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Frontotemporal Dementia: Military Exposures and Disease Characteristics (FTD-MEDIC)

Led by Post-Doc Jamie Mayo, PhD, RN

Frontotemporal dementia (FTD) is a group of disorders that occur when there is a loss of nerve cells in two areas of the brain called the frontal and temporal lobes. This can affect behavior, personality, language, and movement. FTD affects approximately 60,000 people in the United States. It is the most common type of dementia that occurs before 65 years of age.

FTD is a complex condition and depending on the cause and the area of the brain being affected, its symptoms can vary greatly from person to person. Because of this, it is hard to differentiate FTD from other dementias such as Alzheimer’s and psychiatric disorders. Identifying the subgroups, or different kinds, of FTD and their symptoms is very important in correct diagnosis and management of these disorders. Although FTD is not life threatening, it can be a very heavy load to bear for both patients and caregivers.

Post-9/11 United States war Veterans often have brain injury and diseases such as heart disease and diabetes that increase risk for dementia. As they age, it is estimated that dementias (FTD, Alzheimer’s and its related dementias) will start to occur even more often. This could greatly increase the burden on patients and families, in addition to increasing the care burden for dementia in the Department of Defense and Department of Veterans Affairs healthcare systems. To date, no study has directly and effectively evaluated the occurrence of dementia and its subtypes in Post-9/11 Veterans nor its associated risk due to military-specific exposures. Because of this, it is important to study the occurrence of FTD and its clinical characteristics frequently seen among Veterans.

In this study, we will use existing records from the Department of Defense and Department of Veterans Affairs to study FTD in post-9/11 US Veterans. This study will first identify people with FTD using diagnoses from clinical care. Then, we will review health records such as clinical notes and reports. These will be used to identify symptoms related to FTD, describe how often FTD occurs in this population, and describe FTD subgroups. By matching each person with FTD to four other Veterans of similar age and sex in the same population but with no diagnosis of FTD or other dementias, it is possible to see if injury to the brain or spinal cord, or blast exposure risk differs between those with and without FTD, or different among the subgroups of FTD.

Treatment for FTD is mostly based on symptoms. Knowing the clinical types of FTD that are frequent in Veterans and those that may be at risk for FTD can guide clinicians in diagnosis and management. These finding will also help VA/DoD plan for health care resources and treatment programs that will be needed in the future. The computer programming tool that is currently used on VA data to identify memory loss and other activities of daily living will be improved so that it can identify FTD symptoms. This enhanced tool can be tested in a future study and can then help identify FTD disease characteristics and its subtypes among those that have exposures that are at increased risk for FTD or among those with early memory or behavior problems. This will aid in diagnosis of FTD at earlier stages of disease.