Interviewing people with dementia, some suggestions
…the words of people with dementia show us how they feel about the experience of dementia, and in many cases, there is an awareness of the effects of the condition, with often a strong sense of self. (Kotai-Ewers 2000)
As part of my research I am often interviewing older people, some of whom have dementia, in Japan and the UK. I have done such interviews for several years now, and over time I have become more aware of the potiential problems that can arise in these interview situations. Depending on the stage of their dementia, interviews may feel difficult to the researcher, however we should be careful not to underestimate their ability to respond. There are moments when their memory/ies may “click” with our questions or as a result of some other stimulation, especially when it comes to music that strongly connect (and connect them) with their past and who they are.
I have found that it is important whenever I interview people with dementia, to be careful with the setting for the interview: make is as comfortable and non-threatening as possible. For example, I will always choose a familiar space for the interview, like their home or a place where they regularly go for social meetings or other everyday activities that they engage in. I also ask their partner, family or carer (anyone they feel close and secure with) to join me for the interview. When I want to discuss their musical preferences, tastes or memories, I bring with me a songbook (if appropriate) that they usually sing with, and go through the songbook, sometimes sing or hum tunes together. This way they are able to show what the music means to them through words and/or expressions, and by singing, or any other act of musicking. In addition to any verbal responses, I make a note of cognitive/emotional responses that come from their music making either during an interview or during public musical activities, the latter is done as field notes during participant observation sessions.