Economic Burden Survey – Costs in Last 12 Months (PSP and CBD)

This email may be of interest to those who are currently caring for someone with PSP or CBD, or have cared for someone in the last 12 months.

The AFTD (Association for Frontotemporal Degeneration) launched an economic burden survey last week and they already have over 400 respondents.  Most of the respondents are from the “traditional” FTD community, which is the behavioral variant of FTD (frontotemporal dementia).  The AFTD has sent out a call for PSP and CBD caregivers to participate since “all forms of FTD present significant social and economic challenges.”

One of the US’s top researchers into the “economic burden of care” has put together this survey of the financial costs of all variants of FTD, including PSP and CBD.  The survey – which takes 45-60 minutes to complete – asks about medical, care, and legal costs within the last 12 months.  Only estimates are needed!  (Don’t start digging for receipts and bills!)  The AFTD intends to use the results to advocate for better services and secure additional research funding.

The economic burden survey is here:

The survey website says:

“Most of the questions about expenses and financial challenges will ask you to recall information over the past 12 months.  While there may have been significant expenses or challenges that occurred prior to this, we want to provide a common frame of references for everyone that answers the survey. You do not need to find receipts or expense reports to answer the questions. Instead we ask that you make your most educated guess about the cost.”

“The survey should take about 45-60 minutes to complete. If you need to take a break, you can come back to complete the survey by clicking on the same link for up to 24 hours. If for some reason, you cannot make it back within 24 hours, you will have to start a new survey. There is a bar at the bottom of the page to show your progress.”

If you can share your experience with the researcher, thanks!  If you have questions about the survey, call the AFTD’s HelpLine at 866-507-7222.