress. To achieve this goal, training will occur in a resource-rich environment with support from a multidisciplinary mentorship team with expertise in dementia, caregiving, aging, policy and ethics, biostatistics, and mixed methods research. The applicant proposes specific goals to advance training, including 1) Gain expert knowledge related to understanding and measuring subjective experiences, such as emotions, in persons living with dementia (PLWD); 2) Expand methodological and analytical skills required to conduct rigorous mixed methods research, and 3) Develop foundational skills to develop a program of ethical independent research with PLWD and their care partners, and gain professional development skills to advance in a rigorous academic environment.