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. 2024 Jul 1;64(7):gnad153.
doi: 10.1093/geront/gnad153.

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

Anna Jolliff  1 , Beth Fields  2 , Justin Boutilier  3 , Alex Dudek  3 , Christian Elliott  4 , Matthew Zuraw  4 , Nicole E Werner  1
Affiliations

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

Anna Jolliff et al. Gerontologist. .

Abstract

Background and objectives: 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.

Research design and methods: 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.

Results: 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.

Discussion and implications: 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.

Keywords: Advance care planning; Alzheimer’s disease; Caregiving—informal; Law.

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Conflict of interest statement

C. Elliott is the CEO and Founder of Whiplash Technology and developed CareVirtue. M. Zuraw is the Caregiver Support Officer for Whiplash Technology and supported development of CareVirtue. M. Zuraw is also an Associate for HFC, which is a 501c3 with the mission of Bringing Light to Alzheimer’s, and is a member of the Alzheimer’s Impact Movement, which is an advocacy affiliate of the Alzheimer’s Association.

Figures

Figure 1.
Figure 1.
Legal topics with the highest average confidence.
Figure 2.
Figure 2.
Legal topics with the lowest average confidence.
See this image and copyright information in PMC

References

    1. Adams, K. B., & Sanders, S. (2004). Alzheimer’s caregiver differences in experience of loss, grief reactions and depressive symptoms across stage of disease: A mixed-method analysis. Dementia, 3(2), 195–210. 10.1177/1471301204042337 - DOI
    1. Administration for Community Living (2022, September 1). 2022 national strategy to support family caregivers. http://acl.gov/CaregiverStrategy
    1. Alzheimer’s Association (2023a). Caregiving. https://www.alz.org/help-support/caregiving
    1. Alzheimer’s Association (2023b). Planning ahead for legal matters. https://www.alz.org/help-support/caregiving/financial-legal-planning/pla...
    1. Alzheimer’s Association (2023c). Stages of Alzheimer’s. https://www.alz.org/alzheimers-dementia/stages

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