New Tool Supports Dementia Caregivers in Transition Planning

This study developed and tested a decision support tool called PATH (Preparation for Appropriate Transitions from Home) to assist caregivers of persons living with dementia (PLwD) in planning for potential transitions from home to senior living communities (SLCs), such as nursing homes or assisted living facilities. The researchers aimed to address both the cognitive and emotional challenges of decision-making, as well as provide educational resources.

Decisions about transitioning PLwD to SLCs are often made during crises and can be emotionally taxing for caregivers. These transitions can improve caregiver well-being but also cause guilt and anxiety. Tools to guide caregivers in making these decisions are scarce. By supporting both the emotional and practical aspects of decision-making, PATH aims to help caregivers navigate this complex process and plan proactively, potentially reducing stress and improving outcomes for both caregivers and PLwD.

The researchers developed PATH through focus groups with caregivers and consultations with an expert panel specializing in geriatrics, dementia care, and bioethics. The tool was refined through cognitive interviews with 53 caregivers who evaluated its clarity, trustworthiness, and usability. Participants were recruited from caregiver support groups, a geriatric clinic, and a dementia research center.

PATH consists of two booklets. The first addresses the emotional aspectsof decision-making, such as guilt and conflicts between a PLwD's preferences and their safety. The second provides educational content, including information about SLCs, costs, legal considerations, and contingency planning. Over 95% of caregivers rated the tool as clear, trustworthy, and easy to understand. At least 80% reported feeling more comfortable discussing transitions and expressed a desire to learn more.

PATH fills an unmet need for a resource that supports caregivers in planning transitions for PLwD. By addressing emotional challenges and providing practical guidance, the tool helps caregivers feel more prepared and less burdened when making these difficult decisions. Its potential to improve caregiver well-being and decision quality highlights its relevance for health care providers and policymakers focused on dementia care.

Future research should evaluate PATH’s effectiveness across diverse caregiver populations with varying educational backgrounds. Additional development, such as creating a web-based version with multimedia resources, could enhance accessibility and provide more tailored information. Further exploration of how caregiver well-being should be considered in decision-making frameworks is also needed.

This research was supported by the Humana Foundation and the National Institutes of Health/National Institute on Aging (award P30 AG021342). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Yale University also provided funding and support for this research.