Understanding Aggression and Agitation with Dr. Jeffry Maneval
It’s so much easier to discuss difficult things with someone who truly cares about making them better. That is Dr. Maneval to a tee. Kind, empathetic, and full of wonderful, tactile advice!
“This isn’t a one size fits all disease, so there shouldn’t be a size fits all approach to care”
This week’s topic is heavy but our guest, Dr. Jeff Maneval, adds such humility and consideration as he discusses anger, agitation and aggression in FTD. Dr. Maneval is a board-certified neurologist and an assistant professor of neurology at the University of Pennsylvania, Perelman School of Medicine. Beyond that, and likely just as important, Dr. Maneval came to our recording wearing his white physician’s coat AND mentioned that it was his grandfather’s.
That shows the type of gentleness this man exudes!
Thanks for all you do for this community, for the people affected and for their families.
Appreciate you and your work, Dr. Jeff!
We jumped feet first into this episode with Dr. Maneval asking him WHY? Why do we see anger/agitation present in FTD? With a deep sigh, Dr. Maneval began to explain that FTD affects parts of the brain that are in charge of “who we are.” Dr. Maneval continues to explain that FTD takes away the “normal tools” that we all have to combat impulsivity and reactivity so that we don’t agress when something upsets us. (Basically, our brain has our back! And it uses specific mechanisms to keep us in check and regulated. When FTD enters the chat and forces the brain to weaken, we see things that aren’t ordinarily there - i.e. hitting, shoving, etc). That’s a pretty cool way to understand what’s happening in the ol’ noggin, no? Dr. Maneval explains that during the course of FTD and different forms of dementia in general, various symptoms present themselves depending on what part of the brain is affected. “If we see more damage to the right side, we normally see a predominately BvFTD patient, whereas if we see some atrophy on the left, we know speech will likely be affected and lean towards a PPA presentation,” mentions Dr. Maneval.
You guys! Science is Wild!
Dr. Maneval provides a big caveat to studying aggression, agitation and anger within the FTD space - “it’s hard to study as it’s not necessarily based on the disease but what the person is bringing in from their past.” A big part of understanding why a person with FTD is exhibiting aggression or anger involves Dr. Maneval and the entire UPenn (dream) team completing a thorough data collection on behavior and a solid family history (they need to understand the past to treat the present). Beyond that, and more generally, Dr. Maneval explains that these bizarre behaviors (any of them!) really help the clinicians come up with the appropriate diagnosis and helpful ways to manage the behaviors - so he (and we!) encourage you to share IT ALL! Dr. Maneval did totally empathize with how embarrassing it can be to have a behavioral loved one - and both Maria and I can attest to this. It’s hard, you guys!
Taking it back to agitation and aggression in FTD, Dr. Maneval explains that most importantly, keeping yourself and your loved one safe is the biggest and most important piece to this puzzle. If violence is present in the home and things are escalating, the quickest and best thing to do is call 911. If aggression and agitation are more of a common occurrence, Dr. Maneval suggests increasing stimulation throughout the day while also getting to know what triggers your loved one to act out. Stimulation may take shape as more walks, more music, more fidget toys, etc. Find out your loved ones personal incentive - what makes them happy? Dr. Maneval also recommends keeping a behavior log to survey the patterns of behavior and hopefully “get ahead” of any outbursts. If you know your loved one really doesn’t prefer showering, be prepared for them to display their displeasure AND combat that with a reinforcer (i.e “If you take your shower, then we can go grab some ice cream!)” With the most gentle tone, Dr. Maneval reminded us that when our loved ones act out physically, the parts of the brain that cause remorse and repentance are generally “already affected,” so reacting with blame and anger back won’t serve in receiving an apology. Just take a deep breath and move forward.
Another behavior that can co-occur with agitation and aggression is PARANOIA which present as either hallucinations or delusions. As we discuss this branch of agitation, Dr. Maneval nods knowingly - “the best thing you can possibly do is validate, redirect and tap into your empathy.” He continues with “don’t challenge them nor shame them. Love them and hear them.” Avoid confrontation.
“We live in eachother’s worlds, and no one likes a world where they don’t feel understood.”
Dr. Maneval mentions that above all the behavior logs, the kind redirection and loving validation - medication management is just as crucial. If behaviors are happening left and right or a loved one is consistently agitated and upset, Dr. Maneval recommends talking to your loved ones doctor about medications like Rexulti which are used to treat agitation and mood disturbances. At this point, Dr. Maneval also remarks that over the counter sleep aids (melatonin) are useful to promote healthy sleep hygiene. “If any one of us is really rested, we can assume our overall demeanor and behavior will be more amenable than if we’re tired. Sleep is so important in managing behaviors,” Dr. Maneval adds. Sleep disturbances are normally very high with people who have been diagnosed with FTD so Dr. Maneval highly advises that making good sleep a major priority in managing the disease will have extremely beneficial outcomes.
Anger, aggression and agitation in terms of behaviors of FTD are absolutely heartbreaking, they’re scary and very uncomfortable to witness and be part of. We get it. We also believe you are doing your best. Truly.
Keep going.
Lastly, in terms of caregiving, Dr. Maneval really understands how taxing this role can be. Truly. His advice is as follows:
Learn meditative techniques and tap in to mindfullness.
Find a support group full of people you trust. If you don’t like your first option, keep searching. You’ll find your village.
Secure a social worker as a part of your loved ones care team.
Locate a therapist for yourself. Yes, along side the support grous. (We want to shout this one from the mountain tops!)
Don’t discount respite programs. Try it first.
A Special Note From AFTD HelpLine staff
This is such an important topic that is difficult to talk about. As Dr. Maneval shares in his talk, approaches to these symptoms are individualized. We often speak to care partners on the HelpLine to provide personalized guidance, tools and a framework to approach behaviors. The AFTD HelpLine, FTD support groups and our Comstock Grant program are all helpful resources to share to support care partners navigating these symptoms.
A behavior log can be helpful in better understanding the behavior and identifying ways to intervene. However, care partners should know that there are still times when you cannot predict triggers and having a safety plan in place is important. Links to AFTD’s behavior tracker and our resource on managing aggressive behavior are below.
Help & Hope Article: Tips & Advice: Documenting Changing Behavior
AFTD's resource on Managing Aggressive Behavior in FTD
AFTD Conference Session: Responding to High-Risk Behaviors
As Dr. Maneval shares, medications are often another necessary piece in approaching aggressive behaviors. Our past health professional webinar on the Treatment of bvFTD provided additional information about approaching symptoms including the use of medications. This can be another resource for care partners as they talk with their care teams. You can watch the webinar here.
Thank you, Remember Me, for taking on topics like this that make FTD so challenging.
