Study on timely diagnosis of dementia and support for caregivers of people with dementia in community care settings

Author: Yan Lian

Lian, Yan, 2019 Study on timely diagnosis of dementia and support for caregivers of people with dementia in community care settings, Flinders University, College of Nursing and Health Sciences

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Dementia is a syndrome caused by various diseases and conditions. People with dementia manifest progressive decline in ability to self-care, social interactions and exhibit difficult behaviors. Currently, there are 46.8 million people living with dementia worldwide, with 9.5 million of them in China and the number expected to double every 20 years. Dementia causes a high level of caregiver burden in the family and is associated with high costs, socially and economically. Timely diagnosis and post-diagnosis support for people with dementia and their caregivers are effective strategies for managing dementia, reducing caregiver burden and preventing dementia associated complications in home care settings. The aims of this 2-phase study was to (1) develop, implement and evaluate feasible and effective methods identified by stakeholders to improve timely diagnosis of dementia in primary care settings in China and (2) to evaluate the effectiveness of a nurse-led caregiver support intervention in the primary care setting.

Informed by Bronfenbrenne’s Social Ecosystem Theory, the study conducted a mixed methods research design. Stage 1 was a sequenced action research study which utilized the qualitative and quantitative methods, and phase two was a quasi-randomized controlled trial (RCT). Analyses revealed three main findings. First, factors affecting timely diagnosis of dementia were derived from knowledge about dementia, the misunderstandings of dementia and stigma associated with dementia in the community. Second, cognitive screening methods and pathways for achieving timely diagnosis tested in the primary care setting in the study demonstrated feasibility and could be transferred to settings with similar social and cultural context. Third, a nurse-led caregiver support intervention tested in the study demonstrated an improved sense of competency and quality of life for caregiver and reduced caregiver distress.

The study concludes that education for the public to raise the awareness of dementia and to develop knowledge about dementia is much needed. In addition, dementia education and training programs for health professionals in primary care settings need to be developed to prepare this group of health workforce to develop, embed and sustain dementia diagnosis and post-diagnosis support services in the primary care.

Keywords: dementia, diagnosis, support, community

Subject: Health Sciences thesis

Thesis type: Doctor of Philosophy
Completed: 2019
School: College of Nursing and Health Sciences
Supervisor: Lily Dongxia Xiao