5000 and Counting – FTD Forum Passes Milestone

Posted on Monday, March 4th, 2013

The FTD Support Forum (http://ftdsupportforum.com) has just registered its 5,000th new member worldwide since being established in January, 2008.

This online support forum provides safe and secure communications for people who have been diagnosed with Frontotemporal Dementia and those who care for loved ones with FTD. Its members are dedicated to supporting one another in a sensitive, respectful and sincere manner. Over the years, the FTD Support Forum has become a large international virtual family, a place to find others who truly understand the the difficult FTD journey and who can share experiences, tips, and even humor at times.

Frontotemporal Dementia, also known as Frontotemporal Degeneration, is a little known, early-age onset, incurable neuro-degenerative brain disease.  It often begins earlier than Alzheimer’s Disease with an average age of onset in the 50s and 60s, a full 10 years before the average Alzheimer’s patient is diagnosed.

The outcome for people with FTD is poor. The neurological disorder progresses steadily and often rapidly, ranging from less than 2 years in some individuals to more than 10 years in others. Eventually some individuals with FTD will need 24-hour care and monitoring at home or in an institutionalized care setting.

FTD is difficult to diagnose and many new members arrive in the FTD Support Forum with a host of problems – behavioral, financial, legal, matrimonial, incontinence, feeding, nursing and even police involvement, for which they get experienced and sympathetic understanding and advice from other forum members.

The Frontotemporal Dementia Support Forum also encourages increased awareness of FTD within the medical, nursing and other caring professions and the general public, with the belief that knowledge will bring improved access to support networks that are emerging on the internet and elsewhere.

As many as seven million Americans may be afflicted with some form of dementia. (FCA) Newly analyzed data from the Health and Retirement Survey (HRS) indicates that there may be as many as a half a million Americans under age 65 who have dementia or a cognitive impairment at a level of severity consistent with dementia. Combining this with data from other studies, the Alzheimer’s Association calculates that there are between 220,000 and 640,000 people with early onset dementia and other related dementias in the U.S. today.

Worldwide the statistics are alarming. Worldwide, 35.6 million people have dementia and there are 7.7 million new cases every year.(WHO) FTD is frequently misdiagnosed, and un-diagnosed, so estimates will certainly be higher.

For information about the support forum please visit our site: http://ftdsupportforum.com For further information about FTD, you can contact the following related sites: http://ftdsupport.com/ www.theaftd.org/ www.memory.ucsf.edu/ftd/ http://www.mayoclinic.com/health/fro…mentia/DS00874 www.ninds.nih.gov/disorders/picks/picks.htm www.ftdsg.org

In the US, contact Lea Hood [email protected] or Linda Smith at [email protected].