Sunday's New York Times lead article on page one is titled "When Illness Makes a Spouse a Stranger" and it continues for four computer pages to describe a family devastated by fronto-temporal dementia.Identified as "a group of brain diseases that eat away at personality and language," and sometimes called Pick's disease, researchers differentiate the diseases from Alzheimer's disease because it attacks personality and language before it significantly effects other memory tasks and consistently is diagnosed among younger people. The anguish for the caregiver is the same, however, no matter which form of dementia is diagnosed.
The positive part of the long article describes progress being made in identifying abnormal protein buildup in the brain and in developing treatments for that particular defect.Most frontotemporal dementia is not inherited and most patients receive up to four misdiagnoses before this form of dementia is decided upon. When relatives of people with this form of dementia question themselves about the history of onset, they begin to think the disease was present even 10 years before the first symptoms appear that bring the person to the attention of a neurologist.
People who have developed FTD often have a history of job loss, of losing the ability "to read the tealeaves" of recognizing subtle interpersonal cues in business, or of making really bad decisions with investments, often losing the family's hard-earned savings.
When the effected person's personality changes and his or her level of skills or behavior become too burdensome for the caregiving spouse or family member, residential care facilities are needed to care for these mostly silent sometimes sweet, sometimes hostile shells of the folks they once were.
Hopefully some of the new science will result in prevention or treatment options which will help our children or grandchildren's generation provide better answers. For us now, the message is clear.You are not alone; support is available, ask for help.