"We Moved Her Too Soon": Navigating Guilt Among Adult Child and Spousal Caregivers of Persons Living with Dementia Following a Move into Residential Long-Term Care.

Title"We Moved Her Too Soon": Navigating Guilt Among Adult Child and Spousal Caregivers of Persons Living with Dementia Following a Move into Residential Long-Term Care.
Publication TypeJournal Article
Year of Publication2022
AuthorsStatz, TL, Peterson, CM, Birkeland, RW, McCarron, HR, Finlay, JM, Rosebush, CE, Baker, ZG, Gaugler, JE
JournalCouple Family Psychol
Volume11
Issue4
Pagination300-314
Date Published2022 Dec
ISSN2160-4096
Abstract

Guilt is a complex and multifaceted emotion navigated by many family caregivers. Guilt is sometimes experienced following a transition into a residential long-term care facility, even when the move is necessary given high care needs related to Alzheimer's disease and related dementias. This mixed methods study identifies and compares areas of guilt most frequently experienced by spouse and adult child caregivers (N=83) of a family member with dementia following transition into residential long-term care. Nearly half of caregivers reported experiencing guilt from their care recipient, other family members, or facility staff. Quantitative analyses explored variables that predict heightened feelings of guilt, and qualitative thematic analyses provided rich insight into subjective experiences of guilt. Person-specific and situational characteristics influenced caregiver guilt, including level of involvement in care, frequency and quality of visits, and perceptions of the residential long-term care facility. We identify specific opportunities for tailored couple and family psychology interventions including communication strategies, decision-making approaches, focusing on positives, psychoeducation, self-forgiveness exercises, stress management and self-care activities, and validation. The present work informs how counseling interventions can provide practical support by highlighting specific clinical mechanisms that help to alleviate common facets of caregiver guilt following a transition into residential long-term care. Critically, we distinguish variation between spouses and adult children to design treatment plans that best support clients who are caring for a person living with dementia in residential long-term care.

DOI10.1037/cfp0000150
Alternate JournalCouple Family Psychol
PubMed ID36743783
PubMed Central IDPMC9897423
Grant ListF32 AG064815 / AG / NIA NIH HHS / United States
R01 AG048931 / AG / NIA NIH HHS / United States
R01 AG049692 / AG / NIA NIH HHS / United States
UL1 TR002240 / TR / NCATS NIH HHS / United States