At-risk offspring and dementia prevention: a discourse analysis

Background: Successful late-onset dementia prevention studies will require the cooperation of large numbers of at-risk individuals. Factors determining differences in participation in long-term trials need investigation. We aimed to inform successful recruitment to prevention trials by applying discourse analytic methods to interview data obtained from at-risk adult offspring in order to illuminate aspects that may not be captured using traditional psychometric measures or some of the more commonly used qualitative methods.

Methods: Semi-structured interviews focusing on views of personal risk in adult offspring of community-dwelling people with early stage late onset dementia were transcribed in full and analysed using discourse analytic methods. As participants had not been asked their views on dementia prevention in the interview a 6 item lickert-type telephone questionnaire on dementia risk and prevention was developed and completed by the same offspring and other siblings (n21).

Results: Offspring had not previously been asked about risk and many had never discussed it with family members. Most participants initially denied they had any concerns around their own risk. However, using the space and encouragement of the interview situation participants gained confidence to voice their concerns. Discourse analysis illuminated how participants formulate their ideas about risk and often do construct their own (erroneous) risk estimations. The questionnaire data identified that 20/21 people would want to participate in dementia prevention studies. Only 2/21 people would not want to know their risk estimate (1 would participate without knowing their risk).

Conclusions: We need to learn more about how people formulate risk conversationally and examine the ways their versions of reality influence behaviours in terms of participation in dementia prevention and risk reduction interventions. This study shows that people who are at higher risk of developing dementia want to be told their risk in terms they understand and they want to be invited to participate in long-term studies.