Patients and Family Caregivers Illness Experience of Alzheimer’s: A Qualitative Study and Online Platform for Disseminating Knowledge on Alzheimer to the Public

Short Description

Understanding how patients and family caregivers are impacted by Alzheimers disease (AD), and how they perceive care management models can provide a basis for developing more appropriate clinical interventions. Therefore, the purpose of this project is to build an archive of individuals’ experience of living with Alzheimer’s or caring for a loved one who has AD. To do this, it is necessary to ascertain the views of the various stakeholders in contact with AD. This study will explore, in-depth, the perspective of patients and family caregivers regarding AD; the barriers and challenges in managing caregiving tasks, their views on the support provided to family caregivers, and depressive symptoms of caregivers. This Swiss Database of Individual Patients' Experience of illness (DIPEx) will provide a methodologically rigorous collection of interviews about patients’ and family caregivers’ real-life experiences and presents them as video- and/or audio-sequences on an online portal open to the public.


This study will combine a systematic collection and analysis of interviews with people about their experience of illness with evidence of the effects of treatments, and information about support groups and other resource materials. Such a Swiss Database of Individual Patients' Experience of illness (DIPEx) is a valuable resource in the field of patient and healthcare communication. The Swiss database provides a methodologically rigorous collection of interviews about patients’ real-life experiences with health issues and presents them as video- and/or audio-sequences on an online portal open to the public. Patients’ recollections of their lives regarding Alzheimers and dementia is collected through narrative interviews, evaluated according to an established method of qualitative social research, and prepared for dissemination to the public by means of an online patient narratives platform. 

Involved DIPEx Researchers