• Sascha Bolt, van der SteenJennyJ TAssociate Professor, Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, the Netherlands, Department of Primary and Community Care, Radboud university medical center, Nijmegen, the Netherlands., ScholsJosJ M G AProfessor, Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health Medicine and Lifesciences, Maastricht University, Maastricht, the Netherlands., ZwakhalenSandraS M GProfessor, Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health Medicine and Lifesciences, Maastricht University, Maastricht, the Netherlands., and MeijersJudithJ M MAssistant Professor, Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health Medicine and Lifesciences, Maastricht University, Maastricht, the Netherlands, Zuyderland Care, Zuyderland M.
• PhD candidate, Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Faculty of Health Medicine and Lifesciences, Maastricht University, Maastricht, the Netherlands.
• Int J Palliat Nurs. 2019 Sep 2; 25 (9): 432-442.

BackgroundEnd-of-life care for older people with dementia is often sub-optimal. Understanding the experiences of the relatives involved in the care of the person with dementia may help to improve care practice.AimsTo investigate relatives' experiences with end-of-life care for people with dementia, comparing the nursing home and home setting.MethodsIn-depth interviews were conducted with 32 individuals who were bereaved of someone with dementia. Thematic analysis was performed to identify main themes from the data.FindingsExperiences translated into four themes: acknowledging human dignity; being recognised as an important caregiver; (not) talking about death and dying and making decisions together. A lack of person-centered care was mainly evident in nursing homes. Relatives took on a more prominent role in the care of the older person with dementia when the relative was cared for in a home setting and this involvement in the care of the older person was something that the relatives valued. Surrogate decision-making induced similar challenges in both settings.ConclusionIt is important that healthcare professionals inform and support relatives to help them make decision about end-of-life care and preferences. Nursing homes should learn to offer the same standard of person-centred care as a home care setting, and ensure that relatives are still involved in the care of the person with dementia.

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