Let’s Talk About Frontotemporal Dementia

Recently, I came across an article that struck a chord with me. Terry Jones, a member of the comedy team, Monty Python’s Flying Circus, announced his diagnosis of frontotemporal dementia (FTD) in September 2016. A newer interview provided an update about Terry’s condition, and also a request from his family: raise awareness about FTD and help others cope with it.

As an advocate and educator of dementia care practices, I want to honor their wishes by sharing more information about this less well-known form of dementia.

What Is FTD?

Frontotemporal disorders are family of neurodegenerative diseases that affect the frontal and temporal lobes of the brain and can lead to dementia. According to the National Institute on Aging, FTD represents about 10 percent of all cases of dementia.

There are three main types of this dementia: the language variant, the behavioral variant and the movement variant. There are also subtypes within each variant.

All forms of FTD are progressive and fatal. FTD is most often seen in middle-aged people, typically in their 40s, 50s and 60s.

Over time, individuals with FTD may show losses in language use, mobility, memory, continence and judgment problems associated with other dementias. In addition, they have the distinct symptoms of their particular FTD variant.

Language

Another name for the language variant is primary progressive aphasia (PPA). This is the form of FTD Terry Jones has. The subtypes include:

• Semantic dementia – involves the loss of word meanings and names along with problems finding words
• Progressive nonfluent aphasia – leads to difficulty producing language fluently even though the person still understands word meanings; phone conversations and complex sentences may pose difficulties

Some people with the language variant eventually lose all ability to make and understand language, while others have more specific limitations. Helpful interventions include working with a speech and language pathologist throughout the course of this dementia as well as developing nonverbal communication methods, such as the use of a word board

Behavior

The behavioral variant is the most frequently diagnosed type of FTD. Common behaviors associated with this dementia involve an overwhelming drive for self-gratification, often related to food, drink, gambling, shopping, trespassing or sex.

This form of dementia is challenging for family and other caregivers because it is marked by extreme personality changes and loss of personal restraint. Someone with behavioral FTD may exhibit wandering, impulsivity, lack of personal hygiene, withdrawal, repetitive behavior, mood changes, lack of empathy and lack of self-awareness.

Movement

There are three motor disorders also associated with the movement variant of FTD. These include:

• Amyotrophic lateral sclerosis (also known as Lou Gehrig’s disease), which leads to progressive muscle weakness or wasting along with behavioral and language issues that occur in behavioral FTD
• Corticobasal syndrome, in which arms and legs become uncoordinated or stiff; characterized by the inability to use arms and hands for movement, despite normal muscle strength
• Progressive supranuclear palsy (PSP), which results in muscle stiffness, difficulty walking and abnormal posture; a distinctive symptom is difficulty with eye movement, particularly, looking down

People with the movement variant need help to transfer safely from lying down to sitting to standing and back again. They need help with many tasks, small and large, as well as support while they are walking.

ComForCare/At Your Side offers in-home DementiaWise^® care that can help people with dementia live their best life possible. To learn more about various types of dementia and some best care practices, download our Family Guide to Dementia.

Please help me raise awareness about FTD and all types of dementia by sharing this blog through social media.