Subjecthood matters: Autoethnography of caring for father with dementia under rural constraints

Abstract

The article presents a deeply personal and scientifically grounded analysis of caring for an aging parent with progressive dementia in rural Russia. Based on the experience of caring for his father in the town of Abaza (Khakassia), the author shows the complex interplay of administrative, social and cultural factors that determine the quality of palliative and long-term care in rural areas. Although Abaza has a city status, it is rather a rural settlement with a shortage of medical and social resources, close community ties, widespread subsistence farming, and weak institutional support. The author describes how these “rural constraints” both complicate caring and develop a specific care culture in which professional assistance often turns into the formal performance of duties, ignoring the patient’s subjecthood. Under the crisis caused by his father’s deteriorating condition, the author shows how a return to a person-centered approach (negotiated actions, respected individuality and emotional engagement) can restore the patient’s speech, mobility, and dignity. The author emphasizes that dementia does not eliminate subjecthood but demands to rethink care practices. The article calls for a paradigm shift: from efficiency and bureaucratic regulation toward reflexivity, ethics of care and recognition of the elder as full-fledged subjects, regardless of cognitive impairment or geographical location.