08/22/2013 10:41 am ET Updated Oct 22, 2013

How FTD Hides

You may not have even heard of FTD, or frontotemporal dementia. Recently, it has gained some media attention but rarely gets the attention in the news or in the doctor's office as it should. It is not uncommon for patients seeking a diagnosis to get passed through multiple doctors and get routinely misdiagnosed. My mother has been diagnosed with FTD, and the process of getting to the end result was painful, frustrating, confusing, and in the end devastating. Many times medical professionals drew conclusions about her condition that just didn't seem to match up with what I knew about her and the diagnoses they were making.

One important component of FTD is how early the condition can start. Patients typically present the condition between the ages 45 and 65. People often hear the word dementia and think of someone much older than patients in their 50s or even their 40s. Those who may be concerned with a loved one may not associate the symptoms observed with dementia, let alone FTD. It then becomes difficult for someone to suggest the correct doctor for the person they are concerned about or even discuss the concern with a medical professional.

Once the patient sees a doctor with these concerns, a number of other factors can lead to misdiagnosis and mistreatment. To start, there are a number of treatable dementias such as reaction to medications, nutritional deficiencies, or infections. In the experience of my mother, doctors wanted to approach her conditions as treatable dementia. For instance, a doctor may want to focus on the patient's use of alcohol as the cause for dementia or treat the patient for an infection. The pedestrian conclusion may then move on to Alzheimer's, which has significant overlap with FTD. Key symptoms with FTD that are not associated with Alzheimer's are overeating, loss of sympathy for others, and apathy. Depression is not common with FTD, but because patients tend to be emotionally withdrawn and apathetic, this is a common misdiagnosis. FTD patients also may show symptoms of obsessive compulsion disorder as well as delusions and euphoria which can lead to a misdiagnosis of schizophrenia or bipolar disorder. For medical professionals seeking to understand more about recognizing, treating, and diagnosing FTD, a pdf can be found here.

For those interested in learning more about FTD, the University of California San Francisco Memory and Aging Center provides information and resources. The Blue Field Project was started with UCSF in 2010 to fund research into FTD. Another great source is the Association for Frontotemporal Degeneration, which also raises funds and spreads awareness. You can donate to both the Blue Field Project and to AFTD.

The devastating aspect of FTD is how little information is apparent to people about the disease, and it seems to impact both the medical community and the general public. Yet there is still strength in numbers. Creating awareness for FTD leads to quicker diagnoses and a more comprehensive field of research. The forefront of the battle though is simply knowing that FTD exist. Without the vocabulary and knowledge FTD can hide for many years creating a difficult situation for the patient and their loved ones. Once you know something, you can then do something. Awareness may not be the cure so many desperately desire, but it is a real hope based on knowledge and drive.