Challenges in Conducting Qualitative Research with Individuals with Dementia

Linda M. Beuscher · Victoria T. Grando

157 citations0/0 files storedResearch in Gerontological Nursing

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Qualitative Research Methods and Ethics Dementia and Cognitive Impairment Research Ethics in Clinical Research

Abstract

Qualitative research can capture the meaningful experiences and life values of individuals with dementia not reported in quantitative studies. This article shares a personal experience of the challenges faced and the lessons learned while conducting a qualitative study of 15 people with early-stage Alzheimer's disease. The purpose of this article is to discuss the issues concerning determination of capacity to consent to research, consent/assent, communication challenges, and trustworthiness of data when conducting a qualitative study of people with dementia. Understanding communication challenges related to dementia is important to develop effective communication strategies, such as simplifying the structure of questions, allowing ample time for the participant's response, using reminiscence, and redirecting the dialogue. This information will be valuable to researchers conducting qualitative studies and the resulting contributions to the body of knowledge about Alzheimer's disease.

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References

2013Diagnostic and Statistical Manual of Mental Disorders 1985Naturalistic inquiry 2000Diagnostic and Statistical Manual of Mental Disorders.2015Older Adults' Reasons for Using Technology while Aging in Place 2010MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR)2001Assessing the Competence of Persons With Alzheimer’s Disease in Providing Informed Consent for Participation in Research 2007Assessing the Capacity to Make Everyday Decisions: A Guide for Clinicians and an Agenda for Future Research 2001Listening to Older Women with Dementia: Relationships, voices and power

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2017Safe and Inclusive Research Practices for Qualitative Research Involving People with Dementia: A Review of Key Issues and Strategies 2018More Than Talking 2015Working alongside older people with a learning disability: informing and shaping research design 2021The VITAAL Stepping Exergame Prototype for Older Adults With Major Neurocognitive Disorder: A Usability Study 2020The impact of assistive software application to facilitate people with dementia through participatory research

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