As caregivers and family members, you are all very familiar with the challenges of living with the symptoms of FTD. From our online FTD Impact Survey this past summer, caregivers and persons diagnosed told us that altered roles and relationships within the family resonated most strongly with them. We also learned that the loss of a job and income was viewed by persons diagnosed as having significant impact on their lives. As a community, we are aware of the psychological stress of caregiving and a number of research studies have confirmed that the caregiver stress burden in FTD is much higher than in Alzheimer's disease. But, something we don't know is the economic impact of FTD on individuals and families and the healthcare system.

FTD typically affects families when the patient is at the peak of his/her earning potential and career path. Many patients lose their jobs because of FTD symptoms, and spouses become part- or full-time caregivers. A significant number of families have school age children residing at home, while others have young adult children providing caregiver support. Families are faced with high costs due to lost productivity, job loss and direct and indirect medical and non-medical expenses. AFTD wants to better understand these concerns and has recently posted online a request for proposals to carry out an Economic Burden of FTD research study.

An economic burden study will help inform policy makers, research funders and health professionals about the major cost drivers of FTD. Such a study will demonstrate the financial impact of the disease on families and on public programs and will allow us to compare the financial costs of FTD with other neurodegenerative disorders like Alzheimer's disease or Parkinson's disease. Having the facts in hand will lend tangible support to our advocacy efforts and make clear the necessity of allocating resources to effective and efficient treatment options for FTD.