Care Partner Confidence and Experiences in Legal Planning for People Living With Dementia: A Mixed-Methods Study.

Abstract

Care partners of persons living with dementia perform complex legal planning tasks. The purpose of this study was to survey care partners in the United States to understand their confidence and experience in performing legal planning tasks. This study used a parallel mixed-methods research design. We administered a web-based survey to 318 adults who self-identified as care partners of persons living with dementia. The survey contained Likert scale questions and open-ended questions about legal planning tasks. Multivariate linear regression was used to analyze quantitative data and inductive thematic analysis was used to analyze qualitative data. Care partners were, on average, 53 years of age and 78% female. The three topics in which participants were least confident were: protecting oneself legally as a care partner; options when legal documents are not in place and a family member is not legally competent; and circumstances when legal documents should be updated or renewed. We observed significant differences in legal planning confidence between newer and more experienced care partners (p < .001); lower- and higher-income care partners (p = .01); and adult child versus spousal care partners (p < .001). Thematic analysis revealed that legal planning challenges include initiating a conversation with the person living with dementia, understanding and using legal materials, and accessing materials that accommodate individual differences. It is vital to develop legal planning interventions that are tailored to specific subgroups of care partners, and to maximize the clarity, comprehensiveness, and accessibility of available legal planning education.