Doing research with People with Dementia (PwD) can be challenging given that disease symptoms of anxiety, forgetfulness, and fluctuating mental capacity can make recruitment and data collection difficult. Once COVID-19 made face-to-face data collection impractical, using internet-based methods became an alternative option to continue with research. However, data collection with PwD over the internet requires strategies to observe, support, and enable them to engage with research, especially with qualitative approaches. Nine articles were selected via a decade rapid scoping review (undertaken March-June 2020) to identify qualitative online methods used with PwD and associated challenges. Methods used were online interviews, clinical assessment/telemedicine, and textual analysis from blogs, forum posts, and Tweets created by PwD. Practical challenges identified: the researchers’ limited ability to manage the physical and social environment. Technical challenges identified: the need for a high degree of technical support for participants prior and during data collection. Ethical challenges identified, negotiating confidentiality, obtaining valid informed consent, and ensuring data security. Implicit findings found related to how researchers perceived and treated online data retrieved from the internet and how the challenges mentioned in the included articles did not link to dementia symptoms.


scoping review, dementia, online research, internet research, qualitative research, technology, inclusive research

Author Bio(s)

Tharin Phenwan is a Ph.D. student at the School of Health Sciences, University of Dundee and assistant professor at Walailak University School of Medicine, Thailand. His research interests are Dementia, Advance Care Planning, Palliative Care, Quality of Life and Qualitative Research. Correspondence concerning this article should be addressed to Tharin Phenwan, School of Health Sciences, University of Dundee, United Kingdom. Email: t.phenwan@dundee.ac.uk

Judith Sixsmith is currently professor of Health-Related Research in the School of Health Sciences at the University of Dundee. Her research focuses on ways of improving the health and wellbeing of older people marginalised within social systems as well as understanding and developing age-friendly cities and communities for healthy ageing. Judith’s work on palliative and end of life care has explored the cultural, religious, and spiritual needs of ethnic minorities and evaluating the intersections of service provision and home environments.

Linda McSwiggan is a Reader in the School of Health Sciences at the University of Dundee Her career has focussed on community nursing through clinical practice (having held posts in district nursing, health visiting, midwifery, and social work), education and research. In terms of both teaching and research, she has wide experience of collaboration with service users and care givers, and of working across disciplinary boundaries.

Deans Buchanan is a Consultant in Palliative Care in Tayside. He completed his medical doctorate in 2010 on the “unmet supportive care needs of lung cancer patients.” He is currently Lead Clinician for the Tayside Palliative Care Service, Co-director of the Public Health (Palliative Care Research) University of Dundee Masters, an Honorary Senior Clinical Lecturer for the University of Dundee, and a Council member of the Scottish Partnership for Palliative Care.

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