Exploring the Experience of Living with Dementia: Gaps in Qualitative Nursing Research

Résumé

The focus of this paper is the importance of including persons living with dementia (PLWD) in qualitative research.  Both the barriers and ethical considerations that researchers face in this context are discussed. By highlighting the value of personhood, selected research methods and dementia research design are explored to advocate for and support the inclusion of PLWD in research. When ethical obstacles cause researchers to overlook vulnerable groups, such as PLWD, they are deprived of the autonomy and inclusive consideration they deserve. While existing literature has captured the beneficial and therapeutic effects of including PLWD in research, there is a marked absence in documenting people with dementia as a source of insight. Inclusive models for research are more ethically appropriate and offer a more functionally congruent framework for the research process. While methodological and ethical obstacles endure, considerations for adapting both methods and methodologies more suitable to dementia research should be considered. Qualitative nursing research of PLWD remains an undeservedly neglected source of insight into the experience of dementia and subsequent research that will influence and shape dementia care and policy.