About FTD Caregiving

FTD Caregiving is a nonprofit organization compiling a knowledge base of practical caregiving strategies and ideas for those faced with the daily challenges of caring for someone afflicted with a frontotemporal dementia (FTD). When my wife of 30 years began to experience occasional language difficulties at the age of 50, I was totally unprepared for the many challenges that her disease would bring over the next 12 years.

After about 4 years of seeing various physicians and specialists about my wife's progressively deteriorating language problem, we finally received a tentative diagnosis of primary progressive aphasia in 2002. Since I had a medical research background, by then I had already extensively researched medical journals and books and reached with a deep sense of dread a similar conclusion about the reason for my wife's problem. Still, the shock from hearing the words brought on a sense of numbness and hopelessness in me that I still vividly remember today.

As emotionally devastating as it was for me to hear the diagnosis of primary progressive aphasia, little did I know at the time that this was just the beginning of a nine year ordeal for her and a very emotionally and physically challenging journey for me and our family. In the following years, I would often feel overwhelmed by the uncertainties and continual unexpected caregiving challenges brought on by the disease. My frustrations were compounded by being unable to find practical caregiving advice and knowledge for FTD in general.

From my experience of caring for my wife and in communicating with others who have cared for someone with a frontotemporal dementia, it is evident that to fully understand the extent of the challenges associated with caring for someone with the disease, one needs to have the first-hand experience of caring for someone with it over an extended period. Without this experience, one cannot truly appreciate the unique and overwhelming nature of the caregiving demands brought on by the disease and the accompanying sense of helplessness that can often envelop the caregiver.

After caring for my wife for more than 12 years, through FTD Caregiving I want to share with others who are facing a similar journey of caring for a loved one with a FTD the caregiving knowledge and experiences I've gained and provide the platform for other former and current caregivers of FTD patients to do the same.

Robert Wang