Spreadbury, John H. and Kipps, Christopher (2019) Measuring younger onset dementia: What the qualitative literature reveals about the ‘lived experience’ for patients and caregivers. Dementia, 18 (2), 579-598. (doi:10.1177/1471301216684401).
Abstract
Background: The qualitative research on young onset dementia is providing insights about the ‘lived experience’ of patients and caregivers. However, findings from these studies have seldom been integrated into descriptive overviews. Our aim was to search the qualitative research, to integrate the qualitative findings, and offer an account of the lived experience for patients and caregivers.Method: The search of the qualitative research formed part of a broader comprehensive literature search investigating salient measurement issues in the young onset dementia psychosocial research. Five electronic databases were searched (Medline, CINAHL, PsycINFO, Embase, the Cochrane Library) plus supplementary searching of reference sections and use of online search engines. We identified 23 qualitative articles.Results: In the pre-diagnostic period, patients experience changes in cognition and functioning but may be uncertain about changes and their significance. Caregivers may observe changes, think of explanations, and are important in instigating medical intervention. Obtaining a diagnosis may be a demanding process and the possibility of dementia may not be anticipated. In the postdiagnostic period, patients and caregivers use several strategies to cope and adjust. Patients can withdraw from established responsibilities while caregivers assume compensatory roles/duties. Patients perceive changes in their identity while caregivers perceive changes in the caregiver– patient relationship. Both can experience grief, isolation, and stigma.
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- Faculties (pre 2018 reorg) > Faculty of Medicine (pre 2018 reorg)
- Current Faculties > Faculty of Medicine > Clinical and Experimental Sciences
Clinical and Experimental Sciences - Faculties (pre 2011 reorg) > Faculty of Medicine Health & Life Sciences (pre 2011 reorg) > Psychology (pre 2011 reorg)
Current Faculties > Faculty of Environmental and Life Sciences > School of Psychology > Psychology (pre 2011 reorg)
School of Psychology > Psychology (pre 2011 reorg)
Current Faculties > Faculty of Medicine > Cancer Sciences > Psychology (pre 2011 reorg)
Cancer Sciences > Psychology (pre 2011 reorg)
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