How can we get access to the experiences of people with dementia? Suggestions and reflections

This paper suggests and discusses a methodological approach that aims to facilitate the inclusion of people with dementia in research where the ambition is to better understand their experiences. People with dementia have commonly not been included as informants in research as their cognitive deficits have been regarded as a hindrance. Moreover, in the qualitative research tradition, most inquiries rely on data obtained from interviews, thereby requiring communication and verbal skills, which are skills that are affected early in the cause of dementia. Consequently, the considerably under-researched area of how dementia is experienced and managed from the perspective of those afflicted has long been put aside. This paper suggests that a combination of qualitative observations and adapted interviews may make it possible for people with dementia to participate as research informants. Issues concerned with creating a relationship with informants with dementia and helping them to elicit their experiences are elaborated and discussed. Some suggestions are made concerning how the context can be used for this intent, and how the observations and interviews can be adapted to the informants with dementia.