Dementia and Covid19: experiences in care, No. JPNDWG2021-02

Project No. JPNDWG2021-02
Project title: „Dementia and Covid19: experiences in care”
Project duration: from 2023-07-01 to 2024-06-30
Project leader MRU: prof. dr. Jolanta Pivorienė
Project coordinator: University of Lille (France)
Project partners: Mykolas Romeris University (Lithuania), Institute of Sociology, University of Wroclaw (Poland), Babeș-Bolyai University of Cluj-Napoca (Romania), University of Minho (Portugal), University of Rome Tre (Italy), Pan-Canadian and International Research Group ROSA.

Summary: The care of people with Alzheimer’s disease or other dementias has been undermined by the COVID-19 crisis, which has exposed shortcomings in clinical management, created psychological tensions and renewed ethical questions about care procedures, as well as social and societal problems associated with the epidemic. Certain groups were more affected than others: vulnerable people, health professionals, informal and professional carers. There are significant limitations in describing the experience of care for people with Alzheimer’s disease or other dementias, as the description of care is often limited to the patient’s perspective and quantitative indicators of clinical performance. The methods used to describe patients’ experience of care are limited to a specific discipline (e.g. cognitive impairment, sociology or medicine) or take into account a limited number of care participants (e.g. dyadic doctor-patient relationships). A new holistic concept is needed to better describe the experience of people with Alzheimer’s disease or other dementias, their carers and health professionals.

 

Project activities:

• Conceptualisation of a holistic concept based on the patient-caregiver-healthcare professional triptych, adapted to describe the care experience of people with Alzheimer’s disease or other dementias.
• Combining different approaches to develop a new methodological framework to investigate the caregiving experience of people with Alzheimer’s disease or other dementias.
• Developing a toolkit for training and dissemination of the concept, methods and results of possible future research on care experiences of people with Alzheimer’s disease or other dementias.

 

The project is funded by the JPND Research “Neurodegenerative Disease Research” programme.