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Caring for Loved Ones with Frontotemporal Degeneration

It’s estimated that between 50,000 and 60,000 people in the U.S. suffer from frontotemporal degeneration (FTD). FTD is not a single disease. It covers a range of disorders that affect the frontal and temporal lobes of the brain. If you or a loved one is coping with the early or advancing effects of FTD, you know how difficult it can be. We invited a Banner Health expert to share her insights on this widespread, yet relatively unknown, form of dementia.

Lori Nisson is a clinical social worker and family & community service director at Banner Alzheimer's Institute and Banner Sun Health Research Institute in Arizona. Her experience has taught her the importance of offering critical education, support and care strategies to help people and families live a better quality of life with dementia. She answered a few of the most common questions for us:

Who is affected by FTD?

Our familiarity with Alzheimer’s disease has led the world to believe that dementia is reserved almost exclusively for people of advanced age. However, “individuals between 45 to 60 years of age are among the most affected by FTD. It is the most common form of dementia for those under 60,” Nisson explained.

Family history plays a key role in predicting risk. “Up to 40% of affected individuals with FTD have a family history that includes at least one other relative diagnosed with a known neurodegenerative disease,” Nisson said. In fact, genetic history is one of the best tools we have in predicting your likelihood to develop a frontotemporal degeneration.

What symptoms are commonly associated with FTD?

“The first symptoms often involve changes in personality, judgment, behavior, planning and social functioning,” said Nisson. “As a result of changes in the frontal lobe, it is not uncommon for persons to make impolite or inappropriate remarks toward family, friends or strangers when dealing with FTD. Often unwise decisions are made about finances or personal matters and you may see excessive eating, gambling or even sexual disinhibition. Some individuals may demonstrate difficulty with language aphasia that includes the inability to produce a sentence, while others may not be able to understand what is being said. You may also notice difficulty in movement.”

Why is it important to address the symptoms of FTD early?

Nisson explained that disorders related to FTD can often be identified according to the symptoms that appear first and most prominently. You may notice changes in behavior, language or movement first. The development of these symptoms is a key indicator in the type of degeneration you or your loved one may be experiencing. For this reason, it is very important to meet with memory disorder experts early and often, to track the progression of these indicators. “Each person's experience will be different,” said Nisson. “But on average, people live for six to eight years after symptoms begin and the person may experience a rapid decline in functioning through the progression. So be sure to schedule visits as soon as symptoms become evident so that you can develop a diagnosis and plan for care as soon as possible.”

How can we improve the lives of people living with FTD?

“It is critical that families seek the evaluation and care of a dementia specialist,” Nisson said. “FTD can be quite difficult to manage. It’s common for families to feel isolated and overwhelmed. Seek out opportunities to create a care team, put in place advanced care and long-term care planning and connect with an FTD caregiver support group.”

Currently, there are no drugs indicated specifically for FTD, but don’t be discouraged. Nisson shared that “there are many pharmacological and non-pharmacological interventions available to manage symptoms and offer critical education, care strategies, support and resources for people and families living with FTD.” There may also be opportunities for people and families to take part in research to advance the understanding of FTD and work toward finding treatment solutions. Your physicians or the Banner Health team will be able to help you find these vital resources.

Families living with FTD have unique needs. Nisson recommended that families visit the Association for Frontotemporal Degeneration for an array of resources, or call their helpline at 866-507-7222.

To learn more, Banner Alzheimer’s Institute offers clinical evaluations, a comprehensive care model, opportunities to take part in cutting-edge research and a monthly FTD caregiver support group, now offered virtually.

Are you a caregiver to someone with Alzheimer's, FTD or related dementia? Listen to our Dementia Untangled podcast for guidance and support to help better navigate this complicated and challenging role. 

Alzheimers Disease and Dementia Caregiving Neurosciences Senior Health