“I Just Feel So Unloved”: Grieving Unresponsiveness from Mothers with Dementia - Introducing Coping Profiles (RP204)

• Published in: Journal of pain and symptom management 2024-05, Vol.67 (5), p.e764-e765
• Main Authors: Wood, Kristie, Suizzo, Marie-Anne, Lum, Hillary D.
• Format: Article
• Language: English
• ISSN: 0885-3924
• DOI: 10.1016/j.jpainsymman.2024.02.427

1. Participants will be able to 1) understand relational loss with a parent with late-stage dementia, 2) understand behaviors that contribute to assessments of unresponsiveness from a mother with dementia. 2. Participants will be able to 1) understand patterns of coping and meaning-making regarding a mother with dementia's unresponsiveness, and 2) understand how to assess and respond to grief due to a parent with dementia's unresponsiveness. This study extends the limited palliative care literature regarding the unmet psychological needs of dementia family caregivers. We investigated how adult-children of mothers with dementia experience their mother's unresponsiveness (inability to tend to their core concerns). Coping profiles were identified and describe how adult-children cope with their mother's unresponsiveness. Adult-children often grieve relationship loss with their mothers with dementia. A mother with dementia's attenuated responsiveness (tending to others’ core concerns) may contribute to the relationship loss felt by their adult-children, yet how adult-children of mothers with dementia experience and make sense of their mother's unresponsiveness is unknown. To investigate and develop a preliminary conceptual model of how adult-child caregivers experienced and interpreted unresponsiveness from their mothers with dementia. In this qualitative study, semi-structured interviews were conducted via video-conferencing software and electronic surveys. Participants were twelve adult-child caregivers of mothers with late-stage dementia, recruited in online communities related to caregiving. Analysis followed an inductive grounded theory approach for the purpose of theory construction. We identified three coping profiles along a spectrum of distress: Adaptive Coping, Coping in Pain, and Ruptured Identity, which described patterns of participants’ (N=12, Female=92%, aged 49-67, White=83%) experiences and meaning-making regarding their mother's unresponsiveness. Adaptive Coping illustrated participants with more caregiving benefits and self-care practices relative to the other coping profiles. Coping in Pain characterized participants with less self-care, less expressed empathy for their mother, and more mentions of intense emotional pain. Ruptured Identity described participants who experienced injuries to sense-of-self. Without means to reality-test injured self-perceptions in conversation with their mother, participants with Ruptured Identity felt helpless