“I Didn’t Sign Up for This”: Perspectives from Persons Living with Dementia and Care Partners on Challenges, Supports, and Opportunities to Add Geriatric Neuropalliative Care to Dementia Specialty Care

Abstract

Background: In the United States, dementia specialty centers affiliated with centers of excellence for research hold promise as locations to develop innovative, holistic care in care systems otherwise siloed by discipline or payer. Objective: We conducted foundational research to inform development of patient-and family-centered palliative care interventions for dementia specialty centers. Methods: We interviewed persons living with dementia (PLWD), current, and former care partners (CP) recruited from a specialty dementia clinic and purposively selected for variation across disease syndrome and stage. A framework method of thematic analysis included coding, analytic matrices, and pattern mapping. Results: 40 participants included 9 PLWD, 16 current CPs, and 15 former CPs of decedents; 48% impacted by Alzheimer’s disease dementia. While help from family, support groups and adult day centers, paid caregiving, and sensitive clinical care were invaluable to PLWD, CPs, or both, these supports were insufficient to navigate the extensive challenges. Disease-oriented sources of distress included symptoms, functional impairment and falls, uncertainty and loss, and inaccessible care. Social and relational challenges included constrained personal and professional opportunities. The obligation and toll of giving or receiving caregiving were challenging. Clinical care challenges for PLWD and/or CPs included care fragmentation, insufficient guidance to inform planning and need for expert interdisciplinary clinical care at home. Conclusion: Findings highlight the breadth and gravity of gaps, which surpass the disciplinary focus of either behavioral neurology or palliative care alone. Results can inform the development of novel interventions to add principles of geriatrics and neuropalliative care to dementia care.

Care Setting Transitions for People With Dementia: Qualitative Perspectives of Current and Former Care Partners

“…Limited research has demonstrated that PWD and CPs receive suboptimal anticipatory guidance related to prognosis and planning. 15,20…”

“…21 A summary of the study in the COREQ framework has been previously published as part of the original study. 15,20…”

“…19 Study data were semi-structured interviews with CPs of people with dementia conducted between November 2018 and July 2019. 15,20 The interview guide, developed by an interdisciplinary team of experts in geriatrics, neurology, and palliative care, included questions about disease course, future expectations, and interactions with medical providers in caring for the PWD. This study was approved by the institutional review board and follows guidance of the Consolidated Criteria for Reporting Qualitative Studies (COREQ).…”

“…Demographics for the sample have been previously described. 15,20 Current CPs were caring for patients with an average MMSE score of 17.4, indicating moderate dementia, available for 13/16 patients; 56% of PWD had a diagnosis of Alzheimer's documented in the electronic health record (EHR) before recruitment. Among former CPs, 33% of their PWD had an Alzheimer's diagnosis documented in the EHR and interviews were on average conducted eight months after the death of the PWD (range 3-12 months).…”

Functional and clinical needs of older hospice enrollees with coexisting dementia

“…Yet the Medicare Hospice Benefit, which provides care to 52% of decedents in the United States in 2019, 2 was not designed for people with dementia (PWD) and their care communities. 3 Common needs among PWD include help managing behavioral symptoms of dementia, pain, breathing problems, disability and falls, and caregiver burden [3][4][5][6] ; these could be insufficiently addressed if hospice processes developed for cancer are followed. Most research on end-of-life care for PWD has focused on hospice recipients who have dementia as principal diagnosis and indication for hospice care.…”