ArticleInternational journal of qualitative studies on health and well-being2020
Awareness of dementia and coping to preserve quality of life: a five-year longitudinal narrative study.
Article in International journal of qualitative studies on health and well-being, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
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Who cites it
10 citing papers in PubMed.
- Coping Styles Predict Timing of Dementia Diagnosis: Evidence From DETERMIND.International journal of geriatric psychiatry · 2026Article
- Spontaneous conversations as data in young-onset dementia research: a qualitative study.Frontiers in dementia · 2026Article
- Understanding illness awareness in Alzheimer's disease: a qualitative study with patient-caregiver dyads in Colombia.Frontiers in aging neuroscience · 2026Article
- Unraveling impaired awareness: experiences of people with dementia, Huntington's disease and Korsakoff's syndrome, and their informal caregivers.BMC geriatrics · 2025Article
- "It may just be aging": illness representations of Brazilians with Alzheimer's disease.Cadernos de saude publica · 2025Article
- Exploring the lived experience: impact of dementia diagnosis on individuals with cognitive impairment - a qualitative study.BMC geriatrics · 2024Article
- The mediating role of early maladaptive schemas on the relationship between illness perception and pain coping strategies among adolescents diagnosed with migraine.Frontiers in neurology · 2023Article
- Factors associated with change over time in quality of life of people with dementia: longitudinal analyses from the MODEM cohort study.BMC geriatrics · 2022Article
- Does awareness of condition help people with mild-to-moderate dementia to live well? Findings from the IDEAL programme.BMC geriatrics · 2021Article
- Awareness and cognitive rehabilitation in Alzheimer's disease and frontotemporal dementia.Alzheimer's & dementia (New York, N. Y.)Article
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Authors and funding
3 authors.
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Abstract
purposeTo examine how people (<65 years) with young-onset dementia (YOD) express awareness of dementia and how they seem to handle awareness as a strategy to preserve quality of life over time.
methodA longitudinal qualitative study with individuals with YOD was performed with interviews every 6 months over 5 years for a maximum of 10 interviews. The interviews were analysed by modified grounded theory adapted to narrative inquiry.
resultsAwareness is a complex, multidimensional concept. Awareness of dementia is predisposed by personality, life history and established coping styles. The main coping styles during dementia-live in the moment, ignore the dementia, and make the best of it-seem to be rather consistent throughout disease progression. Transitions in the life situation may change the individual's awareness of dementia.
conclusionUnawareness of dementia may have an important adaptive function for preserving quality of life. Increasing awareness of dementia must be approached with reflexivity and great sensitivity.
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