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Pre‐loss group therapy for dementia family care partners at risk for complicated grief

Abstract Introduction Dementia family caregiving may span more than a decade and places many family care partners (CPs) at risk for poor bereavement outcomes; estimates of complicated grief in bereaved dementia family CPs range from 10% to 20%. We adapted our efficacious complicated grief group therapy intervention for bereaved dementia caregivers for soon‐to‐be bereaved dementia CPs at risk for complicated grief to facilitate healthy death preparedness and eventual bereavement—pre‐loss group therapy (PLGT). Methods In this Stage IB pilot intervention study, we implemented and evaluated PLGT in three psychotherapy group cohorts with family CPs at‐risk for complicated grief whose person living with dementia (PLWD) had a life expectancy of 6 months or less and resided in a nursing home. PLGT is a 10‐session multi‐modal psychotherapy administered by social workers. Results Participants in PLGT realized significant improvement in their pre‐loss grief and in reported preparedness for the death of their family member, and participants evidenced lowered pre‐loss grief severity and improvement, as measured by facilitators. Participants also realized significant improvement in meaning making, particularly as a sense of peace and a reduction of loneliness. Discussion The process and treatment elements of the PLGT intervention affirm the value of specialized care for those dementia family CPs at risk for complicated grief, as the PLGT groups demonstrated a steady progression toward improvement collectively and individually. PLGT participants realized statistical and clinical improvement across pre‐loss grief measures suggesting that their risk for complicated grief risk was mitigated, and they were better prepared for the death of their PLWD.


BACKGROUND
Comprehensive family dementia caregiver support should include appropriate preparation for the death of the person living with dementia (PLWD). While most people navigate the loss of a family member to dementia with coping skills, social supports, and time, 10% to 20% of grievers experience a state of prolonged, ineffective mourning known as complicated grief. 1,2 Unlike normal grief, complicated grief is characterized by unabated maladaptive thoughts, feelings, and behaviors that obstruct adjustment. The REACH 3 and CASCADE 4 studies reported complicated grief in bereaved caregivers and called for treatment and prevention strategies to mitigate poor bereavement outcomes.
Dementia caregiving requires ongoing adjustment within the family care partner-PLWD dyad, particularly as the care partner (CP) prepares for the loss of this significant relationship. 5,6 An inability to accommodate relationship change and the eventual death of the PLWD predicts ineffective post-death integration of grief. [7][8][9] Other known complicated grief risk factors in dementia caregivers include positive view of the caregiving role, perceived gratifying communication with the PLWD, high expressed affection by the CP, and high perceived caregiving burden. 10 Dementia caregiving is also associated with depression and anxiety, known risk factors for complicated grief. 11 Nursing home admission also contributes to risk for poor bereavement in highrisk dementia CPs; those who cared for their PLWD at home evidence still higher risk upon nursing home placement. 12 A recent systematic review indicated that lack of preparedness and pre-loss experiences are most predictive of poor bereavement outcomes and advocated for targeted support to caregivers who are at risk of adverse bereavement outcomes. 13 Our earlier work assessing family caregivers in the final months before the death of their PLWD revealed those caregivers who experienced the family member's decline as traumatic, who strongly expressed concern for loss of the caregiver role, who reported unavailable support, and exhibited difficulties anticipating a new life reported inadequate death preparation and difficulty making meaning of the illness and death. 14 While meeting the educational needs of most family CPs, caregiver support groups, such as those provided by the Alzheimer's Association, are insufficient to prepare for the death of the PLWD in CPs at risk for complicated grief. Complicated grief requires psychotherapeutic intervention and persons with complicated grief are known to have suboptimal response to groups that are merely psychoeducational and supportive. 15,16 The purpose of this study was to develop, implement, and evaluate a theoretically grounded group psychotherapy intervention to attenuate the risk of complicated grief and facilitate constructive, healthy grief in family CPs of PLWD who are at risk for complicated grief.

PRIOR INTERVENTION RESEARCH
A systematic review and companion paper outlining the review protocol by Wilson

Intervention development: translating complicated grief group therapy into pre-loss group therapy
In our previous research, we developed complicated grief group therapy as a group-therapy adaptation of Shear's complicated grief therapy for individual psychotherapy, the only treatment for complicated grief with established effectiveness. 20,21 Group interventions bring the additional benefits of shared experience, reduction of social isolation, and cost savings to the care of persons with complicated grief. We administered complicated grief group therapy to bereaved dementia family CPs in a randomized controlled trial and demonstrated statistically and clinically significant improvement across grief measures.
We evaluated detailed narratives and the individual progress of grief change in participants to identify complicated grief group therapy treatment elements with potential to attenuate complicated grief if applied to high-risk family dementia CPs prior to the death of their PLWD. 22 As we developed complicated grief group therapy, two theoretical frameworks contributed to our understanding of compli- (GMRI), which detects change in meaning-making. 36 We adapted the complicated grief group therapy intervention for complicated grief in bereaved dementia caregivers for soon-to-be bereaved dementia caregivers at risk for complicated grief to facilitate healthy death preparedness and eventual bereavement-preloss group therapy (PLGT). We used empirically validated procedures for developing psychosocial intervention manuals 37 (Table 1).

Setting
Three nursing homes were selected for inclusion in this study, one veterans' home, one for-profit facility, and one not-for-profit facility with a majority of residents funded by Medicaid. All facilities were highly rated on Medicare.gov and were located in a metropolitan location in the western United States.

Participants
Participants were family CPs at risk for complicated grief with a family member diagnosed with dementia having a life expectancy of less than 6 months who resided in one of the facilities included in this study. We focused on family CPs with PLWD residents nearing death as they were temporally closer to their grief/death preparedness experience, permitting timely post-death follow-up. Residents may or may not be enrolled in hospice care. Because palliative care and hospice care are underused for residents with dementia in long-term care, 40 and because even meticulous hospice care does not include group support for family CPs, we determined that hospice participation would not likely impact our study.

Participant assessment
Participants were assessed by the research assistant on demographic information, the pre-loss Inventory of Complicated Grief (ICG-r), 42 the preparedness question, 3

Treatment fidelity
To ensure PLGT facilitator competence, adherence, and quality of implementation, the three facilitators had weekly peer supervision sessions. In addition, two randomly selected sessions of each 10-week group (six total sessions over the study) were audiotaped and evaluated for treatment fidelity using Mignogna et al.'s audit and feedback tool, 49,50 commonly used in clinical intervention implementation trials to assess manual adherence and clinical skills. Audio recordings were evaluated by an independent clinician evaluator familiar with complicated grief therapies, but unaffiliated with the study.

Sample
Sample recruitment, allocation, and retention are presented in Figure 1. As expected, many of the family CPs interviewed did not meet the risk threshold for expected poor bereavement. Yet, a sufficient pool was identified to justify a group therapy approach in each of the facilities. A sample of 25 family CPs were enrolled as PLGT participants.
The sample had an average age of 67 years, was mostly White and female, and included 48% adult child CPs and 32% spouse CPs. The majority of participants endorsed multiple prior losses (96%) and additional life stressors (95.8%), and burden was endorsed as experienced "nearly always" by more than half of participants and "quite frequently" by another 29.2% (Table 2).

Intervention findings
Intervention participation for the 10 Table 3 displays the median values, Z statistics, and P statistics.
All tests showed a decrease in scores at the end of study with statistically significant results at P < .05 for the GMRI subscales of peace and emptiness, GMRI total, BQG total, ICG total, and PHQ. Notably, mean change in pre-loss grief, as measured by both the BGQ and the ICG,

DISCUSSION
We developed PLGT as a theoretically grounded, multi-element, manualized group psychotherapy intervention tailored to treat the unique risk for complicated grief known to exist in 10% to 20% of dementia family CPs nearing the death of their PLWD. We successfully identified and enrolled participants in three PLGT groups in three nursing homes and experienced a very low rate of attrition.
The groups were well attended, and participants found the therapy important to note that this risk reduction does not mean that the PLGT participants in our study will not grieve, nor that they will not experience the distress of acute grief upon death of their PLWD; 15 rather, it suggests that they will be better equipped to experience their grief with equanimity and progress toward a sense of completion in their caregiver role.

Clinical utility
The lives of many PLWD conclude in nursing homes and, while many dementia family CPs experience burden relief upon nursing home placement, for many others, this is a profoundly distressing phase of caregiving. PLGT is efficacious and suitable for delivery in nursing homes by nursing home social workers, who are already connected to family CPs individually and in group settings such as family councils and dementia support groups. PLGT may also have application in hospice, and in community practice settings using the existing social work workforce. Given the prevalence of complicated grief risk in dementia family CPs as their PLWD near death in nursing homes, it is essential to apply and evaluate preventive strategies that assist in preparation for eventual bereavement of family CPs; and to train appropriate clinicians to provide targeted PLGT.

Study strengths and limitations
This study included evidence-based procedures for intervention development and manualization and is now a Stage III behavioral intervention, according to the National Institutes of Health stage model. 50 The primary limitation of the study is sample size, and the lack of a control condition. The study has threats to external validity, as it is uncertain how generalizable the study findings will be to the general population of family CPs at risk for complicated grief who have not experienced the nursing home. It is possible that persons willing to participate in group therapy already have lower levels of social isolation and/or are more comfortable using social support available in groups than nonparticipants. This study sample did not reflect the diversity of dementia family CPs across the United States, and treatment response may not be generalizable to ethnic and racial groups with different needs and caregiving patterns. This research is appropriately viewed as a pilot study of the PLGT intervention.

Next steps in PLGT research
This study reports participant change in pre-loss grief risk at the conclusion of the intervention. We are evaluating post-death grief, and obtaining PLGT participant feedback to further refine the intervention. We are evaluating PLGT clinician training of nursing home social workers and evaluating their implementation of PLGT. We will modify the PLGT manuals for facilitators and participants and prepare for a larger pragmatic trial of PLGT. This pragmatic trial will be conducted using a stepped-wedge design to generate a wait-list control condition to further evaluate clinical efficacy of PLGT, and examine the feasibility and acceptability of both PLGT training of nursing home social workers, and participant adoption and adherence. If proven to be effective in attenuating poor bereavement outcomes in larger studies, PLGT could be translated into comprehensive caregiver support programs and delivered to active CPs of PLWD at risk for complicated grief in nursing homes, hospices, and through communitybased programs.

CONCLUSION
Dementia family caregiving may span more than a decade and places many family CPs at risk for poor bereavement outcomes. Complicated grief remains underrecognized, underdiagnosed, and undertreated in this population. Few efforts to address the prevention of complicated grief have been identified. This study is the first known application of proven therapeutic strategies to address complicated grief applied to high-risk dementia CPs prior to PLWD death to mitigate complicated grief. PLGT brings the additional advantages of group therapy, addressing the social isolation common among long-term family CPs.
The results of this study support prior research recommending specialized preventative treatment for dementia family CPs at risk for complicated grief upon death of their PLWD.

ACKNOWLEDGMENTS
This project was funded by the Alzheimer's Association grant # AARG-

CONFLICTS OF INTEREST
The authors have no conflicts of interest to report.