The experiences of people with dementia and their caregivers in dementia diagnosis

Yan Lian, Dongxia Xiao, Fan Zeng, Xianmu Wu, Zhen Wang, Hui Ren

    Research output: Contribution to journalArticlepeer-review

    21 Citations (Scopus)


    Background: People can live well with dementia if they are diagnosed early and receive early interventions and appropriate dementia management and care. However, dementia is currently under-detected and under-diagnosed. The diagnosis rate is around 50% only in higher-income countries and 5-10% only in low- and middle-income countries. Studies on consumers' experiences in engaging in dementia diagnosis in a socio-cultural context are much needed in order to generate research evidence to inform person-centered dementia care and services. Objective: The aim of the study was to understand the experiences of people with dementia and their caregivers in engaging in dementia diagnosis. Methods: An interpretative study design informed by Gadamer's hermeneutic principles was applied to the present study to achieve the aim of the study. The study was strengthened by applying a social ecological framework to the study design. In total, 23 participants contributed to the interviews or focus group. Thematic analysis was applied to data analysis. Results: Four themes were determined from data and described as: Capabilities to detect the memory loss in an early stage, perceptions and beliefs of dementia in the community, different journeys toward the diagnosis and expectations of a smooth journey for others. These findings illuminate a social ecological perspective of improving early detection and timely diagnosis of dementia in the community settings. Conclusion: The findings of this study have implications for policy, resource, and practice development. Consumers expect that government subsidized dementia care services in primary care and specialist care settings are needed in order to enable consumer-driven timely diagnosis and dementia management in home care settings.

    Original languageEnglish
    Pages (from-to)1203-1211
    Number of pages9
    JournalJournal of Alzheimer's Disease
    Issue number4
    Publication statusPublished - 2017


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