Development and Feasibility of PATH: Preparation for Appropriate Transitions From Home

Despite efforts to promote aging in place, millions of caregivers face decisions about whether a person living with dementia (PLwD) should move from home to another residential setting, such as a nursing home or assisted living facility. These decisions are frequently made during times of crisis, and caregivers report many unmet needs regarding decision making. Tools to support this decision making are lacking.

Focus groups of caregivers and an expert panel provided the content for a decision support tool. The tool was then iteratively reviewed with a new cohort of 53 caregivers, who participated in cognitive interviews and rated the tool's clarity, trustworthiness, and whether it made them more comfortable thinking about care transitions.

In focus groups, caregivers highlighted the importance of understanding decision making in the context of the entire relationship between the caregiver and PLwD, and they repeatedly called attention to the role of guilt. The expert panel grappled with the ethical standing of the caregiver's well-being in decision making on behalf of the PLwD. The tool consists of two booklets. The first addresses the cognitive and emotional aspects of decision making and the second provides education. Over 95% of caregivers gave a rating of "Good" or "Very Good" for the booklets' clarity, ease of understanding, and trustworthiness. At least 80% agreed or strongly agreed that they were comfortable thinking about the issues and wanted to learn more.

A decision support tool for caregivers of PLwD that provides education about transitions in care site, along with support for the emotional aspects of decision making, is highly acceptable and supports caregivers' ability to engage with what can be a challenging topic.