Family caregivers' perspectives on ethical challenges in dementia care

Abstract

In Turkey, dementia care is largely provided by family members due to limited formal services and strong cultural expectations regarding familial responsibility. This situation places caregivers under considerable burden and exposes them to complex ethical dilemmas, particularly when balancing patient autonomy and safety. Research aim This study aimed to explore the ethical challenges and dilemmas faced by family caregivers providing dementia care in Turkey. Research design A descriptive qualitative design using interpretative phenomenological analysis (IPA) was employed to explore caregivers’ lived experiences. Data were collected through semi-structured interviews (June–July 2024), audio-recorded, and transcribed verbatim. Methodological rigor was ensured using COREQ guidelines. Participants Participants comprised 12 family caregivers of individuals with dementia receiving home-based care coordinated by a state hospital in Turkey. Purposive sampling was used. Eligible participants were Turkish-speaking adults who had provided unpaid care for at least 6 months. Ethical considerations Ethical approval was obtained from the Koç University Social Sciences Ethics Committee (Approval No: 2024.022.IRB3.005). Written informed consent was obtained, confidentiality was ensured using pseudonyms, and participants could withdraw at any time without consequences. Findings Three themes emerged: dissatisfaction with formal dementia care services; caregiving shaped by cultural values, moral responsibility, and emotional burden; and ethical dilemmas related to dignity, autonomy, informed consent, daily care practices, and medical decision-making. Caregivers frequently described tensions between protecting their relatives and respecting autonomy, often in the absence of professional ethical guidance. Discussion and conclusions The findings highlight how ethical dilemmas in dementia care are not solely individual but are shaped by cultural norms and systemic limitations. The lack of accessible formal services and ethical support structures intensifies caregivers’ moral distress and decision-making burden. Culturally sensitive, ethically informed, and family-centred support systems are essential to strengthen caregivers’ decision-making and well-being.