Caregiving concerns and clinical characteristics across neurodegenerative and cerebrovascular disorders in the Ontario neurodegenerative disease research initiative.
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Beaton Derek, McLaughlin Paula M, Orange Joseph B, Munoz Douglas P, Mandzia Jennifer, Abrahao Agessandro, Binns Malcolm A, Black Sandra E, Borrie Michael, Dowlatshahi Dar, Freedman Morris, Fischer Corinne E, Finger Elizabeth C, Frank Andrew, Grimes David, Hassan Ayman, Kumar Sanjeev, Lang Anthony Edward, Levine Brian, Marras Connie, Masellis Mario, Pollock Bruce G, Rajji Tarek K, Ramirez Joel, Sahlas Demetrios J, Saposnik Gustavo, Scott Christopher J M, Seitz Dallas P, Strother Stephen C, Sunderland Kelly M, Tan Brian, Tang-Wai David F, Troyer Angela K, Turnbull John, Zinman Lorne, Swartz Richard H, Tartaglia Maria Carmela, Breen David P, Kwan Donna, Roberts Angela C, The Ondri Investigators
Аннотация
METHODS/DESIGN: 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 (ADL)). We used Correspondence Analysis to identify types of caregiving concerns in the ZBI. We 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 (NPI severity r = 0.586, NPI distress r = 0.587) and decreased independence in ADL (instrumental ADLs r = -0.566, basic ADLs r = -0.43), (2) moderately related to cognition (MoCA r = -0.268), and (3) showed little-to-no differences between disorders. The second and third components together showed four types of caregiving concerns: current care of the person with the neurodegenerative disease, future care of the person with the neurodegenerative disease, personal concerns of study partners, and social concerns of study partners.
CONCLUSIONS: Our results suggest that the experience of caregiving in neurodegenerative and cerebrovascular diseases is individualized and is not defined by diagnostic categories. Our findings highlight the importance of targeting ADL and neuropsychiatric symptoms with caregiver-personalized solutions.