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Please use this identifier to cite or link to this item:
http://hdl.handle.net/10174/40947
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| Title: | Ethics in Dementia Care: Findings from Portuguese family carers |
| Authors: | Morais, Ana
Serra, Isaura
Cruz, Dulce
Sperling, Daniel |
| Keywords: | Tomada de decisão
Dilemas éticos
Cuidadores informais
investigação qualitativa |
| Issue Date: | 2-Dec-2025 |
| Publisher: | Portuguese Journal of Public Health |
| 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, decisionmaking 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. |
| URI: | http://hdl.handle.net/10174/40947 |
| Type: | article |
| Appears in Collections: | CHRC - Artigos em Livros de Actas/Proceedings
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