Good practice for conducting qualitative research with older people with early stage dementia

Main Article Content

Nittiya Noysipoom

Abstract

This article aims to demonstrate good practice for conducting research with older people with early-stage dementia who have real-life experience of dementia. They still able to communicate their own experiences, opinions, feelings, and needs to others. They are still able to remember or recall relevant information to the study and can decide to participate in the study. This article draws on information from a review of the literature related to studies involving older people with dementia and from the author’s experiences conducting research studies with older people with early dementia.


Older people with early-stage dementia are considered vulnerable. The researcher must consider the sensitivity of the impacts of participating in the research study, including physical, mental, social, and spiritual aspects. However, this group of research subjects should be treated in the same way as other subjects. The aspects to consider include selection of participants to participate in a qualitative research study, providing study information and obtaining consent to participate in research, ethical risks in research and risk management, research methods, interview techniques, and considerations for conducting the research. All this to understand the perspectives, real-life experiences of living with early stage dementia, problems and needs of the older people with dementia who are the informants.

Downloads

Download data is not yet available.

Article Details

How to Cite
Noysipoom, N. (2023). Good practice for conducting qualitative research with older people with early stage dementia. BCNNON Health Science Research Journal, 17(3), 166–178. retrieved from https://he01.tci-thaijo.org/index.php/JHR/article/view/263368
Section
Academic Article

References

McKeown J. Researching with people with Dementia. In: Liamputtong P, editor. Handbook of research methods in health social sciences. East Gateway: Springer; 2019.

Hughes T, Castro RM. A processural consent methodology with people diagnosed with dementia. Qual Ageing Older Adults. 2015;16(4):222–34.

Kitwood T. Dementia reconsidered: the person comes first. New York: Open University Press;1997.

Higgins P. Involving people with dementia in research. Nursing times. 2013;109(28):20-3.

Scottish Dementia Working Group, Research Sub-Group, United Kingdom. Core principles for involving people with dementia in research: Innovative practice. Dementia. 2014;13(5):680-5.

Gove D, Diaz-Ponce A, Georges J, Moniz-Cook E, Mountain G, et al. Alzheimer Europe’s position on involving people with dementia in research through PPI (patient and public involvement). Aging Ment Health. 2018;22(6):723-9.

Ljubenkov PA, Geschwind MD . Dementia. Semin Neurol. 2016;36(4):397-404.

Coope B, Richards FA. ABC of dementia. Chichester, West Sussex: Wiley- Blackwell; 2014

Bolt SR, van der Steen JT, Khemai C, Schols JMGA, Zwakhalen SMG, Meijers JMM. The perspectives of people with dementia on their future, end of life and on being cared for by others: A qualitative study. J Clin Nurs 2022;31(13-14):1738–52.

Risco E, Cabrera E, Farré M, Alvira C, Miguel S, Zabalegui A. Perspectives about health care provision in dementia care in Spain: A qualitative study using focus-group methodology. Am J Alzheimers Dis Other Demen. 2016;31(3),223-30.

Pratt R. ‘Nobody’s ever asked how I felt’. In: Wilkinson H, editor. The Perspectives of people with dementia: Research method and motivation. London: Jessica Kingsley;2002.

Bartlett H, Martin W. Ethical issues in dementia care research. In: Wilkinson H, editor. The perspectives of people with dementia: Research methods and motivations. London, UK: Jessica Kingsley;2002.

Hegde S, Ellajosyul R. Capacity issues and decision-making in dementia Ann Indian Acad Neurol. 2016;19(1):S34-S39.

Sutcliffe CL, Roe B, Jasper R, Jolley D, Challis DJ. People with dementia and carers’ experiences of dementia care and services: Outcomes of a focus group study. Dementia. 2015;14(6):769-87.

Svanstrom R, Sundler AJ. Gradually losing one’s foothold: A fragmented existence when living alone with dementia. Dementia. 2015;14(2):145-63.

Portacolone E, Johnson JK, Covinsky KE, Halpern J, Rubinstein RL. The effects and meanings of receiving a diagnosis of mild cognitive impairment or alzheimer’s disease when one lives alone. J Alzheimers Dis. 2018;61(4):1517-29.

Creswell JW. Research design: Qualitative, Quantitative, and Mixed methods approaches fourth edition. Thousand Oaks: Sage; 2014.

Spradley JP. The ethnographic interview. Belmont: Warsworth Cengage Learning; 1979.

Fetterman DM. Ethnography: Step-by-step fourth edition. Los Angeles, Sage; 2019.

Murphy K, Jordan F, Hunter A, Cooney A, Casey D. Articulating the strategies for maximising the inclusion of people with dementia in qualitative research studies. Dementia. 2015;14(6):800-24.

Noysipoom N. The needs of older persons with early stage dementia from their perspectives: An ethnographic study in northeast Thailand. [Dissertation]. United Kingdom: The University of Hull; 2021.

Górska S, Forsyth K, Irvine L, Maciver D, Prior S, Whitehead J, et al. Service-related

needs of older people with dementia: perspectives of service users and their unpaid carers. Int Psychogeriatr. 2013; 25(7):1107-14.

Johansson MM, Marcusson J, Wressle E. Cognitive impairment and its consequences in everyday life: experiences of people with mild cognitive impairment or mild dementia and their relatives. Int Psychogeriatr. 2015; 27(6):949-58.

Digby R, Lee S, Williams A. Interviewing people with dementia in hospital: recommendations for researchers. J Clin Nurs. 2016;25(7–8):1156–65.

Cridland EK, Phillipson L, Brennan-Horley C, Swaffer K. Reflections and recommendations for conducting in-depth interviews with people with dementia. Qual Health Res. 2016;26(13):1774-86.