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Project Type - Pilot Projects

Social, Legal, and Financial Consequences of Frontotemporal Dementia

Northern America


This study identifies and evaluates legal, financial, and social decisions made following a diagnosis of (Frontotemporal dementia) FTD. Using qualitative methods, investigators will collect and characterize the financial, legal, and social decisions patients and their families make post-diagnosis. Investigators will conduct semi-structured interviews with family members of patients with FTD at two time points.

Project Details

The first interview, within thirty-days of the diagnosis, collects participants’ reports of anticipated decisions and experienced barriers early in the disease process.

The second interview, within six to nine months following the diagnosis, will collect participants’ reports of decisions made, barriers to decision-making, and experience with civil or criminal liability due to behavioral symptoms that violate social norms.

This descriptive data will provide the groundwork for future studies that develop policy and clinical practice solutions to barriers that interfere with patient and families access to resources critical to patient outcomes.