Previous research shows that the majority of people have a preference for disclosure of an Alzheimer’s disease (AD) diagnosis but information about how preferences may have changed over time is lacking. In this study published in the journal Aging & Mental Health, researchers at the Queensland University of Technology (Brisbane, Australia) sought to analyse current AD disclosure preferences and their evolution in the past 20 years. The present study included a sample of 229 educated participants aged between 18 and 77, including 66.7% of them aged 18 to 25 and 57.6% with at least 12 years of education. Demographic characteristics, dementia exposure and knowledge were measured. Using the "reasons for wanting to know" questionnaire, the researchers also collected information about the reasons for and against disclosure of a dementia diagnosis for oneself and for one’s relative. The study found that most people were in favour of disclosure for themselves and for their relatives, with older participants (aged over 35) being significantly more likely to want to know about their own diagnosis than younger people. The most common reasons cited for wanting to know about one’s own AD diagnosis included planning, and the right to know, accounting for the preferences of more than 90% of participants in both groups.
Regarding disclosure of diagnosis to a relative, more than 90% of participants cited their reasons as being the desire to support their relative, and the right to know. The most common reason against disclosure for oneself was concern about depression and agitation and the desire to live "normally". For relatives, these included fear of upsetting them, potential suicide, and desire to protect the relative. Most participants expressed reasons for and against disclosure, showing that people can hold a range of different and sometimes contradictory preferences. When asked whether anything would alter their position on the subject, participants' responses were varied, with 10 different reasons being given overall. These results indicate that preferences for disclosure differ across individuals, and may be more influenced by age and values than knowledge or exposure to dementia. This research also shows that the most common reason for favouring AD disclosure is the right to know indicating that autonomy is highly valued. https://www.tandfonline.com/doi/full/10.1080/13607863.2022.2107174
