A video intervention to improve decision making in early onset dementia caregivers (CVI)

• Principal Investigators: Bradford Dickerson, MD, Angelo Volandes, MD
• Sponsors: National Institutes of Health (NIH)
• Conditions Studied: Caregivers of patients with Frontotemporal Dementia or other related disorders

Medical decision-making needs for patients and caregivers with dementia are complex. In addition, discussions between doctors and caregivers about medical care can be inadequate. Discussions often rely on discussions of future health states which can be hard for caregivers to picture.  In addition, the information provided is often inconsistent and may not include print materials or other high-quality information that can educate caregivers about the scenarios.

To address these shortcomings, we have developed educational videos regarding stages of dementia and advanced care planning. However, we don’t know which videos are optimal for caregivers of patients in different stages of dementia, whether there are particular characteristics that would help in personalizing the delivery of this information, and how to train doctors in the community to use these tools.

The overall objective of this study is to collect information from caregivers about how to improve our tools to make them more useful when working with caregivers of patients who are in the different stages of dementia (mild, moderate and severe), and how clinicians can best determine the optimal time and method for delivery of this care planning information.

This study involves a single visit that will take a maximum of four hours to complete. This study also includes a survey that you will fill out before coming to the study session. This survey should take no longer than one hour.

Part 1: Pre-Surveys:

• Verbal or Electronic Consent
• Complete surveys asking questions about yourself and the person you care for
• Takes approximately 1 hour

Part 2: In-Person or Virtual Focus Group Session:

• Written or Electronic Consent
• Watch videos about healthcare decisions Complete a survey about each video
• Discuss your opinions about the videos with other focus group members

If you are interested in learning more about this research study, please contact Inola Howe (iahowe@mgh.harvard.edu)