Caregiving concerns and clinical characteristics across neurodegenerative and cerebrovascular disorders in the Ontario Neurodegenerative Disease Research Initiative

Abstract

Introduction: Informal caregivers for persons living with neurodegenerative disorders experience various types of stress and strain. Few studies have investigated the nature of caregiving concerns (“burdens”) and factors that contribute to those concerns, especially across multiple neurodegenerative and cerebrovascular disorders. Methods: The Ontario Neurodegenerative Disease Research Initiative (ONDRI) recruited participants with five neurodegenerative and cerebrovascular disorders (N = 504). Participants had study partners (family or friends) who provided information about themselves (e.g., the Zarit’s Burden Interview), as well as information about the clinical participants (e.g., activities of daily living). We used Correspondence Analysis to identify types of caregiving concerns in the Zarit’s, then identified relationships between those concerns and demographic, clinical, and cognitive measures.Results: We identified three components from the ZBI. The first was “overall burden” and was (1) strongly related to increases in neuropsychiatric symptoms and decreases in activities of daily living, (2) only moderately related to cognition, and (3) showed little-to-no differences between disorders. The second and third components revealed four types of caregiving concerns: current care of patient, future care of patient, personal concerns of study partner and social concerns of study partner. Discussion: We showed that caregiving concerns are multidimensional and individual experiences and emphasize the importance of support for the management of ADLs and neuropsychiatric symptoms, as well as individualized needs for caregiving assessment, education, training, and support strategies.