Providing Care for a Person with a Frontotemporal Disorder

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 and income, poor health, and decisions about long-term care and end of life.

How Frontotemporal Disorders Affect Families

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.

How FTD Can Affect Work

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. An employment attorney can offer information and advice about employee benefits, family leave, and disability if needed.

Workers diagnosed with any frontotemporal disorder can qualify quickly for Social Security disability benefits through the “compassionate allowances” program (or call 1-800-772-1213).

FTD Caregiver Health and Support

Caring for someone with a frontotemporal disorder can be very hard, both physically and emotionally. Many caregivers face declines in their own health. To stay healthy, caregivers can:

  • 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.

Long-Term Care for People with FTD

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.

End-of-Life Care for a Person with FTD

People with frontotemporal disorders typically live six to eight 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, living 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.

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.