DECOVEXP

The care of people with Alzheimer disease or other dementias (ADOD) has been undermined by the COVID-19 crisis, revealing shortcomings in clinical management, creating situations of psychological stress, and renewing ethical questions about care procedures, as well as social and societal issues related to the epidemic. Certain groups have been more affected than others: vulnerable people; health professionals; informal and professional caregivers. There are major limitations in describing experiences of care among people with ADOD, as the description of care is most often limited to a patient perspective and to quantitative indicators of clinical performance. The approaches used to describe the patient experience of care are limited either to a specific disciplinary approach (e.g., cognitive disorders, sociology or medicine) or to the consideration of a limited number of care actors (e.g., the dyadic doctor-patient relationship). A new holistic concept is needed to better describe the experiences of people with ADOD, their caregivers, and healthcare professionals. The DECOVEXP multidisciplinary, transnational expert WG has three objectives: (1) to lead an interdisciplinary reflection on a new multi-disciplinary holistic concept of experience of care able to explore and describe the experience of the triad of actors involved in ADOD care during the pandemic; (2) to propose a new methodological framework for care implementation and research; (3) to develop a dissemination toolkit for the concept and methodological framework, including a new training approach. Addressing these three objectives will provide a new framework for improving the understanding of experiences in care of people with ADOD, their caregivers, and health care professionals. This framework will be able to improve care for people with ADOD, assistance for caregivers, support for health care professionals, and provide innovative and participatory research. In order to reach these three objectives within a coherent framework, our expert group combines skills from a variety of complementary disciplinary fields, including clinical experts (neuropsychologists, geriatricians, family physicians, nurses), experts in sociology, in social work, in sociology of aging, in philosophy and ethics of care, in educational sciences, in qualitative, quantitative and mixed methods, and in participatory research. These different skills will be mobilized within three workpackages (WP): • WP1: Conceptualization of a holistic concept based on the triptych patient-carer-healthcare professional adapted to describe the people with ADOD experience in care. • WP2: Combine different methods for a new methodological framework to explore the people with ADOD experience in care. • WP3: Prepare a toolkit for training and dissemination of the concept, the methods, and future results of possible research on experience of people with ADOD in care. Two international meetings, several international webinars, collective production of concepts, methods and toolkit for dissemination will be the proposed activities for these WPs. Involvement of people with ADOD and caregivers will be achieved locally due to local connexions to patients or caregivers associations, and experiences in participative research.