Use of Telephone- and Internet-Based Support to Elicit and Address Financial Abuse and Mismanagement in Dementia: Experiences from the Care Ecosystem Study

Abstract

Background: Financial mismanagement and abuse in dementia have serious consequences for patients and their families. Vulnerability to these outcomes reflects both patient and contextual factors.

Objective: Our study aimed to assess how multidisciplinary care coordination programs assist families in addressing psychosocial vulnerabilities and accessing needed resources.

Methods: Our study was embedded in a clinical trial of the Care Ecosystem, a telephone- and internet-based supportive care intervention for patients with dementia and caregivers. This program is built around the role of the Care Team Navigator (CTN), an unlicensed dementia care guide who serves as the patient and caregiver's primary point of contact, screening for common problems and providing support. We conducted a qualitative analysis of case summaries from a subset of 19 patient/caregiver dyads identified as having increased risk for financial mismanagement and abuse, to examine how Care Ecosystem staff identified vulnerabilities and provided support to patients and families.

Results: CTNs elicited patient and caregiver needs using templated conversations to address common financial and legal planning issues in dementia. Sources of financial vulnerability included changes in patients' behavior, caregiver burden, intrafamily tension, and confusion about resources to facilitate end-of-life planning. The Care Ecosystem staff's rapport with their dyads helped them address these issues by providing emotional support, information on how to access financial, medical, and legal resources, and improving intra-familial communication.

Conclusion: The Care Ecosystem offers a scalable way to address vulnerabilities to financial mismanagement and abuse in patients and caregivers through coordinated care by unlicensed care guides supported by a multidisciplinary team.

Keywords: Care navigation; caregivers; dementia; financial management.

Figure 1:

Conceptual model of relationships among financial activity, mismanagement and abuse in dementia. For many people with dementia, continued financial activities are central to their self-conceptions and sense of independence but can expose them to risk of financial mismanagement; finances can also be mismanaged by well-intentioned people acting on their behalf. Financial abuse takes different forms. Some perpetrators of financial abuse take advantage of cognitive deficits of people with dementia to lead them to act contrary to their own interests, so these are also instances of financial mismanagement. Other perpetrators capitalize on situational rather than cognitive vulnerabilities—e.g., by coercing dependent people with dementia into signing documents or acting without their knowledge in violating a fiduciary duty—so these cases of financial abuse do not represent financial mismanagement.

Figure 2:

Flow chart for quantitative and qualitative methods and analysis

Figure 3

Gray bars indicate care recipients who had not participated in the financial activity prior to disease onset.