Caring for people living with dementia in their own homes: A qualitative study exploring the role and experiences of registered nurses within a district nursing service in the UK.

Abstract

In the UK, district nursing services (DNS) deliver care to people intheir own homes and have regular contact with people with dementia. Research conducted with nurses working in similar roles outside the UK suggests their contribution to high quality dementia care is limited by compassion fatigue, lack of dementia training and low levels of confidence. However, there is a paucity of research exploring the role and learning and support needs of nurses within DNS. The aim was to gain insight into the role and experiences of nurses caring for people living with dementia at home. The study was informed by a descriptive phenomenological approach. Semi-structured interviews were conducted with a purposive sample of ten nurses working in DNS. Data were analysed thematically. Five main themes were identified: 'Home as a care setting' reflected how delivering home-based care shaped participants experiences of caring for people with dementia; 'Taking it in their stride' revealed how participants adapted and responded to the complexity of care needs for people with dementia; 'Complexity and unpredictability' related to the unpredictable nature of people with dementia's care needs and the impact this had on participants' workloads; 'Expertise and support within the wider team' detailed which networks nurses used for advice and support to manage the complex needs of people living with dementia at home; 'Specialist support' identified the need for structural changes and resources to enable the nurses to deliver the care needed. This study enables better understanding of the role of DNS in supporting people with dementia to live at home. This is important for defining how dementia care can become effectively integrated into primary care. Recommendations include improved models of care, which factor in specialist nurses, additional time for home visits and greater emphasis on education and training. Improved models of working that factor in additional time and staffing such as specialist nurses in dementia and palliative care would allow DNS to meet the needs of people with dementia more effectively.