Guidelines for nursing homes delivering end-of-life care to residents with dementia across the island of Ireland

Purpose - This study aims to contribute to improving quality of life for people with end stage dementia living in residential care settings by investigating the experiences of elderly spouses whose relatives died with end-stage dementia in nursing homes in both Northern Ireland (NI) and the Republic of Ireland (RoI). A second aim is to develop guidelines for nursing home staff for the delivery of quality care to residents with end stage dementia in residential institutions. Design/methodology/approach - This study had two phases. Phase one involved conducting in-depth qualitative interviews with spouse caregivers whose relatives had died from dementia in long stay care environments. Phase two entailed incorporating the information gathered through the in-depth interviews into draft guidelines and disseminating these to a multi-disciplinary group of health service professionals for their critical appraisal and ratification. Findings - Findings showed that the (EoL) care delivered was deemed by most elderly spouses to be of high quality, with person centred, individual, kind, professional care highly valued. Areas of dissatisfaction noted included poor communication, lack of involvement in key decision making, and poor symptoms control. Originality/value - Based on the study's findings, guidelines for the delivery of quality care in long stay residential institutions were developed in consultation with eight health service professionals. The authors hope these guidelines will contribute to improvements in the care of people with dementia at end of life and will form the basis for the future development of policy, practices and procedures.