More than Muscle: FTD and its Association with ALS

Danielle Geraldi-Samara, MD

March 23, 2023

Danielle Geraldi-Samara, MD
February 9, 2024

Many know that ALS is a motor neuron disease. Simply put, this means that the primary symptom patients experience is muscle weakness. But is the disease really that simple?

What is less known is that in some patients, there may be more to it than just loss of muscle strength. There is an “invisible” disease process that is associated with ALS called Frontotemporal Dementia (FTD). FTD is a type of dementia that involves behavior and language function. Patients with FTD can experience things such as apathy or indifference, disinhibition or impulsivity and fluctuations in their emotions and behavior. They may also have trouble with language function or finding the right words to say.  It can be a bit subtle at its onset, with symptoms being very mild and sometimes hard to notice. FTD has been buzzing around the media recently and so I wanted to take the time to talk a little more about it.

Patients with FTD have damage to the neurons in the brain, specifically in the frontal and temporal lobes. The frontal lobe of the brain controls functions such as language, behavior, emotions and motor function. The temporal lobe has many functions as well including other language functions and memory.

Not all patients with ALS have or will go on to have FTD. It is estimated that up to around 20% of ALS patients will have fully diagnosed FTD. Significantly more patients will have some cognitive or behavioral symptoms similar to those of FTD, but do not meet the criteria for the full diagnosis. Oftentimes, these symptoms might be attributed to depression or anxiety related to having a chronic disease.

FTD does not have a cure, but there are medications that can be used to treat the symptoms.  Two of the mainstays of treatment include SSRIs, that class of medications that is most commonly used as antidepressants, and neuroleptic medications, which are those medicines used to treat symptoms such as psychosis but also behavioral disturbances. In some patients, anti-seizure medications can be used to stabilize a patient’s mood. We do not use the medications that are typically used to treat other types of dementia such as Alzheimer’s dementia such as Aricept. A medication such as this can actually worsen symptoms.

Psychologists, psychiatrists, psychopharmacologists and cognitive behavioral neurology specialists often work alongside ALS specialists when treating FTD in ALS patients. This multidisciplinary team approach is often most beneficial. We, at Synapticure, are here to help this particular group of ALS patients. We can evaluate, treat and work with other doctors and therapists to ensure the most comprehensive care for patients living with ALS and FTD.

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