In addition to managing the medical and day-to-day care of people with frontotemporal disorders, caregivers can face a host of other challenges. These challenges may include changing family relationships, loss of work, poor health, decisions about long-term care, and end-of-life concerns.
People with frontotemporal disorders and their families often must cope with changing relationships, especially as symptoms get worse. For example, the wife of a man with bvFTD not only becomes her husband’s caregiver, but takes on household responsibilities he can no longer perform. Children may suffer the gradual “loss” of a parent at a critical time in their lives. The symptoms of bvFTD often embarrass family members and alienate friends. Life at home can become very stressful.
After Justin graduated from college, he went home to live with his parents for a short time. It didn’t take long to notice personality changes in his 50-year-old mother, a successful executive. She became more childlike and had trouble finishing household chores. By the time she was diagnosed with bvFTD, Justin’s relationship with his mother had deteriorated. Learning about the disorder helped Justin understand and accept the changes he was seeing in his mother.
Frontotemporal disorders disrupt basic work skills, such as organizing, planning, and following through on tasks. Activities that were easy before the illness began might take much longer or become impossible. People lose their jobs because they can no longer perform them. As a result, the caregiver might need to take a second job to make ends meet—or reduce hours or even quit work to provide care and run the household.
Workers diagnosed with bvFTD, Pick’s disease, PPA, or ALS can qualify quickly for Social Security disability benefits through the “compassionate allowance” program. For more information, see www.socialsecurity.gov/compassionateallowances  or call 1-800-772-1213.
Caregiver Health and Support
Caring for someone with a frontotemporal disorder can be very hard, both physically and emotionally. To stay healthy, caregivers can do the following:
- Get regular health care.
- Ask family and friends for help with child care, errands, and other tasks.
- Spend time doing enjoyable activities, away from the demands of caregiving. Arrange for respite care—short-term caregiving services that give the regular caregiver a break—or take the person to an adult day care center, a safe, supervised environment for adults with dementia or other disabilities.
- Join a support group for caregivers of people with frontotemporal disorders. Such groups allow caregivers to learn coping strategies and share feelings with others in the same position.
The organizations listed in the Resources section of this booklet can help with information about caregiver services and support.
A stressful disorder
Robert, 60, started humming and whistling throughout the day. Over time, his humming got louder, and he started banging on the table over and over again. Robert’s wife and his boss at work were concerned about this behavior and tried to distract him, but this became stressful for everyone. Robert lost his job. A doctor diagnosed bvFTD and prescribed medication to control his behavior. Robert began to attend an adult day services program, but his behavior was too hard for the staff to manage, and he had to leave the program.
For many caregivers, there comes a point when they can no longer take care of the person with a frontotemporal disorder without help. The caregiving demands are simply too great, perhaps requiring around-the-clock care. As the disease progresses, caregivers may want to get home health care services or look for a residential care facility, such as a group home, assisted living facility, or nursing home. The decision to move the person with a frontotemporal disorder to a care facility can be difficult, but it can also give caregivers peace of mind to know that the person is safe and getting good care.
People with frontotemporal disorders typically live 6 to 8 years with their conditions, sometimes longer, sometimes less. Most people die of problems related to advanced disease. For example, as movement skills decline, a person can have trouble swallowing, leading to aspiration pneumonia, in which food or fluid gets into the lungs and causes infection. People with balance problems may fall and seriously injure themselves.
It is difficult, but important, to plan for the end of life. Legal documents, such as a will and durable powers of attorney for health care and finances, should be created or updated as soon as possible after a diagnosis of bvFTD, PPA, or a related disorder. Early on, many people can understand and participate in legal decisions. But as their illness progresses, it becomes harder to make such decisions.
A physician who knows about frontotemporal disorders can help determine the person’s mental capacity. An attorney who specializes in elder law, disabilities, or estate planning can provide legal advice, prepare documents, and make financial arrangements for the caregiving spouse or partner and dependent children. If necessary, the person’s access to finances can be reduced or eliminated.