89 Pre-Loss Group Support (Plgs) for Family Care Partners of Persons Living with Dementia (Plwd): Perceptions of Nursing Home Administrators and Social Workers

Faculty Mentor: Katherine Supiano (Nursing, University of Utah)

Background

Project: Dementia family caregiving may span more than a decade and places many family care partners (CP) at risk for poor bereavement outcomes and a lack of preparation for the death of a person living with dementia (PLWD.) Prolonged grief disorder (formerly called Prolonged grief), is “a form of mourning characterized by yearning for the deceased, intrusive thoughts of the person who died, unrelenting sorrow, withdrawal from previous social relationships, difficulty accepting the death, and a sense that life is without purpose.” (Newton et al., 2011; Simon, 2015; Crunk et al., 2017.) Prolonged grief has been found in approximately 20% of bereaved dementia family caregivers. Prolonged grief remains under-recognized, underdiagnosed, and undertreated in this population. Few efforts to address the prevention of prolonged grief have been identified. Therefore, this study is funded by the Alzheimer’s Association to develop, evaluate, and implement PreLoss Group Support (PLGS). This is to prepare persons at high risk for prolonged grief, and facilitate a healthy grief process upon the death of their person with dementia. This is a pragmatic trial consisting of the training for nursing home social workers, and evaluation of the feasibility of their application of the PLGS intervention. PLGS is a 10-session multi-modal comprehensive psychotherapy, designed by Dr. Supiano, and intended to be administered by trained nursing home social workers (NH-SWs).

Stakeholders: Institutional “buy-in” is an essential component of pragmatic trials located in community settings. Administrators are well aware of, and concerned about family caregiver needs–as it impacts the wellbeing of residents. Nursing home staff are often presented with ‘complaints’ by the family. Often these are legitimate complaints, but they may also represent displaced guilt, and merit provision of support to the family. Families who express guilt about nursing home placement are at risk for prolonged grief. These family members are of greatest concern to the leadership team of nursing homes. To assess concerns of nursing home administrators, I conducted semi-structured interviews with 5 nursing home administrators to acquire the “stakeholder” viewpoint on family caregivers. The questions for the interview were created with the collaboration of my mentor, and the questions will address the administrator and facility concerns about the family caregivers of nursing home residents living with dementia.

Social Workers: Access to efficacious group interventions for dementia family caregivers has been limited by geography, social isolation, and lack of trained clinicians. The added impact of COVID-19, with visitation restrictions in nursing homes, and increased risk of death in residents with ADRD calls for immediate evaluation of telehealth interventions. Telehealth delivery of both social worker training and Pre-loss Group Support (PLGS) addresses this gap. Nursing home SWs are ideally situated in the practice setting and have clinical expertise to learn and implement PLGS, allowing simultaneous evaluation of telehealth SW training acceptability, suitability for nationwide dissemination, and the impact of telehealth delivered PLGS. As the NH-SWs are undergoing the PLGS clinical training, I will assess the NH-SW satisfaction with the PLGS training, as part of our evaluation of the pragmatic trial.

Method

Stakeholders: I conducted semi-structured interviews with 5 partner nursing home administrators and acquired the “stakeholder” viewpoint on family caregivers of residents with dementia. Questions included; asking who the administrators were, why they worked at the nursing home, services they offered, how placement works, challenges and concerns they may face within their facility with families’ preparation for a death of a PLWD. I conducted a qualitative analysis to synthesize NH administrator responses to interview questions.

Social Workers: Using professional actors, we created a simulated PLGS 10-session group as a series of training videos. The training utilized our Stage-3 PLGS Facilitator manual. And the training incorporated didactic content, interactive case examples, and pragmatic application concept of PLGS for telehealth delivery to CPs by NH-SWs. I interviewed and summarized training satisfaction surveys of our participant social workers as part of our evaluation.

Results

Stakeholders: After conducting interviews with the 5 administrators of the nursing homes and veteran homes, we have found administrators find it important that their PLWD be treated as a person. Administrators stated that they hope to have dementia seen as a disease, as something separate from the person. The disease does not define who the person is at the time they are diagnosed until the end of life.

Social Workers: The participant satisfaction surveys were done with a 7-item satisfaction scale with a range of 3-21, satisfaction rate was 95% (highly valuable), with 100% indicating they would recommend training to SWs in other facilities.

Conclusion

Nursing home administrators valued family CPs and wanted them treated with respect. My interviews with the nursing home social workers showed that they valued the training and were eager to support the families using the Pre-Loss Group Support. These interviews have guided the next steps of implementation of the PLGS pragmatic trial. I gained multiple perspectives to viewing how underrepresented communities gain mental health resources and assistance. From a professional business viewpoint, the nursing home administrators realize that when the PLWD is viewed as a human being, apart from the disease and is treated as a person, the family CPs feel less guilt. They are better able to appreciate and honor the staff which leads to an overall better community in the nursing homes. From a clinician viewpoint, the social workers believe training in dementia and the needs of family CPs is highly valuable within the mental health field. Within both the NH administrator and social work perspectives, nursing home professionals find progressive education on the dementia trajectory is important for family CPs. Mental health professionals need to be equipped to guide families, because the grieving process begins when the PLWD loses ability to self-represent their needs, thoughts and feelings. My contribution to the project has advanced education within dementia, grief and loss. I learned in order to assist underrepresented communities we first need to understand the perspectives within them in order to gain a bigger understanding to helping those that need it in the future.