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Title: Making Decisions About Long-Term Institutional Care Placement Among People With Dementia and Their Caregivers: Systematic Review of Qualitative Studies.
Austin Authors: Teng, Claris;Loy, Clement T;Sellars, Marcus ;Pond, Dimity;Latt, Mark D;Waite, Louise M;Sinka, Victoria;Logeman, Charlotte;Tong, Allison
Affiliation: Centre for Education and Research on Ageing, Concord Hospital, The University of Sydney, New South Wales, Australia
School of Medicine and Public Health (General Practice), University of Newcastle, Australia
Sydney Medical School, The University of Sydney, New South Wales, Australia
Sydney School of Public Health, The University of Sydney, New South Wales, Australia
Centre for Kidney Research, The Children's Hospital at Westmead, New South Wales, Australia
Advance Care Planning Australia, Austin Health, Heidelberg, Victoria, Australia
Issue Date: 15-May-2020 2019-05-29
Publication information: The Gerontologist 2020; 60(4): e329-e346
Abstract: People with dementia become increasingly dependent on others for care as cognition declines. Decision making about placement of people with dementia into long-term institutional care can be emotionally complex. The objective of this review is to describe experiences and perspectives of people with dementia and their family caregivers in making decisions about institutional care placement. MEDLINE, Embase, PsycINFO, and CINAHL were searched from inception to August 2018. Thematic synthesis was used to analyze results. We included 42 studies involving 123 people with dementia and 705 family caregivers from 12 countries. We identified five themes: ensuring safety (avoiding injury due to frailty, protecting against dangerous behaviors, preventing aggressive encounters), reaching breaking point (insufferable burden of caregiving, needs exceeding capabilities, intensifying family conflict, loneliness and isolation, straining under additional responsibilities, making extreme personal sacrifices), vulnerability in lacking support (ill-prepared for crisis, unable to access professional expertise, unpredictable prognostic trajectory, uncertainty navigating health care services, pressured by limited placement opportunities, high cost of placement, resenting loss of autonomy), avoiding guilt of abandonment (sharing accountability, mitigating against disagreement and stigma, reluctance to relinquish caregiving, seeking approval), and seeking reassurance and validation (preserving personhood and former identity, empowerment through engagement, assurance of care quality, acceptance from other care residents). People with dementia and family caregivers feel vulnerable, disempowered, and guilty in decision making about institutionalization. Person-centered communication and support strategies that foster confidence and reassurance are needed to assist people with dementia and caregivers to make decisions about placement into long-term institutional care settings.
DOI: 10.1093/geront/gnz046
ORCID: 0000-0002-8299-0313
PubMed URL: 31141133
Type: Journal Article
Subjects: Decision making
Long-term care
Systematic review
Appears in Collections:Journal articles

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