Qualitative and quantitative dementia research with participatory aspects\r
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QUEST, which stands for 'Qualitative and quantitative dementia research with participatory aspects', is the title of a project run by the German Center for Neurodegenerative Diseases (DZNE) and the University Medical Center in Ho Chi Minh City, Viet Nam. The project uses a two-pronged approach to convey methodological skills for qualitative dementia research, enables the participants in Viet Nam to gather practical experience as part of an accompanying study and closes gaps in the country in the care of patients with dementia.\r
The two partners have cooperated since 2018, carrying out activities such as supporting a hospital with building an out-patient memory unit to ensure basic care for patients with dementia and their carers. \r
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Background information\r
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Informal caregiving for patients with dementia places a huge burden on the family members serving as carers. However, to date no standardised support is available in Viet Nam for relatives providing care. This gap in care is also tantamount to a research gap, because little is known about the needs of those providing family caregiving and people with dementia, and no needs-based support services are in place. This is especially true for marginalised population groups. \r
To generate more knowledge in this area, qualitative research methods are needed that have to be learned. Involving specialists, patients and family members in the research context (patient and public involvement, PPI) helps identify needs. However, qualitative research methods and PPI approaches are virtually unknown in dementia and caregiving research in Viet Nam. \r
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Activities\r
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The activities are undertaken in two parallel areas: a theory part with seminars and workshops and a practical part, which consists mainly of the accompanying research study.\r
•\tPlanning and conducting seminar series and workshops (online and in-person events) on the foundations of dementia, the significance of family care and the risks for the family members providing care, participatory approaches for needs-oriented scientific activities, interview techniques, and on qualitative data analysis, in particular in the context of research on dementia and family-caregiving.\r
•\tDeveloping teaching material and conducting a study \r
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Results\r
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Staff of the University Medical Center are able to independently plan and conduct research projects with a qualitative or mixed-method design in accordance with generally recognised standards. The qualitative research approaches taught can be used at regional or national level for further studies in future. Furthermore, decision-makers can leverage the results of the study as the foundation for planning and designing a health and support system for people with dementia and the family members who care for them.\r