Loss and Grief in the Context of Dementia Caregiving

Abstract

As a universal human reaction to perceived and/or actual loss, grief is becoming increasingly pervasive at all levels of society. Among the broad spectrum of loss experiences, those associated with dementia are perhaps of the most complex. The shift toward considering loss and grief within the context of dementia caregiving is promising. However, pre-loss grief is understudied, and interventions are lacking. Only few studies have evaluated the effectiveness of pre-loss psychosocial grief interventions for dementia caregivers. Preliminary findings from an ongoing clinical trial testing the effects of an 8-week, group-based online video intervention with dementia caregivers indicate that compared to pre-coronavirus disease 2019 pandemic, the experience of loss and separation was exacerbated by loss of control and severe physical contact restrictions in long-term care facilities. Finding effective grief interventions that can be translated into clinical and community-based environments is necessary to alleviate dementia caregivers’ emotional distress and improve their quality of life.

Graphical Abstract

As a universal human reaction to perceived and/or actual loss, grief is categorized in the literature as pre-death (Supiano et al., 2021), anticipatory (Dehpour & Koffman, 2022), acute (Meichsner et al., 2020), prolonged (Prigerson et al., 2009), complicated (Bertuccio & Runion, 2020), or disenfranchised (Thompson & Doka, 2017). Theoretical models have been developed to guide specific interventions tailored to address loss and grief in various contexts (Blandin & Pepin, 2017; Boss, 2016; Kübler-Ross & Kessler, 2005; Neimeyer et al., 2006), including grief related to cross-generational historical group traumas and unresolved grief (Moore et al., 2022). In addition, a number of valid and reliable instruments have been specifically designed to capture grief and its complex manifestations (Marwit & Meuser, 2002; Prigerson et al., 2009).

The purpose of the current article is to discuss loss and grief in the context of dementia caregiving using specific examples of pre-death grief interventions for family caregivers who placed loved ones in long-term care (LTC). Qualitative preliminary findings emphasizing coronavirus disease 2019 (COVID-19) pandemic-related exacerbation in caregiver loss experiences are presented.

DEMENTIA GRIEF

Among the broad spectrum of loss experiences, those associated with dementia are among the most complex. As a syndrome, dementia is characterized by persistent memory loss extending over a number of years, resulting in a domino effect of neurocognitive changes that ultimately lead to death. In the process of caring for someone diagnosed with dementia, family members find themselves in a paradoxical situation: they are witnessing a gradual decline in every defining aspect of who that person used to be, a death in slow motion, while the person is still physically alive. Overwhelmingly, relationships are severely affected and must be redefined in the context of dementia caregiving.

Boss (2016) describes this type of psychological loss as “ambiguous,” a paradoxical “here, but not here” (p. 270) situation resulting in a state of “frozen” grief. She proposes that this kind of grief defies existing grief theories where the expectation is for eventual closure. Instead, Boss (2016) advocates for a dialectical approach, where some of the main goals are to normalize ambivalence and find meaning and new hope. Similarly, Blandin and Pepin (2017) describe the experience of ambiguous loss as a liminal or transition state. Their model proposes therapeutic interventions at every major point in the process: “acknowledging loss in separation, tolerating difficult feelings in liminality, and behavioral adaptations in re-emergence” (Blandin & Pepin, 2017, p. 74).

GRIEF INTERVENTIONS

A number of interventions have been created to mitigate the effects of grief on dementia family caregivers’ mental health. Few focus on pre-death grief (Wilson et al., 2017) and even fewer address pre-death grief after care recipient’s placement in LTC (Paun et al., 2015; Supiano et al., 2021). LTC placement is a turning point in the dementia caregiving experience marked by grief exacerbated by additional losses and guilt about placement. Supiano et al. (2021) created a 10-session group-based psycho-therapy intervention and tested it with caregivers whose family members with dementia resided in LTC and had a life expectancy of ≤6 months. Using a small sample (N = 25), this pilot study found significant improvement in participants’ pre-loss grief and in their ability to make sense of the situation and experience a sense of peace (Supiano et al., 2021).

Paun et al. (2015) created a 12-session, group-based chronic grief management intervention (CGMI) and tested it in a pre-test, multiple post-test quasi-experimental study with 83 family caregivers (CGMI, n = 34; attention control, n = 49) whose family members with dementia resided in LTC. Findings indicated that the CGMI was feasible for implementation and resulted in significant improvement in caregivers’ knowledge about end-stage dementia and their heartfelt sadness and longing (subscale of the Marwit-Meuser Caregiver Grief Inventory [Marwit & Meuser, 2002]) at 3 months and a significant improvement in their sense of guilt about placement maintained at 6-month follow up.

Based on these promising results, Paun and Cothran (2019) adapted the CGMI to an eight weekly sessions, group-based online video format (CGMI-V). Session topics included knowledge about late-stage dementia, communication and conflict resolution, hands-on care skills (Sessions 1 through 4), and loss processing and grief management (Sessions 5 through 8). The adapted CGMI-V intervention was tested in a pilot study with a single group of dementia family caregivers and was found feasible. Caregivers reported ease of technology use and ability to relate with each other in the virtual group format. The CGMI-V is now being tested in an ongoing clinical trial (Clinicaltrials.gov: NCT# 03593070). A preliminary narrative analysis was conducted to compare loss and grief in study participants before (n = 10/three group cohorts) and during (n = 19/four group cohorts) the COVID-19 pandemic using transcripts of CGMI-V Session 5 that was dedicated to processing loss and separation from the care recipient through placement. Across cohorts, the majority of caregivers were adult children of care recipients.

Three major themes emerged across cohorts: (1) losses experienced through-out years of dementia caregiving, (2) separation aspects related to placement, and (3) the process of emotional acceptance of loss and separation. Compared to the pre-COVID-19 pandemic period, the experience of loss in the context of the pandemic was exacerbated by loss of control due to severe access restrictions (e.g., “No control over what happens with my loved one,” “No idea what’s going on with her,” “How she really is doing”) and anxiety about the unknown and uncertainty about their family member’s condition (e.g., “Don’t know what to expect anymore”). In addition, the experience of separation was exacerbated by the physical separation imposed by pandemic-related contact/access restrictions (e.g., “Not being able to visit, not even window visits, is painful and unfair…we can’t have a meaningful conversation over the phone or on the tablet”).

Overall, the process of emotional acceptance of loss and separation was described as unfolding across a continuum from complete lack of acceptance to spiritual acceptance pre- and during the COVID-19 pandemic (e.g., “I can’t accept it [separation], it’s inhumane”; “Accepting that one is doing their best under the circumstances”; “I am not a religious person, but I am spiritual and I feel acceptance when I am in nature”). In summary, these preliminary findings from the ongoing clinical trial emphasize the depth of loss in the context of dementia family caregiving post-placement and the added layer of burden imposed by the COVID-19 pandemic restrictions that severely affected the LTC environment.

IMPLICATIONS

Clinical

Bertuccio and Runion (2020) propose that clinicians consider grief reactions within specific personal and social contexts rather than through a pathological lens. Their argument is particularly pertinent in the context of the ongoing COVID-19 pandemic—a persistent, anxiety-producing reminder of endless losses and death for the past couple of years. In addition, for a deeper understanding of grief reactions, clinicians will want to acknowledge individuals’ historic contexts, where historical traumas across generations resulted in unresolved grief (e.g., Indigenous People of America, Black Americans, Holocaust survivors). For example, Moore et al. (2022) propose culturally appropriate grief interventions that take into account Black Americans’ deep sense of community connection and spirituality that were built along an extensive history of oppression and discrimination.

Loss and grief in the context of dementia caregiving imply additional clinical considerations. Meichsner et al. (2020) propose that grief assessment targets major changes occurring along the terminal illness trajectory (e.g., dementia), including changes in the caregiver’s relationship with the care recipient, caregiver’s understanding of the disease process, and their preparedness for the death of the care recipient. The idea of pre-loss preparedness through making sense of the dementia situation and framing eventual death as an end to suffering was found to benefit family caregivers after the death of their care recipient (Supiano et al., 2022). Moreover, Boss (2016) proposes dementia-specific grief interventions that are focused on building caregiver resilience rather than closure. Her intervention guidelines include: “finding meaning, adjusting mastery, reconstructing identity, normalizing ambivalence, revisiting attachments, and discovering new hope” (Boss, 2016, p. 274).

Research

For decades, dementia family caregiving research remained focused on interventions addressing stress and burden that consistently yielded modest effects on caregivers’ mental health outcomes (Park & Park, 2015). The shift toward a paradigm that takes into account the loss and grief associated with the dementia caregiving process is promising. However, pre-loss grief is understudied. One systematic review (Wilson et al., 2017) evaluating the effectiveness of pre-loss psychosocial grief interventions for dementia family caregivers identified only three studies, with only one randomized clinical trial. Thus, there is a definite need to design and test grief-focused interventions for dementia family caregivers. Finding effective grief interventions that can be translated into clinical and community-based environments is necessary to alleviate dementia caregivers’ emotional distress, improve their quality of life, and indirectly save precious resources in an already overwhelmed U.S. health care system.

CONCLUSION

As a universal reaction to perceived and/or actual loss, grief has to be considered within personal, social, and historical contexts. Grief in reaction to long-term losses associated with dementia family caregiving requires complex interventions that take into account its ambiguous nature and aim to assist caregivers in finding meaning rather than closure. Mental health care providers must assess and intervene without pathologizing grief.