Abstract

BackgroundAnticipatory grief (AG) among caregivers of people with dementia is common and has been found to be related to negative health outcomes. Previous studies showed different patterns of AG between spousal and adult children caregivers of people with dementia (PWD) at different stages; however, the levels of such grief are not yet compared. The findings in Western studies are very limited, and inconsistencies have also been found in Asian studies.MethodsOne hundred and eight primary caregivers (54 spousal and 54 adult children) of community-dwelling PWD were recruited from elderly community services sectors in Hong Kong, China through quota sampling. The demographics, AG (measured by the Marwit-Meuser Caregiver Grief Inventory-short form), subjective caregiver burden, and well-being of the participants were assessed. A Functional Assessment Staging Test was used to grade the stages of dementia of the PWD. In this study, those in stages 4 and 5 were regarded as being at an earlier stage, and those in stages 6 and 7 at a later stage of dementia.The Mann-Whitney U-test and the Chi-square test were used to compare the variables between spousal and adult children caregivers, and the Kruskal–Wallis test was used to compare the outcomes among the sub-groups (spousal caregivers caring for relatives with earlier/later stage dementia; and adult children caregivers caring for relatives with earlier/later stage dementia). A post-hoc analysis was also conducted to identify differences between the sub-groups. Pearson’s correlation was performed to investigate the bivariate relationships among AG, subjective caregiver burden, and well-being.ResultsThe results showed that spousal caregivers caring for relatives in a later stage of dementia experienced the highest level of AG and subjective caregiving burden, as compared with spousal caregivers caring for relatives in an earlier stage of dementia and adult children caregivers. Well-being was significantly negatively correlated with AG and subjective caregiver burden, while AG was also significantly correlated with subjective caregiver burden.ConclusionThis study found that spousal caregivers of relatives in a later stage of dementia have significantly higher levels of AG, warranting special attention and extra support from palliative professionals.

Highlights

  • Anticipatory grief (AG) among caregivers of people with dementia is common and has been found to be related to negative health outcomes

  • By comparing AG levels between the spousal and adult children caregivers of people at an earlier or later stage of dementia, this study further explores the association among AG, subjective caregiving burden, and well-being

  • The differences in outcomes variables between spousal and adult children caregivers and among sub-groups were compared using an Independent-t test and a One-way ANOVA respectively if the data were normally distributed, otherwise the Mann-Whitney U-test and the Kruskal-Wallis test were used

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Summary

Introduction

Anticipatory grief (AG) among caregivers of people with dementia is common and has been found to be related to negative health outcomes. They report gradual losses as the dementia progresses, including the loss of intimacy and companionship [2,3,4,5,6,7], or other losses related to the caregiver role such as personal freedom, social or occupational opportunities, recreational opportunities, role identity, and health [8]. Unresolved AG has a negative impact on the mental health [3, 11], physical health [12], and social relationships of caregivers, who are at a higher risk of developing complicated and prolonged grief after the death of the care recipients [13, 14]. AG was found to be associated with a higher likelihood that the care recipient with dementia will be placed in a long-term care setting [15, 16]

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