Supporting families of patients with dementia at end-of-life in hospital

Abstract

IntroductionThere are barriers to implementing person-and family-centred end-of-life care for people with dementia in hospitals. Nursing care for people with dementia is enhanced through family involvement. However, families report unmet needs during admissions contributing to distress and dissatisfaction. Furthermore, little is known about families’ needs during end-of-life care for people with dementia in hospital. AimThis study examined perceptions of interpersonal care during end-of-life for patients with dementia. MethodsThis research used a qualitative approach framed through a social constructionist and complex systems theoretical frameworks. Hospital clinicians (n = 20) and bereaved family members (n = 12) of deceased patients with dementia participated in semi-structured interviews focussing on recent end-of-life care experiences. FindingsAn overarching theme of maintaining connections highlights the need to support patient and family bonds at end-of-life. Although clinicians often presumed families had experienced the social loss of a relative due to dementia, most families described continued bonds. Despite clinicians’ insights into caregiver grief, several families reported unmet bereavement support needs. Clinicians and families sought to personalise end-of-life through affirming signs of patients’ presence, working collaboratively to achieve comfort, personalising basic care interventions and offering gestures of hospitality. ConclusionEnd-of-life care for people with dementia and their families is improved when clinicians personalise patient care interventions using creative and simple strategies. Families feel comforted through humanistic care that acknowledges their unique relationship with the patient. However, it is vital to integrate grief and loss psychoeducation during end-of-life care to address families unmet bereavement needs following patient death.