“Heartbreaking, hardest part of the job”: Acute care nurses’ work with patients with dementia who self-neglect their hygiene

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University of New Brunswick


Introduction: When nurses encounter people in institutional settings who are living with dementia and self-neglecting their hygiene, they are challenged to provide care that respects autonomy while upholding the ethical principles of beneficence and nonmaleficence. Method: The method of inquiry for this project was simulation-primed interviews. Eighteen acute care nurses were first immersed in a simulated nursing hand-off report where they heard the story of a patient who had declined offers of assistance with personal hygiene care. Participants were then asked to share how they would respond to this patient as an on-coming staff member. Findings: In response to the simulation, all participants described what they would do in an ideal world when working with the patient, as well as what they would not do. They talked about the daily work of nursing, and they shared the many creative ways that they would work with the patient to accomplish personal hygiene care in an ideal world. They also shared the many barriers they experience to providing desired care. Analysis: In describing how they would get the patient washed for the day, participants highlighted the importance of washing someone the right way. They described caring for the patient in the right way as a moral imperative that must be fulfilled to be a Good Nurse. When they encountered barriers to actualizing that care, participants worried that their status as Good Nurses was being called into question. Participants identified the primary barriers to actualizing the moral imperative in the context of dementia care as 1) neoliberal healthcare reform and 2) patients who had been incontinent and continued to decline their assistance with care. In the context of neoliberal healthcare reform, nurses were often unable to re-establish themselves as Good Nurses and experienced moral injury. In the context of self-neglect and incontinence, though, participants were often able to re-establish themselves as Good Nurses through three discursive strategies: 1) describing dementia as a pathological condition inherent to who the person is, 2) nominalizing care, rendering it a deliverable, and 3) describing fecal incontinence as an emergency.