Dementia and everyday experiences of care and caring across formal and informal care relationships
This research project aims to explore the complex dynamics of care relationships involving people with dementia. It acknowledges the significant impact of dementia not only on those diagnosed but also on their caregivers, emphasising the importance of understanding these relationships within their broader social and policy contexts. Guided by the ‘ethics of care’ framework, the project examines the everyday experiences of care and caring, focusing on both the emotional and practical aspects of these interactions.
The research compares the care environments in Lower Saxony, Germany, and Scotland. In Scotland, informal family care is predominant, supported by limited formal care, whereas in Germany, the use of live-in migrant carers is increasingly common.
This project investigates how these different care models affect the relationships and experiences of people with dementia and their caregivers. The methodology includes secondary data analysis of qualitative data from three sources: UK dementia diaries, the CouPLeD project in Scotland, and the MoDeCare project in Germany.
The project’s goals are to understand how care is conceptualised and experienced in everyday life, how formal and informal care relationships are navigated, and the differences between care practices in Germany and Scotland. By exploring these dimensions, the project seeks to provide insights that can inform better care practices and policies, ultimately aiming to improve the well-being of people with dementia and their caregivers.
Project Owners
Paula Jacobs
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Paula Jacobs is a Teaching Fellow at the University of Edinburgh, School of Health in Social Sciences. She worked in social care for nine years before starting her academic career. Her research is interested in care-relationships, how care is practiced and experienced, and how wider processes shape experiences and decision-making. Paula is passionate about inclusive and accessible research and the ethics of involving people who are often deemed vulnerable or to lack capacity.
Anna-Eva Nebowsky
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Anna-Eva Nebowsky currently works for the Division of Ethics in Medicine in Oldenburg, where she conducts a comparative study between Israel and Germany on the moral conflicts in live-in care. Before, she was employed at the Institute for Advanced Humanities in Essen, Germany, where she conducted an ethnographic study on the communication of couples with dementia.