Addressing issues related to geropsychiatry and the well-being of older adults

Aging Matters

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Loss and Grief in the Context of Dementia Caregiving

As a universal human reaction to perceived and/or actual loss, grief is categorized in the litera-

ture as pre-death (Supiano et al., 2021), anticipatory (Dehpour & Koff man, 2022), acute (Meichsner et al., 2020), prolonged (Prigerson et al., 2009), com- plicated (Bertuccio & Runion, 2020), or disenfranchised (Th ompson & Doka, 2017). Th eoretical models have been developed to guide specifi c interven- tions 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 his- torical group traumas and unresolved grief (Moore et al., 2022). In addition, a number of valid and reliable instruments have been specifi cally designed to cap-

ture grief and its complex manifestations (Marwit & Meuser, 2002; Prigerson et al., 2009).

Th e purpose of the current article is to discuss loss and grief in the context of dementia caregiving using specifi c ex- amples of pre-death grief interventions for family caregivers who placed loved ones in long-term care (LTC). Qualita- tive preliminary fi ndings emphasizing coronavirus disease 2019 (COVID-19) pandemic-related exacerbation in care- giver loss experiences are presented.

DEMENTIA GRIEF Among the broad spectrum of loss

experiences, those associated with de- mentia are among the most complex. As a syndrome, dementia is characterized by persistent memory loss extending over a

ABSTRACT As a universal human reaction to per- ceived and/or actual loss, grief is be- coming 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 evaluat- ed the eff ectiveness of pre-loss psycho- social grief interventions for dementia caregivers. Preliminary fi ndings from an ongoing clinical trial testing the ef- fects of an 8-week, group-based online video intervention with dementia care- givers 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 ef- fective grief interventions that can be translated into clinical and community- based environments is necessary to al- leviate dementia caregivers’ emotional distress and improve their quality of life. [Journal of Psychosocial Nursing and Mental Health Services, 60(10), 7-10.]

Olimpia Paun, PhD, PMHCNS-BC, FGSA; Dimitra Loukissa, PhD; Marianne G. Chirica, MS; and Horace M. Nowell, III, MPH

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number of years, resulting in a domino eff ect of neurocognitive changes that ul- timately lead to death. In the process of caring for someone diagnosed with de- mentia, family members fi nd themselves in a paradoxical situation: they are wit- nessing a gradual decline in every defi n- ing aspect of who that person used to be, a death in slow motion, while the person is still physically alive. Overwhelmingly, relationships are severely aff ected and must be redefi ned in the context of de- mentia 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 defi es existing grief theories where the expectation is for eventual closure. In- stead, Boss (2016) advocates for a dialec- tical approach, where some of the main goals are to normalize ambivalence and fi nd meaning and new hope. Similarly, Blandin and Pepin (2017) describe the experience of ambiguous loss as a liminal or transition state. Th eir model proposes therapeutic interventions at every major point in the process: “acknowledging loss in separation, tolerating diffi cult 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 eff ects of grief on dementia family caregivers’ men- tal health. Few focus on pre-death grief (Wilson et al., 2017) and even fewer ad- dress pre-death grief aft er care recipient’s placement in LTC (Paun et al., 2015; Supiano et al., 2021). LTC placement is a turning point in the dementia caregiv- ing experience marked by grief exacer- bated by additional losses and guilt about placement. Supiano et al. (2021) cre- ated 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

signifi cant 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 fam- ily 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 signifi – cant improvement in caregivers’ knowl- edge 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 signifi cant 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 confl ict resolution, hands-on care skills (Sessions 1 through 4), and loss process- ing and grief management (Sessions 5 through 8). Th e adapted CGMI-V inter- vention was tested in a pilot study with a single group of dementia family care- givers and was found feasible. Caregiv- ers reported ease of technology use and ability to relate with each other in the vir- tual group format. Th e CGMI-V is now being tested in an ongoing clinical trial (ClinicalTrials.gov: NCT# 03593070). A preliminary narrative analysis was con- ducted 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 us- ing transcripts of CGMI-V Session 5 that was dedicated to processing loss and sep- aration from the care recipient through placement. Across cohorts, the majority of caregivers were adult children of care recipients.

Th ree 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 accep- tance 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 uncer- tainty about their family member’s con- dition (e.g., “Don’t know what to expect anymore”). In addition, the experience of separation was exacerbated by the physi- cal 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 ac- ceptance of loss and separation was de- scribed 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 cir- cumstances”; “I am not a religious person, but I am spiritual and I feel acceptance when I am in nature”). In summary, these preliminary fi ndings from the ongoing clinical trial emphasize the depth of loss in the context of dementia family caregiv- ing post-placement and the added layer of burden imposed by the COVID-19 pan- demic restrictions that severely aff ected the LTC environment.

IMPLICATIONS Clinical

Bertuccio and Runion (2020) propose that clinicians consider grief reactions within specifi c personal and social con- texts rather than through a pathologi- cal lens. Th eir 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 under-

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Aging Matters

standing of grief reactions, clinicians will want to acknowledge individuals’ historic contexts, where historical trau- mas across generations resulted in un- resolved 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 com- munity connection and spirituality that were built along an extensive history of oppression and discrimination.

Loss and grief in the context of de- mentia caregiving imply additional clinical considerations. Meichsner et al. (2020) propose that grief assessment targets major changes occurring along the terminal illness trajectory (e.g., de- mentia), including changes in the care- giver’s relationship with the care re- cipient, caregiver’s understanding of the disease process, and their preparedness for the death of the care recipient. Th e idea of pre-loss preparedness through making sense of the dementia situation and framing eventual death as an end to suff ering was found to benefi t family caregivers aft er the death of their care re- cipient (Supiano et al., 2022). Moreover, Boss (2016) proposes dementia-specifi c grief interventions that are focused on building caregiver resilience rather than closure. Her intervention guidelines in- clude: “fi nding meaning, adjusting mas- tery, reconstructing identity, normaliz- ing ambivalence, revisiting attachments, and discovering new hope” (Boss, 2016, p. 274).

Research For decades, dementia family caregiv-

ing research remained focused on inter- ventions addressing stress and burden that consistently yielded modest eff ects on caregivers’ mental health outcomes (Park & Park, 2015). Th e shift toward a paradigm that takes into account the loss and grief associated with the dementia caregiving process is promising. How- ever, pre-loss grief is understudied. One systematic review (Wilson et al., 2017) evaluating the eff ectiveness of pre-loss

psychosocial grief interventions for de- mentia family caregivers identifi ed only three studies, with only one random- ized clinical trial. Th us, there is a defi nite need to design and test grief-focused in- terventions for dementia family caregiv- ers. Finding eff ective grief interventions that can be translated into clinical and community-based environments is nec- essary to alleviate dementia caregivers’ emotional distress, improve their quality of life, and indirectly save precious re- sources in an already overwhelmed U.S. health care system.

CONCLUSION As a universal reaction to perceived

and/or actual loss, grief has to be con- sidered within personal, social, and historical contexts. Grief in reaction to long-term losses associated with demen- tia family caregiving requires complex interventions that take into account its ambiguous nature and aim to assist caregivers in fi nding meaning rather than closure. Mental health care provid- ers must assess and intervene without pathologizing grief.

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From Rush University College of Nursing (O.P., H.M.N.) and North Park University (D.L.), Chicago, Illinois; and Indiana University, Bloomington, Indi- ana (M.G.C.).

Disclosure: The authors have disclosed no po- tential confl icts of interest, fi nancial or otherwise.

Funding: Studies discussed in this article were supported by funding from the National Institute of Nursing Research (CGMI), Rush University College of Nursing Research Resource Fund (CGMI-V/pilot) and National Institute on Aging (CGMI-V/clinical trial).

Address correspondence to Olimpia Paun, PhD, PMHCNS-BC, FGSA, Rush University College of Nursing, 600 S. Paulina Avenue, Suite 1080 AAC, Chicago, IL 60612; email: [email protected]

doi:10.3928/02793695-20220909-01

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