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

Objectives: In the Ontario Neurodegenerative Disease Research Initiative (ONDRI), we aimed to ask and answer: (1) How many and what types of burdens are captured by the Zarit’s Burden Interview (ZBI)? (2) Do we see categorical or spectrum-like effects for burden(s)? and (3) Which if any demographic, clinical, and cognitive measures are related to burden(s)?Methods: N = 504 participants and their study partners (e.g., family, friends) across: Alzheimer’s disease/mild cognitive impairment (AD/MCI; n = 120), Parkinson’s disease (PD; n = 136), amyotrophic lateral sclerosis (ALS; n = 38), frontotemporal dementia (FTD; n = 53), and cerebrovascular disease (CVD; n = 157). Study partners provided information about themselves, and information about the clinical participants (e.g., activities of daily living). We used Correspondence Analysis to identify types of caregiving concerns in the ZBI, then identified relationships between those concerns and demographic and clinical measures, and a cognitive battery.Results: We found three components in the ZBI. The first was “overall burden” and was (1) strongly related to increased neuropsychiatric symptoms and decreased independence in activities of daily living, (2) moderately related to cognition, and (3) showed little-to-no differences between disorders. The second and third components showed 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: Caregiving concerns are individual experiences and emphasize the importance of support for management of activities of daily living and neuropsychiatric symptoms, and underscore individualized needs for caregiving assessment and education.