“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

Article type: Research Article

Authors: Harrison, Krista L.^{a; b; c; *} | Garrett, Sarah B.^b | Halim, Madina^a | Bernstein Sideman, Alissa^{b; c; d} | Allison, Theresa A.^{a; e; f} | Dohan, Daniel^{b; d} | Naasan, Georges^g | Miller, Bruce L.^{c; h} | Smith, Alexander K.^{a; e} | Ritchie, Christine S.^{a; i}

Affiliations: [a] Division of Geriatrics, University of California, San Francisco, San Francisco, CA, USA | [b] Philip R. Lee Institute for Health Policy Studies, University of California, San Francisco, CA, USA | [c] Global Brain Health Institute, University of California, San Francisco, CA, USA | [d] Department of Humanities and Social Sciences, University of California San Francisco, San Francisco, CA, USA | [e] San Francisco Veterans Affairs Health Care System, San Francisco, CA, USA | [f] Department of Family & Community Medicine, University of California, San Francisco, San Francisco, CA, USA | [g] The Barbara and Maurice Deane Center for Wellness and Cognitive Health, Department of Neurology, Mount Sinai Hospitals, Icahn School of Medicine, New York, NY, USA | [h] Memory and Aging Center, Department of Neurology, Weill Institute for Neurosciences, University of California San Francisco, San Francisco, CA, USA | [i] The Mongan Institute and the Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Boston, MA, USA

Correspondence: [*] Correspondence to: Krista Lyn Harrison, PhD, 490 Illinois Street, Floor 08, UCSF Box 1265, San Francisco, CA 94143, USA. Tel.: +1 415 502 4684; Fax: +1 415 514 0702; E-mail: [email protected].

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.

Keywords: Caregivers, dementia, geriatrics, hospice care, neuropalliative care, palliative care, quality of life

DOI: 10.3233/JAD-220536

Journal: Journal of Alzheimer's Disease, vol. 90, no. 3, pp. 1301-1320, 2022