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

Abstract

BACKGROUND: Caregivers of persons with dementia (PWD) can experience loss and grief long before the death of the PWD, with such caregiver grief postulated to affect the well-being of the PWD-caregiver dyads. However, the longitudinal effects of caregiver grief and the moderating effects of social services are not yet clear. OBJECTIVES: We investigated the longitudinal effects of caregiver grief on caregiver depression, caregivers' quality of life (QoL), and caregivers' perceived positive aspects of caregiving (PAC); and examined potential effect modification of social service utilization (dementia care services, caregiver programs, and paid caregivers). DESIGN AND SETTING: A prospective cohort study with three time points of assessments (at 0, 6, and 12 months). PARTICIPANTS: Family caregivers of community-dwelling PWD (n = 178). MEASUREMENTS: At time point 1 (baseline), participants completed questionnaires that captured caregiver grief, burden, and social service utilization. Outcomes that were captured over time were: depression (time points 1-3), QoL (time point 2), and PAC (time point 3). Caregiver grief as well as interaction terms with social service utilization were included in Tobit regression to examine the association with outcomes. RESULTS: After accounting for the effect of caregiver burden, caregiver grief remained associated with depressive symptoms (P < .001) and poorer QoL (P < .001). However, compared with burden, grief contributed to larger magnitudes of the adverse effects. Grief, not burden, was associated with less PAC (P = .006 and P = .746, respectively). In contrast, burden, not grief, was associated with poorer physical health (P = .010 and P = .110, respectively). Dementia care services attenuated the effect of burden but not grief; caregiver programs did not affect burden but appeared to aggravate the effect of grief; and paid caregivers attenuated the effect of burden, and partially attenuated the effect of grief. CONCLUSION: Caregiver grief has an impact on dementia caregivers, likely through a distinct mechanism from that of caregiver burden. However, prevailing social services may not be sufficient to address grief, highlighting the need to further train care workers in this respect.

A Comparison of Caregiver Burden for Different Types of Dementia: An 18-Month Retrospective Cohort Study

“…Taking care of AD patients is difficult and is often associated with a high burden of care, especially over a prolonged period of time (van den Kieboom et al, 2020 ). The burden of caregiving can reduce the quality of life of caregivers and cause depressive symptoms (Liew et al, 2020 ). A high care burden typically also reduces the work productivity of caregivers (Fujihara et al, 2019 ).…”

The feasibility and preliminary effects of a pilot randomized controlled trial: Videoconferencing acceptance and commitment therapy in distressed family caregivers of people with dementia

“…The Marwit–Meuser Caregiver Grief Inventory—Brief-Form (MM-CGI-BF) is a six-item self-report questionnaire assessing grief in caregivers of PLWD (i.e. losses, including anticipation of future losses) on a scale of 1–5 (Liew et al, 2020). Higher scores indicate higher levels of grief.…”

“…Higher scores indicate higher levels of grief. The MM-CGI-BF has good internal consistency, test-retest reliability, and construct validity in caregivers of PLWD (Liew et al, 2020).…”

“…Studies suggest that loss and grief in caregivers of PLWD should be acknowledged and addressed to prevent caregivers from struggling to fight the inevitable decline in PLWD, which can contribute to caregivers’ feelings of helplessness, perceived caregiving burden, and depressive symptoms and to nursing home admission in PLWD (Liew et al, 2019; Liew and Yap, 2020; Walker and Pomeroy, 1997). For example, longitudinal cohort studies found the direct effects of grief on predicting depression in family caregivers of PLWD at 2.5 years and poorer quality of life at 6 months (Liew et al, 2019, 2020).…”

Caregivers’ Grief in Acquired Non-death Interpersonal Loss (NoDIL): A Process Based Model With Implications for Theory, Research, and Intervention

“…Similar to the loss of highly significant relationships following death, which set into motion the grief and mourning processes, recent studies have showed the presence of grief among caregivers in various conditions. These include caregivers of people suffering from major neurocognitive disorder (Dementia) (Chan et al, 2013;Lindauer and Harvath, 2014;Liew et al, 2020;Meichsner et al, 2020;Manevich et al, 2021), Brain Injury (Marwit and Kaye, 2006;Petersen and Sanders, 2015;Yehene et al, 2021), and Disorders of Consciousness (de la Morena and Cruzado, 2013;Yehene et al, 2020), etc. However, despite the significant contribution of these studies, less is known about the mechanisms and processes underlying psychological reactions to such acquired NoDIL and what is the nature of the grief and mourning that follow in their wake.…”