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

Abstract

The number of family members caring and caregiving for a loved one undergoing physical and mental changes continues to increase dramatically. For many, this ongoing experience not only involves the “burden of caregiving” but also the “burden of grief” as their loved-one’s newfound medical condition can result in the loss of the person they previously knew. Dramatic cognitive, behavioral, and personality changes, often leave caregivers bereft of the significant relationship they shared with the affected person prior to the illness or injury. This results in what we term conditions of acquired “non-death interpersonal loss” (NoDIL). Current approaches to these losses use an amalgam of models drawn from both death and non-death loss. Despite their utility, these frameworks have not adequately addressed the unique processes occurring in the interpersonal sphere where the grieving caregiver needs to reach some modus vivendi regarding the triad of “who the person was,” “who they are now,” and “who they will yet become.” In this paper we propose a process-based model which addresses cognitive-emotional-behavioral challenges caregivers meet in the face of their new reality. These require a revision of the interpersonal schemas and the relationships that takes into account the ongoing interactions with the affected family member. The model and its utility to identify adaptive and maladaptive responses to NoDIL is elaborated upon with clinical material obtained from caregivers of people diagnosed with major neuro-cognitive disorder and pediatric traumatic brain injury. The article concludes with implications for theory, research and clinical intervention.

Caregivers in anorexia nervosa: is grief underlying parental burden?

“…Yet published contributions to the ED field based on non-death loss and grief theories are very rare and to our knowledge only one publication has proposed a specific loss and grief treatment model and program for parents of AN adolescents [ 26 ]. Extrapolating from this model, as well as from Yehene et al’s [ 64 ] and Boss et al’s [ 23 ] models of acquired non-death interpersonal loss, the grief process in adolescent AN appears to be particularly complex. First, it involves letting go of the person as she/he was before the illness, of one’s relationship with that “old” person, of one’s former dreams and expectations regarding that person: indeed, both the illness and the child as a developing individual preclude going back to this previous person/relationship.…”

Risk, Resilience, and the Two-Track Model of Dementia Grief Among Spouses of People Living With Cognitive Decline

“…The findings of the present study are in line with the existing empirical database on the issue of the adverse consequences of the level of burden and personal sacrifice as a result of the caregiver’s role in the functional and mental state of the family members of a person living with AD/ADRD (e.g., Cheng et al, 2019 ; Holley & Mast, 2009 ; Meichsner et al, 2020 ). The interaction between the objective aspects of burden and the subjective elements involved also suggest that better psychological relationships with the ill spouse mitigate to some degree the experience of burden ( Yehene et al, 2021 ).…”

“…It is estimated that the number of people living with dementia would increase from 57.4 million cases globally in 2019 to 152.8 in 2050 (Nichols et al, 2022). This "silent pandemic" (Yehene et al, 2021) will greatly add to the strain on the healthcare systems including the provision of palliative medicine worldwide (Connor & Rubin, 2022). The expansion in numbers will greatly impact the informal patient support networks comprised mainly of spouses and adult children, who provide much of the daily care required (Wimo et al, 2013).…”

Living with Parkinson’s disease: A qualitative study of spousal perspectives

“…Ambiguity complicates the process of grief, prevents cognition and coping, and could result in fractures in or entire loss of relationships with friends, as they are left uncertain as per how to support (Boss, 2010). Ambiguity may fracture meaning reconstruction of loss, and without any sense of meaning, hope for reprieve or closure is scarce at best (Boss, 1999, 2006, 2007, 2010; Fuchs, 2018; Yehene etal., 2021). Spouses attempted to grieve for and find meaning in the multiple non-death losses they had witnessed and experienced after diagnosis, even as they were interviewing for the current study.…”

“…Furthermore, since both the quantitative and the qualitative investigations thus far have mainly focused on uncovering factors that contribute to pathology, there may still be potential gaps in our understanding of the experiences of spouses. When more and more studies in the field of psychology emerge that shift the focus from pathology toward theories and models that normalize coping and grief reactions (Boerner etal., 2015; Granek, 2010; Yehene etal., 2021), it seems essential that these experiences are given another observation.…”