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. 2025 Sep 2:14713012251375380.
doi: 10.1177/14713012251375380. Online ahead of print.

Exploring Ethical Dilemmas and Concerns in Caring for Persons With Dementia: Insights From Formal Caregivers in Albania

Elona Gaxhja  1 , Ilma Toci  1 , Dorina Saja  2 , Eliona Sula  1 , Mitilda Gugu  1 , Daniel Sperling  3
Affiliations

Exploring Ethical Dilemmas and Concerns in Caring for Persons With Dementia: Insights From Formal Caregivers in Albania

Elona Gaxhja et al. Dementia (London). .

Abstract

IntroductionDementia is an escalating global concern driven by aging populations, significantly impacting Low-Middle-income countries like Albania. Formal caregivers face a unique set of ethical dilemmas and concerns when caring for individuals with dementia and their families. The lack of ethical guidelines and policies further complicates decision-making in these contexts. This is part of a larger EDEM project.AimThis study aims to explore the extent to which ethical dilemmas and concerns in caring for people with dementia are observed and experienced by formal caregivers in Albania.MethodsData were collected through face-to-face semi-structured discussions with three homogeneous focus groups of formal caregivers from diverse educational backgrounds, and analyzed using thematic analysis within the conceptual framework of Interpretative Phenomenological Analysis (IPA).ResultsA total of 23 participants (8 nurses, 7 social workers and 8 doctors) were included. Three main themes emerged which were: (1) Ethical Tensions in Caring for an individual with dementia and Family involvement; (2) The Multifaceted Burden of Dementia Care on Families; and (3) Quality of Care and Resource Allocation; Training and education of healthcare professionals. In patriarchal societies like Albania, caregivers' personal and cultural beliefs may conflict with their professional duties or the preferences of individuals with dementia and their families.ConclusionsFormal caregivers provide insights into their experiences with ethical dilemmas, concerns, and decision-making processes when caring for individuals with dementia. The findings underscore the critical necessity for developing and implementing clear policies, guidelines, community awareness initiatives, and comprehensive training programs for multidisciplinary teams, aimed at promoting optimal care standards.

Keywords: Albania; dementia care; ethics; formal caregivers.

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