Once the participants agreed to be involved, we arranged interviews at home. Cathy was accompanied by Tula, Pippa or Amelia; we brought cake, drank tea and listened to the experiences of people with dementia and their families.
The participants knew that the project was about ‘living with dementia’, and our opening questions were very broad, such as ‘tell us about yourself/yourselves’. We wanted to know how much in the foreground the dementia featured, and how it was discussed.
The people who were interviewed did talk about dementia, but often late in the conversation with reference to how they reacted to their diagnosis, for example. So the impact of dementia was seen as a biographical moment, a time where something changed, but in the context of a rich and valued life that they had enjoyed.
The majority of time in the interviews were spent recalling happy times, when the family were together for family Christmases, and adventures. Interviewees almost completely focused on the things they
felt were important in life and, even when asked completely open
questions about what else they would like to talk about, they emphasised
all that was positive, funny, or what they had learned from the challenges.
It was a very enjoyable time. We heard about family holidays, travels and adventures, living overseas, losing loved ones, aspirations and dreams that had eventuated and others that had not.
The interviews were video recorded and portrait photographs were taken, and we talked for about two hours. All of the participants reflected on this as a very relaxed and happy time, which they cherished.