Help & Support

The early age of onset of many Frontotemporal degeneration spectrum disorders and the changes in behavior and language that can accompany them can make living with Frontotemporal degeneration (FTD) a challenge for both caregivers and patients.  Patients with FTD can be otherwise young and physically healthy, making behavioral management even harder.  Although most people are sensitive to the memory struggles that accompany a diagnosis of Alzheimer’s disease, the communication difficulties and unusual behaviors found in many forms of FTD can leave caregivers and patients feeling socially isolated and misunderstood.  In this section, we offer suggestions for symptom management as well as resources that will improve coping.

Common Medication and Treatments  

Currently there are no curative treatments available for Frontotemporal degeneration (FTD). The current goal of therapy in treatment of FTD is symptomatic relief.  The utility of a medication for an individual patient should be reviewed with a physician who knows the individual well. All medications have side effects and possible allergic responses that should be discussed with the prescribing physician.

Non-Medical Intervention for FTD

Caring for a person living with Frontotemporal degeneration (FTD) can be very challenging—individuals with FTD can experience language and processing difficulties as well as disturbing personality and behavior changes.  Non-medical interventions can be an important strategy in helping an individual with FTD maintain independence for as long as possible and manage difficult social situations.  Non-medical interventions refer to an approach of managing behaviors that encourages manipulation and control of the environment rather than the administration of medications.  Non-medical interventions can be used alone or in conjunction with medical therapies for symptom management.

Advanced Illness and Long-term Care

Frontotemporal degeneration (FTD) is a progressive neurodegenerative disease that will slowly worsen over time.  The average lifespan is approximately 7-8 years from symptom onset, although this time varies considerably from person to person.

There are five stages associated with Frontotemporal degeneration (Piguet, Hornberger, Mioshi & Hodges, 2011).  These stages can help caregivers understand what to expect and to plan for future needs of their loved one with FTD. The stages of disease progression are based on how much the person with FTD relies on another person for assistance with activities of daily living (e.g., bathing, dressing, etc.).