Applicability of the pre-death grief concept to dementia family caregivers in Asia

Introduction

Traditionally, the emotional needs of dementia family caregivers are conceptualized with the transactional model of stress and coping (Lazarus and Folkman, 1984; Pearlin et al., 1990). In this model, the focus is specifically on the emotion of stress, with emphasis on improving coping skills and lowering stress level. This has translated into caregiver services like disease education, skills training, stress management and respite care. However, stress is only one of the emotions experienced by caregivers, and there are a complex range of other emotions, such as guilt, denial, sadness and anger. From the recent evidence, this whole array of emotions can be better understood using the concept of pre-death grief (Blandin and Pepin, 2015).

Pre-death grief is the emotional response as dementia family caregivers mourn for the psychologically absent patient and anticipate impending losses (Blandin and Pepin, 2015). It is prevalent among dementia caregivers (Chan et al., 2013) and can be more overwhelming than hands-on care issues (Frank, 2007). Caregivers who do not recognize the presence of pre-death grief tend to deny the losses they experienced and attempt to control the uncontrollable progression of dementia. They become more paternalistic in their communication with the patients and more authoritarian in making decisions related to the patients. Such behaviours create inequity in the dyadic patient–caregiver relationship, with the caregivers feeling more helpless and the patients losing the sense of autonomy (Piiparinen and Whitlatch, 2011). With this understanding, it is not surprising that pre-death grief has been linked to negative consequences like caregiver burden (Holley and Mast, 2009), caregiver depression (Sanders and Adams, 2005; Chan et al., 2013) and caregivers' desire to institutionalize the patient prematurely (Walker et al., 1995).

However, the published literature on pre-death grief is derived primarily from the Caucasian population (Chan et al., 2013). Because the expression of grief varies with culture (Eisenbruch, 1984), the applicability of pre-death grief is uncertain in distinct, non-Caucasian populations. This study investigates the existence (primary aim) and the characteristics (exploratory aim) of pre-death grief in a multi-ethnic Asian population using a well-established pre-death grief scale—the Marwit–Meuser Caregiver Grief Inventory (MM-CGI).

Methods

Results

We recruited 72 participants. Table 1 shows the basic demographics of the participants and the patients with dementia they cared for.

Cronbach's alpha, which measured the internal consistency of responses, was 0.97 for MM-CGI. Meanwhile, the Cronbach's alpha was 0.94 for personal sacrifice burden subscale, 0.92 for heartfelt sadness and longing subscale and 0.89 for worry and felt isolation subscale.

Contrasting among the three scales of PG-12, ZBI and CES-D (Table 2), MM-CGI expectedly correlated stronger with PG-12 (Spearman's ρ = 0.79, p < 0.001) than with ZBI or CES-D, while personal sacrifice burden subscale correlated stronger with ZBI (ρ = 0.74, p < 0.001), heartfelt sadness and longing subscale with PG-12 (ρ = 0.76, p < 0.001) and worry and felt isolation subscale with PG-12 (ρ = 0.79, p < 0.001).

As hypothesized, heartfelt sadness and longing subscale correlated poorer with CES-D (ρ = 0.58, p < 0.001). MM-CGI also correlated poorly with finances subscale of ZBI (ρ = 0.37, p = 0.162) and positive affect subscale of CES-D (ρ = 0.33, p = 0.530).

Table 1 includes the p values derived from univariate regression analysis of factors related to MM-CGI. In multivariate linear regression (Table 3), factors associated with higher MM-CGI score included caring for patients with severe dementia, spousal relationship, secondary or below education and Malay ethnicity. Employment and primary caregiver status both had p > 0.05 and were removed from the final model.

Table 4 compares the MM-CGI total and subscale scores between the current study and the original US study (Marwit and Meuser, 2002). The worry and felt isolation subscale score was 13.8% higher in this study (p < 0.001), while the rest of the scores were comparable with those of the USA (marginal difference of −4.4% to 3.7%).

Discussion

Prior to this study, there were uncertainties about the applicability of pre-death grief concept to the Asian population. In many ways, this study supported the existence of pre-death grief in Asia and attests to the universality of human emotions. We showed that pre-death grief was measurable in a reliable and valid manner, using an established pre-death grief scale of MM-CGI. The risk factors of spousal caregivers and advanced dementia reported here were similarly highlighted in a systematic review of the Caucasian studies (Chan et al., 2013). Even the MM-CGI total and subscale scores were largely comparable with those of the USA (Marwit and Meuser, 2002). These results suggest a need for clinicians to be attuned to the pre-death grief experience of dementia caregivers even in the non-Caucasian populations. This is particularly important because pre-death grief in dementia caregivers is commonly disenfranchised (Frank, 2007), and its expression is not generally acceptable in society. Unless the clinicians inquire about its presence, dementia caregivers are unlikely to volunteer such feelings and will suffer in silence until they experienced the irrevocable adverse effects of pre-death grief. By such time, it may be too late to intervene.

This study also demonstrated the palpable influence of culture on pre-death grief. Asian caregivers showed more worries and felt isolation, and certain ethnicity experienced more pre-death grief. To attune to the pre-death grief experience of caregivers, clinicians need to be mindful of the disparate presentations of pre-death grief in different cultures. In the example of Asian caregivers, strong expression of worries and felt isolation may be an indicator of underlying pre-death grief. Such cultural sensitivity is also necessary to tailor person-centred interventions and to better support the emotional needs of caregivers in multi-ethnic populations. The influence of culture on pre-death grief is an area worth further exploration in future researches.

The caregiver risk factors in this study (spouse, lower education and selected ethnicity) paralleled the predictors of complicated post-death grief from a systematic review (Chan et al., 2013). Previous studies showed that greater pre-death grief is a key predictor of post-death complicated grief (Blandin and Pepin, 2015). Identifying shared risk factors between pre-death and post-death grief opens a window of opportunity to target efforts of case finding and early intervention in the pre-death setting. Such efforts can prevent the development of complicated grief following bereavement (Schulz et al., 2006; Holland et al., 2009).

One of the strengths of this study lies with the location where it was conducted. Singapore is a cosmopolitan city in Asia and holds a number of major Asian cultures, including that of the Chinese, Indian, Malay Muslim and Eurasian. This environment provided an opportune test bed to answer our research question on the applicability of pre-death grief in Asia. The results of this study have implications beyond the Singapore population alone. They alert readers on the likely presence of pre-death grief even in the other parts of Asia, and serve as an impetus for further researches on pre-death grief in Asia.

In this study, limited proportion of spousal caregivers participated because a number of them could only read in Chinese and not in English. We also restricted the number of variables entering multivariate regression so that the analyses remain valid given the sample size. Even with these two limitations, we have had reasonable evidence from this study to show that pre-death grief do exist among dementia family caregivers in Asia. We hope to better represent spousal caregivers and identify even more risk factors in our ongoing study involving Chinese MM-CGI and larger sample size.

Conclusion

In summary, pre-death grief is applicable even to the non-Caucasian population, and it is detectable with an objective scale like MM-CGI. Clinicians working with non-Caucasian populations need to be attuned to its presence and be sensitive to the influence of culture on its expression. Such postures are crucial to rein the adverse outcomes of pre-death grief.

Conflict of interest