The right to mourn in dementia: To tell or not to tell when someone dies in dementia day care

ABSTRACT

People with dementia (PwD) attending dementia day care often experience the death of others. Little research exists regarding whether PwD should be informed of the death, and if so, how? In this qualitative research, the authors explored, through semistructured interviews, the beliefs and practices of 52 staff members of adult day centers for PwD about these issues. Themes that emerged are that many staff members feel their clients have emotional capacity to mourn, despite their cognitive impairments. There are many different ways to tell PwD about the death of others. Each case should be judged individually. Eighty percent of staff feels sad when a group member dies and 92% desires more training on how to enable their clients to grieve. Research is needed on mourning and PwD, staff training, and ways to help staff with the burden of their own grieving. These methods may improve quality of care and decrease staff burnout.

Acknowledgments

We would like to thank the MELABEV staff who participated in the research, as well as our research assistant Leah Gottesman, and the research students: Jonah Doustar, Jonah Warshawsky, and Omid Keypour for their assistance.