Ethics in Dementia Care: Findings from Portuguese family carers

Abstract

Objective: Dementia is an increasingly pressing global public health issue, with a substantial rise in prevalence anticipated by 2050. This study, conducted within the framework of the European initiative COST Action EDEM (Ethics in Dementia), focuses on the ethical dilemmas reported by family caregivers in Portugal. It aims to examine the ethical challenges, decision making dynamics, and cultural factors that shape the caregiving experience. Methods: This is a descriptive qualitative study following the Interpretative Phenomenological Analysis approach and guided by Kitwood Patient and Family-Centered Care theoretical framework. It is based on in-depth, semi-structured interviews with family caregivers of people with dementia in Portugal, conducted in July 2024. The data were analyzed using thematic analysis to elicit meaning and explore participants' perspectives. Results: Three major themes emerged from the data, each of which comprises several categories. The first theme, Progression of Dementia and Challenges in Care Provision, includes participants' reflections on symptoms and disease progression, the evolving responsibilities of caregivers, their emotional experiences and perceptions, as well as their expectations for the future. The second theme, What is good dementia care?, encompasses participants' understanding and definition of good dementia care and the main characteristics of a good caregiver. The third theme, Ethical Dilemmas in the context of Dementia, addresses the concept of ethical responsibility and explores the dilemmas participants encounter during care, including their challenges in ethical decision-making, the perceived need for ethical support, the role of values and principles in dementia care, and caregivers' reflections on their own care competencies. Conclusions: The findings highlight the multifaceted ethical challenges faced by family caregivers of people with dementia. These challenges are deeply rooted in personal values, emotional burden, and the complexity of care decisions. The results contribute to a deeper understanding of ethical caregiving, inform guidelines and support strategies for caregivers in Portugal.