Collaboration with informal caregivers in the care of people with dementia: the experience of community nurses

Abstract

Title: Collaboration with informal caregivers in the care of people with dementia: the experience of community nurses Background People with dementia often live at home, and are in need of formal and informal care. Community nurses and informal caregivers have to work together increasingly, but it is unclear how collaboration between formal and informal caregivers is in the complex care of the growing group people with dementia. Aim To gain insight into the experiences of community nurses regarding collaboration with informal caregivers, and the perceived barriers and facilitators in this collaboration in the care of people with dementia in the Netherlands, from the perspective of the community nurse. Methods A mixed-method design. An online survey was sent to community nurses, followed with indepth interviews. Results A total of 120 community nurses filled in the survey, of which six participated in the interviews. The community nurses’ experience of collaboration with informal caregivers was positive, but variable. Facilitators of collaboration are: good communication, know each other, clear taskdistribution, needing each other, contact, sharing knowledge, trust, sympathy, and evaluation. Barriers are: conflicting interests, and reduced participation in care by caregivers. Conclusion & recommendations This study explored collaboration is present between community nurses and informal caregivers of people with dementia, and nurses experience this collaboration as mostly positive. Several facilitators and barriers of collaboration were identified. Community nurses have to meet various competencies to succeed collaboration with informal caregivers. Universities and home care organisations may play an important role in educating (student)nurses in this. This study did not investigate the perspective of the informal caregivers of people with dementia. Further (observational) research is needed to gain more insight into collaboration between community nurses and informal caregivers, from the perspective of informal caregivers, in order to explore how this collaboration can best be optimized.