Abstract
BackgroundCaregivers of persons with dementia (PWD) can experience loss and grief long before the death of the person. While such phenomenon of pre‐death grief (PDG) has been increasingly described, we are uncertain how it can be distinct from the well‐studied construct of caregiver burden.ObjectiveTo determine whether there are differences in the risk factors of PDG and caregiver burden to aid in our understanding of the relationship between the two constructs.MethodsSpouses or children of community‐dwelling PWD were consecutively sampled from two tertiary hospitals. They completed questionnaires containing a PDG scale, a caregiver burden scale, and information related to the caregiver and PWD. Risk factors of PDG and caregiver burden were identified using multivariate regression, within which PDG and caregiver burden scores were jointly included as two separate dependent variables.ResultsWe recruited 394 caregivers with a mean age of 53.0 years (SD 10.7), majority were Chinese (86.6%), children caregivers (86.3%), and primary caregivers (70.8%). In the regression analyses, we identified three risk factors which were shared by both PDG and caregiver burden (later stage of dementia, behavioral problems in PWD, and primary caregiving role) and three other risk factors which were unique to PDG alone (younger age of PWD, lower educational attainment of caregivers, and spousal caregiver).ConclusionsThe different risk factor profiles evidence a distinction between PDG and caregiver burden. They may possibly be distilled into a framework to direct our approach to PDG interventions, which may include using caregiver burden as an opportunity to initiate conversations on grief, exploring the various aspects of losses and encouraging adaptive coping.
Highlights
Caring for persons with dementia (PWD) can be stressful[1] and is not uncommonly associated with physical and emotional burden.[1,3] Caregiver burden, in turn, has been shown to predict less desirable outcomes such as premature nursing home placement[4] and mortality in PWD.[5]
In the simple regression analyses, variables identified as potential risk factors (P < 0.05) (Table 1) included those relating to the caregivers and the PWD
Three risk factors are shared by pre‐death grief (PDG) and caregiver burden, while three other risk factors are unique to PDG alone
Summary
Caring for persons with dementia (PWD) can be stressful[1] and is not uncommonly associated with physical and emotional burden.[1,3] Caregiver burden, in turn, has been shown to predict less desirable outcomes such as premature nursing home placement[4] and mortality in PWD.[5]. They may show emotional, cognitive, and behavioral responses to the multiple losses in caregiving,[8] which include the ambiguous loss due to increasing disconnectedness from the PWD who is physically present but psychologically absent, and the anticipation of future losses relating to the physical death of the person.[9] Such experience of loss and grief in the pre‐death context (which we refer to as “pre‐death grief” (PDG) in this paper) is less recognized[7,10] or understood, even though it can negatively impact the caregiver‐PWD dyadic relationship[11] and has been associated with adverse effects such as caregiver depression,[10,12] and caregivers' desire to institutionalize the PWD.[13]. Conclusions: The different risk factor profiles evidence a distinction between PDG and caregiver burden They may possibly be distilled into a framework to direct our approach to PDG interventions, which may include using caregiver burden as an opportunity to initiate conversations on grief, exploring the various aspects of losses and encouraging adaptive coping
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