Being a caregiver of a person with dementia, regardless of whether it's Alzheimer's disease, FTD or another type, can be physically and emotionally exhausting. However, frontotemporal dementia can often be even harder on families because:

• The personality changes and behaviors are very distressing
• The diagnosis is often delayed because FTD can be mistaken for other conditions
• There is not as much public awareness about the disease and, therefore, not as many resources
• Patients affected with FTD are usually younger than those affected by Alzheimer's
• Language problems develop earlier, making communication more difficult

If you live in the San Francisco Bay Area, the UCSF Memory and Aging Center holds a free monthly FTD Support Group for family members or caregivers. At the same time is a a free monthly support group called Memories in the Making® for people with FTD. We also offer a support group for the adult children of people with FTD.

One of the biggest challenges for caregivers is finding the time and energy to take care of your own health. It is important that you attend support groups, talk with friends, get exercise and plenty of sleep, eat well and participate in other activities to help maintain a balance. Taking care of yourself will allow you to provide better care for your loved one. Also, you may need to learn to accept help when it’s offered and ask for help when it’s needed.

As the primary caregiver, friends and family will look to you for information and guidance. Learning about FTD will help you to answer some of their questions, but you may need a different way to explain it to children. Furthermore, family dynamics can change with a serious illness. Being prepared for different reactions will help you avoid destructive cycles.