"My advice to any caregiver who is going to have to go through this is that if you're not a patient person, you'd better become one," she says. "That's the only thing that will get you through it.

"On top of all of the emotional trauma of losing a loved one to dementia, the lack of judgment associated with FTD means that caregivers must make sure the environment is safe. Because of their tendency to walk long distances, FTD patients need to remain in a secured environment, notes Barbara Cavanaugh, R.N., assistant director of nursing at the French Center. Given the tendency of FTD patients to put food and other items in their mouths, she adds, caregivers must go as far as baby-proofing the home to prevent choking hazards, as well as providing healthy finger foods to meet the often insatiable appetite needs of many of these individuals.

Communication strategies can be equally challenging. For patients who have lost the ability to speak, caregivers must pay close attention to body language and subtle nuances in facial expressions. "An astute caregiver will be able to cell when something's different," says Cavanaugh.

She recalls a mute French Center patient whose clenched fist was a sign she was becoming agitated. "Our staff got very good at picking up on that," she says.

Mosqueda acknowledges that it can be extremely difficult for spouses and other family members to remain calm, particularly in the face of a loved one who is behaving inappropriately.

"People will say, 'Why is my father making sexual advances at me? Why is he saying these things?" We try to educate families that these behaviors are the result of a disease, and that it's not the 'real person' coming our." says Mosqueda. "But it's very difficult, and many families experience a lot of feelings of guilt and shame." In a lot of ways, Mosqueda notes, frontotemporal dementia is more distressing for the family caregiver than for the patient. "We need to make sure we're doing everything we can for the quality of life of the caregiver, even as we're working with him or her on how best to take care of the patient," she says.

For two of the people attending Alzheimer's support groups run by the Orange County Alzheimer's Association, the stories told by family members didn't resonate. "The symptoms they were talking about were so different from what I had experienced with my husband," says Dunaway. For Price, it was the same.

It was 1993, a time when far less was known about FTD, or Pick's disease, as it was more commonly referred to at the time. But Kim Bailey, program director of the Orange County Alzheimer's Association, had noticed that the spouses of Pick's disease patients seemed to have very different care giving issues than the spouses of Alzheimer's patients. So she started a separate group just for Pick's caregivers, one of the first anywhere to deal with the unique concerns of these individuals.

"I wasn't able to offer them specific strategies because there was so little that we knew about the disease at that point," Bailey says. "I acted more as a facilitator, letting them share their feelings about the disease and coping techniques that they had found to be effective. They were really paving new ground. "Many of the members of the original group continue to meet, and Bailey is forming a second group for new members, co- sponsored with the University of California, Irvine.

"Dementia is always hard on the spouse, but frontotemporal dementia is particularly hard because It tends to affect younger individuals, people who may have dependent children or be the family's sole breadwinner," Bailey notes. "In addition, when your spouse is rapidly losing the ability to communicate, it can be very lonely and isolating." 

On top of all of the obvious hardships they endure, the caregivers in Bailey's support group are bothered by the fact that so few people are aware of the disease. "It's very hard for these caregivers, because they feel their loved ones have a distinct form of dementia, yet when they're in public they have to explain it as Alzheimer's disease because that's the one people understand," Bailey says. "That really irritates them. They're anxious for people to know the differences between Alzheimer's and frontotemporal dementia."