"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 for

SUBMITTER: Harrison KL 

PROVIDER: S-EPMC9712265 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature