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

Area of Science:

• Gerontology
• Caregiver Support
• Dementia Care

Background:

• Millions of caregivers face difficult decisions regarding care transitions for persons living with dementia (PLwD).
• These critical decisions are often made during crises, with caregivers reporting significant unmet needs and a lack of decision-making tools.
• Current support systems inadequately address the complexities of choosing residential care settings for PLwD.

Purpose of the Study:

• To develop and evaluate a decision support tool for caregivers of PLwD.
• To provide emotional and educational support for navigating care transitions.
• To enhance caregiver comfort and engagement in the decision-making process.

Main Methods:

• A decision support tool was created using input from caregiver focus groups and an expert panel.
• The tool underwent iterative review with 53 caregivers through cognitive interviews.
• Caregivers rated the tool's clarity, trustworthiness, and impact on their comfort with care transition decisions.

Main Results:

• Caregivers emphasized the importance of the caregiver-PLwD relationship and the role of guilt in decision-making.
• The tool, comprising two booklets on emotional and educational aspects, received high ratings for clarity, ease of understanding, and trustworthiness (>95%).
• Over 80% of caregivers felt more comfortable discussing care transitions and desired further information.

Conclusions:

• A novel decision support tool effectively addresses both the emotional and educational needs of caregivers for PLwD.
• The tool is highly acceptable to caregivers, enhancing their ability to engage with challenging care transition decisions.
• This resource supports informed decision-making, improving the experience for caregivers and persons living with dementia.