FTD Support Forum: The purpose of this forum is to provide a place for safe and secure communications for people who have been diagnosed with FTD and those who care for loved ones with FTD.

Alzheimer’s Association: The Alzheimer's Association is the leading, global voluntary health organization in Alzheimer care and support, and the largest private, nonprofit funder of Alzheimer research.

The Association for Frontal Temporal Dementia:  The Association for Frontotemporal Degeneration is the place to turn for accurate information, compassion and hope when lives are touched by frontotemporal degeneration. FTD, also called frontotemporal dementia or frontotemporal lobar degeneration (FTLD), is a disease process that causes a group of brain disorders characterized by changes in behavior and personality, language and/or motor skills, and a deterioration in a person’s ability to function.

There are over 25 different types of dementia.  Jill’s diagnosis is uncertain at this point with frontal temporal dementia (FTD) and early onset Alzheimer’s Disease (EOAD) being the most likely candidates.  Only an autopsy provides certainty in diagnosis.  In terms of treatment and outcome there is little substantive difference.

We have taken a circuitous route to diagnosis.  I first noticed Jill’s memory loss and disorientation during our family trip to England, Christmas of 2006.   There were several small slips and miscues that both I and the boys noticed.  As these incidents increased in frequency and severity, I suggested that Jill go to our family doctor.  This began a journey that brought us from a “normal middle aged forgetfulness” to a neurologist, an MRI, and our first neuropsychological in the early fall of 2008.  We were told that Jill had “dementia syndrome of depression” or “pseudodementia.”  This diagnosis suggested that her cognitive slips were a result of a depression and previously undiagnosed attentional concerns and anxiety.  Relieved but unconvinced we embarked on a round of therapy and medication.  As her situation continued to deteriorate and as she experienced significant difficulties in her role as teacher, we continued to search for answers.  We consulted a second neurologist and had a second neuropsychological completed.  These answers were less hopeful, but more consistent with what I was observing with FTD as the diagnosis.  With this round of testing we applied for and Jill was granted long-term disability leave in August 2009.  In February 2010, Jill was given a PET scan which confirmed the organic nature of the disease and suggested EOAD as a probable diagnosis.  A third round of neuropsychological testing in June 2010, suggested probable EOAD or FTD with a moderate decline noted.  I am uncertain that we will pursue additional testing.  Jill’s continuing decline is evident.  The burden of testing provides little utility in terms of treatment course. 

Below you will find some links that have been helpful to me.  I have also referenced several useful books.  These are not exhaustive lists by any means.

Barry Peterson & Jan’s Story:  CBS correspondent Barry Peterson’s story about his wife, Jan who was diagnosed at age 55 with early onset Alzheimer’s Disease. 

Useful Dementia Links

What if It’s Not Alzheimer’s? A Caregiver’s Guide to Dementia.  edited by Lisa Radin and Gary Radin.  A useful overview of compendium of information on frontal temporal dementia.  The go to book for this disease.

Still Alice by Lisa Genova.  Fictional account of a young psychologist who is afflicted with Early Onset Alzheimer’s Disease.  A useful insight into a difficult disease.

Jan's Story: Love lost to the long goodbye of Alzheimer's by Barry Peterson.  The story of Jan’s disease and Barry’s response. 

Inside Alzheimer's: How to Hear and Honor Connections with a Person who has Dementia by Nancy Pierce.  A treatise on responding to persons with dementia.

Strange Relation: A Memoir of Marriage, Dementia, and Poetry,  By Rachel Hadas.  A lovely reflection of a poet’s journey through a spouse with this FTD.  Very helpful to me.

Books

LA Times Story on FTD:  Story and videos.  Videos are particularly touching.