Community Impact

Public awareness of FTD is shamefully scant. While there are approximately 500,000 documented cases of FTD across the United States, most people with FTD never make it to the doctor’s office. The majority of families take their loved ones to counselors or religious leaders. Others leave their loved ones wholesale, unaware that a disease underlies their emotional distance.

Even in 2006, it is the rare person who makes the connection between personality change and brain disease. Still laboring under the influence of Freud, we believe that if a person’s behavior radically changes, he or she must be in the midst of a deep psychological crisis—one that, with enough willpower, insight, and coaching, can be overcome.

Those who do manage to see a physician are routinely misdiagnosed with depression, ‘mid-life crisis,’ or Alzheimer’s Disease, prompting a cascade of inappropriate prescription drugs. The average time to reach an accurate diagnosis is three years, during which time families are confused, alienated, and financially bankrupt.

FTD strikes in the prime of life. Many people are at the height of their career and still have children at home. People with FTD inevitably lose their jobs. The healthy spouse struggles to hold things together, caring for children who are often still in the home and finding work to support the family. Not only does the healthy spouse have to deal with new financial realities and daily family crises, they have a whole new fight on their hands—the struggle to get a proper diagnosis. After arduous research, some persistent and resourceful families manage to get referred to specialists. Even then, long-term disability insurance often refuses to consider the cases, board and care facilities and nursing homes deny admission to patients who are younger, stronger, and more active than the typical Alzheimer’s dementia patient. In order to get treatment and proper health care, some families have been instructed to take their loved ones to emergency rooms and leave them there.

By reaching a national audience, this project will have a tremendous impact on the general awareness of FTD. We suspect that this program will see a significant jump in reported FTD cases.