Frontotemporal degeneration (including PSP and CBD) – Webinar notes

Back in December, the Alzheimer’s Foundation of America offered a webinar on frontotemporal degeneration (FTD), which includes two atypical parkinsonism disorders — corticobasal degeneration (CBD) and progressive supranuclear palsy (PSP).

The speaker was Sharon Denny, Senior Director of Programs for the Association for Frontotemporal Degeneration (AFTD). She discussed the different FTD syndromes, the types of changes and complex care needs that can occur, and the impacts on the family and caregivers. The webinar ended with a Q&A session.

These descriptions were given of PSP and CBD:

Progressive supranuclear palsy (PSP) is a variant of FTD that is characterized by imbalance and unexplained falls; stiff, slow movements; and trouble coordinating eye movements. To learn more about PSP, read more here.

Corticobasal syndrome (CBS) is an FTD variant that causes rigid, slow, reduced movements, apraxia (inability to perform tasks or movements despite knowing how), and limb or fine motor control. To learn more about CBS, read more here.

A question that arose was how caregiving for those with FTD may differ from caregiving for those with Alzheimer’s disease (AD):

Q: Can you give an example of an intervention that would be different in FTD than in AD?  

A: What are the changes in the environment that are going to reduce the disruptive behaviors? Look at the environment and see what we can change to work for that person. An additional challenge is that those with FTD often still retain memory, unlike those with AD.

Compulsive behaviors, such as eating or wandering– nothing is going to completely stop this. But lots of symptoms are triggered by visual stimuli. For instance, is someone gets focused on eating cookies, remove visual triggers. Put away the cookies out of sight!

A lot of non-pharmacologic interventions are about changing the environment or providing additional support for the person with FTD. Those with FTD can be much more vulnerable to online scams, since they may have access to computers but impaired judgment. Try to find ways to allow them to still use the computer but limit those risks.

Lauren Stroshane with Stanford Parkinson’s Community Outreach listened to the webinar and shared her notes here:

The webinar recording is available to watch for free on YouTube here: