Tackling a major behavior in FTD, Dr. Lauren Massimo delicately and thoroughly takes us through the ins and outs of what she refers to as the most “common symptom” of FTD.

We loved our conversation with Dr. Lauren. She was a real gem, real brilliant and real passionate about her work within the field of FTD.

(To learn more about Dr. Massimo’s career, click here or read on!)
*Via the* *UPenn FTD centers* *website:* “Dr. Massimo’s research focuses on identifying the cognitive and neural basis for decline in neurodegenerative disease. Over Dr. Massimo’s decade-long career as a nurse practitioner in cognitive neurology, she has enjoyed the opportunity to work with and support many patients with neurodegenerative disease and their families.”
Thanks for your dedication, your effort and your understanding, Dr. Lauren!

Dr. Lauren had the daunting task of speaking to a significantly common behavior in FTD: Apathy. But, you guys, she speaks about this complex behavior with such an empatheitc approach ( I know we are one episode in, but i’m starting to see a pattern here… An empathetic approach to care. Let’s keep that on our radar). We begin with a very simple definition of apathy from Dr. Massimo who describes it as a “lack of motivation.” Apathy, she continues to tell us, is the most distressing behavior for caregivers proven by a study done back in 2009 that Dr. Massimo refers to as “an oldie but goodie.” You can read said study in it’s entirety here.

Dr. Massimo continued to define apathy, in regards to FTD, as the earliest behavioral symptom to present itself and roughly seen in about 90% of Behavioral Variant FTD. Maria and I knowingly nodding as she speaks. Lauren mentions that through her research and her diligent work on apathy that caregivers generally report this specific behavior to be the most troublesome and burdensome as the person affected “loses their initiative to actively participate in their life.” Similarly, the Association of Frontotemporal Degeneration (AFTD) states, “Caring for a person with apathy is particularly challenging due to the physical and emotional demands associated with performing activities on their behalf.” You can read The Partners in Care Newsletter here.

Apathy is tough, y’all. So heartbreaking.

Dr. Massimo continues to describe the complexities of apathy by explaining the different types that are most commonly seen in people with FTD. Lauren classifies them as follows:

Cognitive Apathy:
- Difficulty planning, difficulty sequencing and organizing, executive dysfunction.
Emotional Apathy:
- Diminished responsiveness, decreased emotional expression, lack of interest, withdrawing.
Initiative Apathy:
- Waning motivation, difficult/challenging to “get going,” lack of understanding how to start a task

Lauren explains that these different subtypes of apathy can definitely overlap and change over time. Lauren also mentions that apathy typically gets worse overtime and can sometimes persist throughout the course of the disease. Lastly, the three of us discuss the fundamental and overarching complication to this behavior and that is the general lack of insight the affected person has.

“When you tie it back to the disease, it feels less personal.”

We begin to wrap up our discussion with the question we’ve all asked ourselves at one point or another on this journey. How do I manage this behavior? Well, sweet Lauren sheds some light on this question and gives her best piece of advice. Dr Masimmo begins her recommendation by reassuring us (and you!) that there is a direct correlation between the behavior and what is happening in the brain. “This is part of FTD, it’s nothing that the person is trying to do,” Lauren continues. “Apathy arises from and because of the disease.” The biggest and strongest way to combat this behavior is to simply decipher what is most rewarding to the individual affected and use it for motivation. “If your loved one is strongly motivated by walks or by eating or by … whatever, you have to use that to your advantage.” She calls it the “IF THEN” and then gave this example. “If you get up and get dressed now, then we can go right on our walk” or “If you take a quick shower, then we can have some ice cream. Lauren also suggests using physical and auditory prompting (Alexa will be your new bestie!) to get them going.

We loved chatting with Dr. Masimmo, a true gem of a human. Her gentle demeanor mixed some major determination and grit make her such an easy person to talk to. She genuinely cares about FTD, the people affected and their families who walk this journey alongside them.

Dr. Masimmo, we so enjoyed working with you this season and are so honored to call you our friend.

Following a predictable routine for the day (or morning, or evening) can help a person move through activities.
Sometimes simply doing an activity with the person to help them get started can overcome initiation challenges.
Keep it light - add music as a way to change the mood and motivate someone to get started.
Everything is harder to do with a brain disease. Keep expectations fair, activities simple and based on the person’s long standing interests.
People with FTD need more rest. Honor the need for a balance of rest and activity.