Understanding the experience of Alzheimer’s disease diagnosis disclosure : the patient-carer dyads’ and geriatricians’ perspective

Abstract

The experience of Alzheimer’s disease (AD) diagnosis disclosure is a complex phenomenon, not only for the patient and their carers receiving the diagnosis, but also for the professionals who break the bad news. The primary aim of this exploratory study was to elucidate the experience of AD diagnosis disclosure from the patient-carer dyads’ and geriatricians’ perspective, and understand how the experience of the patient-carer dyads’ parallels with that of the geriatricians’. Interpretative phenomenological analysis (IPA) was used to explore this phenomenon from multiple perspectives. Eight participants (group 1: three patient-carer dyads; group 2: five geriatricians) were recruited through purposive sampling, and semi-structured interviews were carried out. Data was analysed using IPA. The findings from the patient-carer dyads’ shed light on their pre-diagnostic experience, their experience of the diagnosis disclosure, and the implications of living with AD. The findings also highlighted the different mechanisms employed by the dyads to cope with the diagnosis. The geriatricians experience in breaking the bad news was described as challenging, as during the process of diagnosis disclosure, various dilemmas and considerations emerged. Different factors influenced the process of disclosure. The geriatricians described multitude of emotions in breaking the bad news and recognised the importance of various coping strategies. After comparing and contrasting the interviews of group 1 and group 2, a holistic understanding of AD diagnosis disclosure for the parties involved emerged. These findings illustrated that there are similarities and differences in the experience of group 1 and group 2 participants. In conclusion, this research highlighted various recommendations for clinical practice, policymakers, future research, and education in relation to the area of AD diagnosis disclosure.