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Caregiving concerns and clinical characteristics across neurodegenerative and cerebrovascular disorders in the Ontario neurodegenerative disease research initiative.
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.
Afiliação
  • Beaton D; Rotman Research Institute, Baycrest Health Sciences, Toronto, ON, Canada.
  • McLaughlin PM; Centre for Neuroscience Studies, Queen's University, Kingston, ON, Canada.
  • Orange JB; Nova Scotia Health Authority, Halifax, NS, Canada.
  • Munoz DP; Department of Medicine - Geriatrics, Dalhousie University, Halifax, NS, Canada.
  • Mandzia J; School of Communication Sciences and Disorders, Western University, London, ON, Canada.
  • Abrahao A; Canadian Centre for Activity and Aging, Western University, London, ON, Canada.
  • Binns MA; Faculty of Health Sciences, Western University, London, ON, Canada.
  • Black SE; Department of Biomedical and Molecular Sciences, Centre for Neuroscience Studies, Queen's University, Kingston, ON, Canada.
  • Borrie M; Department of Clinical Neurological Sciences, London Health Sciences Center, Western University, London, ON, Canada.
  • Dowlatshahi D; Department of Medicine (Division of Neurology), University of Toronto, Toronto, ON, Canada.
  • Freedman M; Hurvitz Brain Sciences Program, Sunnybrook Research Institute, University of Toronto, Toronto, ON, Canada.
  • Fischer CE; Rotman Research Institute, Baycrest Health Sciences, Toronto, ON, Canada.
  • Finger EC; Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada.
  • Frank A; Department of Medicine (Division of Neurology), University of Toronto, Toronto, ON, Canada.
  • Grimes D; Hurvitz Brain Sciences Program, Sunnybrook Research Institute, University of Toronto, Toronto, ON, Canada.
  • Hassan A; Department of Medicine, Division of Geriatric Medicine, Western University, Toronto, ON, Canada.
  • Kumar S; Department of Medicine, University of Ottawa, Ottawa, ON, Canada.
  • Lang AE; Ottawa Hospital Research Institute, Ottawa, ON, Canada.
  • Levine B; Rotman Research Institute, Baycrest Health Sciences, Toronto, ON, Canada.
  • Marras C; Department of Medicine (Division of Neurology), University of Toronto, Toronto, ON, Canada.
  • Masellis M; Keenan Research Centre for Biomedical Science, Li Ka Shing Knowledge Institute, St. Michael's Hospital, Toronto, ON, Canada.
  • Pollock BG; Department of Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, Western University, London, ON, Canada.
  • Rajji TK; Bruyere Research Institute, University of Ottawa, Ottawa, ON, Canada.
  • Ramirez J; Department of Medicine, University of Ottawa, Ottawa, ON, Canada.
  • Sahlas DJ; Ottawa Hospital Research Institute, Ottawa, ON, Canada.
  • Saposnik G; Northern Ontario School of Medicine, Clinical Science Division, Depart of Internal Medicine, Thunder Bay, ON, Canada.
  • Scott CJM; Centre for Addiction and Mental Health, Toronto, ON, Canada.
  • Seitz DP; Department of Psychiatry, University of Toronto, Toronto, ON, Canada.
  • Strother SC; Department of Medicine (Division of Neurology), University of Toronto, Toronto, ON, Canada.
  • Sunderland KM; Edmond J. Safra Program in Parkinson's Disease and the Morton and Gloria Shulman Movement Disorders Clinic, Toronto Western Hospital, Toronto, ON, Canada.
  • Tan B; Rotman Research Institute, Baycrest Health Sciences, Toronto, ON, Canada.
  • Tang-Wai DF; Department of Medicine (Division of Neurology), University of Toronto, Toronto, ON, Canada.
  • Troyer AK; Department of Psychology, University of Toronto, Toronto, ON, Canada.
  • Turnbull J; Edmond J. Safra Program in Parkinson's Disease and the Morton and Gloria Shulman Movement Disorders Clinic, Toronto Western Hospital, Toronto, ON, Canada.
  • Zinman L; Department of Medicine (Division of Neurology), University of Toronto, Toronto, ON, Canada.
  • Swartz RH; Hurvitz Brain Sciences Program, Sunnybrook Research Institute, University of Toronto, Toronto, ON, Canada.
  • Tartaglia MC; Centre for Addiction and Mental Health, Toronto, ON, Canada.
  • Breen DP; Department of Psychiatry, University of Toronto, Toronto, ON, Canada.
  • Kwan D; Department of Psychiatry, University of Toronto, Toronto, ON, Canada.
  • Roberts AC; Adult Neurodevelopment and Geriatric Psychiatry Division, Centre for Addiction and Mental Health, Toronto, ON, Canada.
  • The Ondri Investigators; Hurvitz Brain Sciences Program, Sunnybrook Research Institute, University of Toronto, Toronto, ON, Canada.
Int J Geriatr Psychiatry ; 37(6)2022 06.
Article em En | MEDLINE | ID: mdl-35633037
ABSTRACT

OBJECTIVES:

Caregiving burdens are a substantial concern in the clinical care of persons with neurodegenerative disorders. In the Ontario Neurodegenerative Disease Research Initiative, we used the Zarit's Burden Interview (ZBI) to examine (1) the types of burdens captured by the ZBI in a cross-disorder sample of neurodegenerative conditions (2) whether there are categorical or disorder-specific effects on caregiving burdens, and (3) which demographic, clinical, and cognitive measures are related to burden(s) in neurodegenerative disorders? 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.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Transtornos Cerebrovasculares / Doenças Neurodegenerativas / Demência Frontotemporal Tipo de estudo: Prognostic_studies Limite: Humans País/Região como assunto: America do norte Idioma: En Revista: Int J Geriatr Psychiatry Assunto da revista: GERIATRIA / PSIQUIATRIA Ano de publicação: 2022 Tipo de documento: Article País de afiliação: Canadá
Texto completo
Adicionar na Minha BVS
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Transtornos Cerebrovasculares / Doenças Neurodegenerativas / Demência Frontotemporal Tipo de estudo: Prognostic_studies Limite: Humans País/Região como assunto: America do norte Idioma: En Revista: Int J Geriatr Psychiatry Assunto da revista: GERIATRIA / PSIQUIATRIA Ano de publicação: 2022 Tipo de documento: Article País de afiliação: Canadá