Providing end-of-life dementia care: perspectives of care home staff.

Background: In Australia, over 50% of people living in residential aged care homes are living with dementia. Residential aged care homes are key providers of end-of-life care and staff require the knowledge and skills as well as organisational and system level support to provide quality end-of-life care. Aim: To explore the experiences and challenges of providing end-of-life care to people with dementia living in residential aged care homes from the perspective of care home staff. The information gathered was used to inform the development of a targeted training intervention. Methods: Qualitative research methods were used. Focus groups were held at 4 residential aged care homes in Melbourne, Australia. Personal care attendants (PCA), nursing staff, lifestyle coordinators and managers were invited to participate. The key topics explored included important aspects of caring for a resident with dementia at the end-of-life, supporting the family of the dying resident, and managing symptoms such as pain and shortness of breath. Results: A total of 24 staff participated in the focus groups. Emerging themes included: (i) There are two transitions: recognising the need for a palliative care approach and the transition to end-of-life care; (ii) It’s all about the resident and their comfort, (iii) The role of care home staff and team dynamics; and (iv) Staff also experience grief and loss. Challenges discussed included: recognising and managing changes in care needs, and addressing family misunderstandings. Conclusion: Residential care home staff see their role as providing comfort care and support to the resident and their family at end-of-life. The findings will be used to inform the development of a new screen-based simulation training program for staff who provide palliative and end of life care to people with dementia living in residential care homes.