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

Introduction

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.

Keywords

Alzheimer, Dementia, DIPEx, qualitative research

Funding

Alzheimer Schweiz

Project duration

2017 - 2019

Approach/methodology

Qualitative health research

Aims

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. 

Expected outcomes

As a primary endpoint, this study aims to contribute to qualitative social science as well to clinical practice. Research on patients’ illness experiences can serve the purpose of: 1.    informing policy, improving health services, and being a repository for future research;2.    being an informative source to patients and healthcare providers by publicly          disseminating knowledge of illnesses through evidence-based reports on health and illness (by means of an online platform), and; 3.    facilitating comparative research between countries.Second, this project will produce a unique website featuring video and audio clips from in-depth interviews, collected by the Biomedical Ethics and History of Medicine research group, with people about their experiences of health and illness. The website is not 'just' a health information web page, nor a patients' chat-rooms, or one of the many health websites that now have an area for patients' experiences: instead each project is a rigorous qualitative research study on the experiences of people facing the condition or health problem. Our project may therefore be taken as a real indication of what it is like to experience each of the health and illness conditions we cover. Each condition-specific section of the website includes a systematic collection and analysis of interviews with people about their experiences, evidence of the effects of treatments, information about support groups and other resource materials, and links to answers to questions that participants raise. Additionally, the online platform will:1)    feature 25 topic summaries for each condition-specific study illustrated with 250-300 video and audio clips from the research interviews;2)    provide accurate and relevant information about living with the condition through carefully selected interview clips;3)    help people decide what to ask their doctors about their health care;4)    provide support and information to help people make health decisions;5)    be an educational resource on patients experiences for medical students, doctors in training, nurses, health visitors and other health professionals;6)    promote a more balanced encounter between patients and health professionals when dealing with the condition;7)    provide a patient-centered perspective to researchers, managers and those who commission health services; and 8)    provide information and web links for local and national voluntary organizations, resources and support groups.