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[P3–490]: RELATIONSHIP BETWEEN FILIAL OBLIGATION AND DEPRESSION THROUGHOUT THE STAGES OF ALZHEIMER DISEASE: A PRELIMINARY STUDY OF BRAZILIAN CAREGIVERS WITH PARENTS SUFFERING FROM DEMENTIA
Author(s) -
Herrera Manuel J.,
Paulson Daniel L.,
Irurita Carolina,
Silva Falcao Deusivania V.
Publication year - 2017
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1016/j.jalz.2017.06.1709
Subject(s) - obligation , psychology , dementia , portuguese , clinical psychology , family caregivers , disease , gerontology , psychiatry , medicine , linguistics , philosophy , pathology , political science , law
Background:As a chronic progressive brain disease, dementia eventually leads to long-term dependence and high burden of care. Most studies on dementia care are from western settings done in institutions where care is provided by professionals. In the Philippines and most of Asia, where low to middle income families have limited access to support services and formal dementia care, dementia care happens in the home until the patient’s demise usually by co-resident family members who become informal caregivers. With our care situation, our National Dementia Plan must embrace policies and support systems particular to our culture and circumstances. In support for the plan, we examined family caregivers’ understanding of dementia, their adaptive strategies and challenges, and how cultural factors influence care practices.Methods:In this qualitative study, we conducted semi-structured in-depth interviews with twelve informal family caregivers co-residing with their patients. Data were coded, organized into themes and categories and subjected to content analysis. Results: Caregivers’ characterization of “pag-uulyanin” or dementia and their explanatory model of illness are, apart from being natural to aging, consistent with some concepts in clinical medicine that dementia is associated with genes, depression and bereavement, brain injury and stressful life. Despite limitations of space in the homes, caregivers recreate the physical environment to accommodate the needs and safety of their patients, which are regarded as primordial in caregiving. Caregiving is unbound by space and made virtual by technology allowing distant caregiving through talk therapy by overseas family members. Burden of care is mitigated by consensus decisions, financial cooperation, and shared care and responsibility which are cultural expectations. Caregiver distress is most apparent when such expectations are unmet. Economic scarcity compounded by increased expenditure due to dementia and absent social (community and government) support are challenges identified. Conclusions: Family caregivers, despite no formal training, have reasonable understanding of dementia with provisioning and safety as the goal of care. Their adaptive strategies are emergent on kinship, and failed expectation from family is a major source of distress. Our National Dementia Plan must integrate our culture of caregiving and address scarcity of economic and social support in dementia care.