Review of Issue: Focusing on the Caregiver: Grief in Dementia Caregiving

Cancer patients and their family caregivers experience various losses when patients become terminally ill, yet little is known about the grief experienced by patients and caregivers and factors that influence grief as patients approach death. Additionally, few, if any, studies have explored associations between advance care planning (ACP) and grief resolution among cancer patients and caregivers. To fill this knowledge gap, the current study examined changes in grief over time in patients and their family caregivers and whether changes in patient grief are associated with changes in caregiver grief. We also sought to determine how grief changed following the completion of advance directives. The sample included advanced cancer patients and caregivers (n = 98 dyads) from Coping with Cancer III, a federally funded, multi-site prospective longitudinal study of end-stage cancer care. Participants were interviewed at baseline and at follow-up roughly 2 months later. Results suggest synchrony, whereby changes in patient grief were associated with changes in caregiver grief. We also found that patients who completed a living will (LW) experienced increases in grief, while caregivers of patients who completed a do-not-resuscitate (DNR) order experienced reductions in grief, suggesting that ACP may prompt “grief work” in patients while promoting grief resolution in caregivers.

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Emory Roybal Center for Dementia Caregiving Mastery: Diverse Responses to Letter of Intent Call

Innovation in Aging ◽

10.1093/geroni/igaa057.816 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 254-254

Author(s):

Kenneth Hepburn ◽

Molly Perkins ◽

Drenna Waldrop ◽

Leila Aflatoony ◽

Mi-Kyung Song ◽

...

Keyword(s):

Clinical Trial ◽

Lewy Body Dementia ◽

Racial Groups ◽

Dementia Caregiving ◽

Wide Range ◽

Great Heterogeneity ◽

New Research ◽

Stage 1 ◽

Native Alaskan ◽

Physical Care

Abstract This new NIA-supported Roybal Center seeks to support Stage 1 pilot clinical trials of programs aimed at promoting caregiving competence and confidence in the great heterogeneity of dementia caregiving contexts. During our first cycle, we received 26 letters of intent (LOI) for full applications. Responses reaffirmed the Center’s premise that dementia caregiving is remarkably varied in nature. While most proposed programs focused on generic caregiving, a number addressed caregiving issues facing specific ethnic/racial groups (African American; Korean American; Native Alaskan/American Indian; Latino), and several focused on specific dementing conditions (MCI, Lewy Body Dementia,TBI-based dementia). Most described programs centered on knowledge development and daily management skill issues (e.g., management of behaviors); others specified development of physical care skills. Decision-making and communication constituted the second most common topic. Over 40% proposed adaptation of existing programs; more than 25% proposed apps or technology interventions. Investigators represented a wide range of disciplines: 45% each from Health sciences (nursing, medicine, and social work) and Social/Behavioral sciences (principally psychology) and the rest from engineering and communications. LOIs varied most in their readiness to complete a clinical trial within a year. About 40% were in very preliminary stages; 25% were clearly poised for a Stage 1 trial; 15% did not sufficiently address the Center’s aims. Key criteria for invitations to submit full applications (n=4) included: specificity of context; clinical trial readiness; reasonableness of proposed adaptation. These criteria should guide future LOIs addressing the diversity of important new research and intervention perspectives on the multifaceted work of caregiving.

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