Patients’ experiences of living with the risk of Alzheimer’s disease – a multicentre qualitative study

Abstract

Aims and objectives To explore the experiences of receiving and living with a diagnosis of prodromal Alzheimer’s disease. Background Alzheimer’s disease is a progressive dementia disorder, with pathology potentially developing years before clinical symptoms. Evidence concerning patients’ perspectives on living with a prodromal Alzheimer’s disease diagnosis remains scarce. Design and methods A qualitative, descriptive design was employed. Semi-structured interviews were conducted with 16 participants diagnosed with prodromal Alzheimer’s disease in memory clinics in Denmark, Norway and Iceland. The data were analysed using thematic analysis. Findings Four main themes emerged: 1) what led to the assessment, 2) receiving the diagnosis of prodromal Alzheimer’s disease, 3) everyday life after the diagnosis and 4) planning for the future. The participants experienced diverse trajectories to diagnosis, with some being alerted by others to symptoms and some recognising the symptoms themselves. The diagnostic process was often perceived as intimidating, and person-centred care was valued. After the diagnosis, the participants focused on managing daily life, experienced changes in relationships and harboured mixed emotions about the future. Conclusion Receiving a prodromal Alzheimer’s disease diagnosis impacts patients’ perceptions of their abilities, relationships and future. There is a need for interventions targeting both patients and their families to maintain a close bond between them and support hope. Clear communication about the distinction between prodromal Alzheimer’s disease and Alzheimer’s dementia is crucial. Patient or public contribution No Patient or Public Contribution.