“I think they killed him”: Long‐term trauma associated with perceived cause of death in bereaved dementia caregivers whose loved ones were in a nursing home at time of death

Abstract

AbstractBackgroundOne in three Medicare beneficiaries dies with dementia. COVID‐19 has disproportionately increased death rates among: persons living with dementia (PLWD), those in nursing homes, and members racially/ethnically minoritized groups. Simultaneously, COVID‐19 led to a mass exodus of nursing home staff, creating a perfect storm for abuse and neglect, especially of those most often historically and systematically disadvantaged. Reports of abuse and neglect in nursing homes, especially among PLWD are not new. But, the primary focus has been residents being abused or neglected. In the present paper we present the implications of abuse and neglect for the family and friends who provide care for PLWD in nursing homes.MethodTogether with community partners we explored experiences of dementia‐related bereavement with a 15‐member community advisory board over two years. Our authorship team includes experts in long‐term care, healthcare system administrators, nurses who have worked within healthcare systems, and those with lived experience. Lived experience perspectives come from caregivers who cared for parents and grandparents with dementia, identify with different racial/ethnic groups, are of different ages, and have had between 2 and 12 years since the death of the PLWD they cared for.ResultAs one community member stated, “there’s all kinds of ways that a facility could potentially kill someone, whether it be through like a willful act or just neglect.” We present the experiences of community partners who attribute the deaths of PLWD they cared for to such abuse and neglect and explore the ways that abuse and neglect manifested, potential precipitating events, and how those deaths continue to affect family members years or even decades after a PLWD’s death.ConclusionWe explore and share these experiences to amplify the voices of these bereaved dementia caregivers and raise a call for the research and clinical communities to seek ways to aid former caregivers and nursing home staff. Community partners also made clear that interactions between each person with dementia and nursing home staff were exceedingly challenging and that those staff deserve additional support to help them prepare for and cope with those events.