Giving Voice to Persons Living With Dementia: The Researcher’s Opportunities and Challenges

Abstract

Few qualitative studies have examined the experiences of persons living with dementia and little has been written about the opportunities and challenges for the researchers. This article challenges the assumption of dwindling personhood among persons with dementia. Methodological challenges which may be encountered by qualitative researchers are outlined and specific strategies for addressing these challenges are described including: modifying consent/assent procedures, adjusting sample size, facilitating communication, and making the most of the data.

A meta-synthesis of qualitative research on perceptions of people with long-term neurological conditions about group-based memory rehabilitation

“…Gilbert (2004) and dementia e.g. Moore and Hollett (2003), which have led to suggestions for researchers conducting interviews with such participants. These suggestions included adaptations of interview schedules and styles.…”

Preventing Loss of Independence through Exercise (PLIÉ): qualitative analysis of a clinical trial in older adults with dementia

“…One qualitative study of tai chi used focus groups of individuals with dementia (Gibb, Morris, & Gleisberg, 1997) and, therefore, was limited by recall. However, we believe that participant observation and interviews with caregivers may be more suitable methods for such investigation, are particularly suited to examine the nature of the participants' experience (Gibson, Timlin, Curran, & Wattis, 2004;Moore & Hollett, 2003), and have been used to examine implicit memory and social interactions in people with dementia. (Kontos, 2004;Sabat & Lee, 2012).…”

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

“…[159][160][161][162] Consequently, it has been argued that excluding vulnerable patients from the opportunity to take part in research on the basis of assumptions made about their experiences and preferences is discriminatory and restrictive. [163][164][165][166][167] However, we were well aware of the need to approach contacts with patients and family carers with the utmost care and sensitivity, and to be suitably responsive to patient and family carer reactions and preferences throughout the research. This respect for emotional boundaries relied on the interviewers' skills in recognising non-verbal cues in order to respond appropriately to each participant.…”