Comparing the Effects of Grief and Burden on Caregiver Depression in Dementia Caregiving: A Longitudinal Path Analysis over 2.5 Years

Abstract

Objectives: Caregivers of persons with dementia can experience loss and grief long before the death of the person. Although the phenomenon of caregiver grief has been increasingly described, it is uncertain if caregiver grief has independent effectsdseparate from the well-studied construct of caregiver burdendon adverse outcomes such as caregiver depression. We sought to compare the effects of baseline grief and burden on caregiver depression at baseline and 2.5 years later. Design and Setting: A cohort study with 2.5 years of follow-up. Participants: Family caregivers of community-dwelling persons with dementia (n ¼ 183). Measures: Participants completed questionnaires with scales that assessed caregiver grief, burden, and depression. Baseline grief and burden scores were included in a path analysis to predict depression at baseline and at 2.5 years. Results: At baseline, grief and burden had synergistic relationships with each other (P ¼ .012), where the high levels of grief amplified the effect of burden on caregiver depression. Both grief and burden had longitudinal effects on caregiver depression at 2.5 years (P <.001 and P ¼ .047, respectively), albeit with some differences in mechanism; both had effects which were indirectly mediated through baseline depression (P < .001 and P ¼ .002, respectively), but only grief had a direct path toward depression at 2.5 years (P ¼ .030), which was distinct from baseline depression. Conclusions and Implications: The findings highlight the need to identify and address caregiver grief in dementia services. They present a window of opportunity to improve caregiving outcomes, especially during the "latent phase" when caregivers encounter loss and grief but have yet to fully experience the debilitating effects of depression.

The Longitudinal Effects of Caregiver Grief in Dementia and the Modifying Effects of Social Services: A Prospective Cohort Study

“…Although caregiver grief may share some common risk factors with caregiver burden (such as later stage of dementia, behavioral problems in PWD, and primary caregiving role), there are also several risk factors that are unique to grief and differentiate grief from burden, including younger age of PWD, lower educational attainment of caregivers, and spousal caregiver 7 . In addition, caregiver grief has an independent effect (which is separate from that of burden) on the adverse outcome of caregiver depression 3 . It also has a synergistic relationship with caregiver burden, with high grief further amplifying the effect of burden on caregiver depression 3 …”

As demandas de cuidado e autocuidado na perspectiva do cuidador familiar da pessoa idosa com demência

“…Studies relate the grief experienced by the caregiver to multiple losses throughout the disease. Research on grief in caregivers has identified that, among the multiple losses that are experienced throughout the illness, are the loss of socialization, intimacy, communication, roles, and relationships [22][23][24][25] .…”

The Role of Advance Care Planning in Cancer Patient and Caregiver Grief Resolution: Helpful or Harmful?

“…Grief in this context has been described as the anticipation of one's own or a loved one's future death, coupled with the navigation of prior and ongoing losses as a result of a terminal illness [1][2][3]. It is often unrecognized or mistaken for mental disorders such as anxiety, posttraumatic stress, or depression [1,2,[4][5][6]. Evans [7] describes grief during caregiving as a "reaction to a multiple loss situation" rather than a reaction "to the loss incurred by the actual death" (p. 163).…”