Understanding Hyperorality & Alcohol Use with Dr. Sara Manning

Written By Maria and Rachael .

Hello! Maria here. Steppining in for Rachael on this week’s blog. Surely it won’t be as well written, but STAY WITH ME! This was one of the only episodes ever recorded without both of us on there - so I’m sorry to disappoint you but it’s me, Maria, writing to you today! I am not as talented a writer as my partner-in-crime, Rach, but stay with me! I’ve got some important info from the lovely Dr. Sara Manning.

In our chat, we dived into the topic of Hyperorality. Dr. Manning defined hyperorality as really having 2 distinct aspects to it:

  1. Changes in eating and drinking

  2. Changes in the mouth itself

Examples of changes in eating and drinking she describes as potentially eating sweets, carbs, drinking a lot of alcohol or things like grinding your teeth or needing to have gum in your mouth or putting things in your mouth that aren’t food (sometimes referred to as PICA).

Dr. Manning goes on to explain that the part of the brain that tells you things are “gross”, well, that part of the brain stops working as a result of FTD.

A major tip she provides, which becomes a recurring theme in this episode, is try your best to control the environment. Because there is little insight, it is not possible to correct the behavior. For example, if someone continuously eats something that makes them choke, the repeated choking doesn’t give them reason to stop… again, because of the lack of insight.

Dr. Manning tells me that this behavior can happen anytime in the disease process - however the aspect of putting non-food items in your mouth tends to be a later symptom. However, drinking is typically an early symptom… and unfortunately, oftentimes a symptom that occurs before diagnosis. 

I asked Dr. Manning about the prevalence of drinking in FTD - and although she had no direct statistics, she anecdotally shared that the vast majority of people living with FTD will show hyperorality, particularly with the behavioral variant.

As we continued to dive into the subject of alcohol use or abuse, she shared her theory that perhaps alcohol use is so common because it straddles both the disinhibition and hyperorality that occurs in the disease… and as she but it, It’s also 1) accessible and 2) fun for people. She said that drinking to excess is quite common - but also people just seem to be more sensitive to alcohol, so they can appear more intoxicated than they actually are. And if you have PPA, you already have a language issue so you will sound more slurred.

I asked Dr. Manning for support for families dealing with this behavior… or just how to process it as you reflect on the memories years later. Dr. Manning reiterated that we should remember people lack insight that what they’re doing is out of character for them or something harmful. And because it happens early on in the disease course it’s particularly difficult to address because your loved one may be still driving, working, they may be independent – making it very hard to control. Later in the course it can become easier because you can control the environment better and what is available. At that time, apathy can be taking over as well.

In terms of other strategies for dealing with alcohol consumption, she shared that some families buy beer bottles and refill them with non alcoholic beer.  But overall, she acknowledges that is really so extremely challenging to address for people who are so high functioning. 

I asked if alcohol perhaps is a way of coping with the anxiety of “changing” due to the disease. Dr. Manning explains that it’s possible, but likely not common because most people with FTD don’t have a sense that something is wrong. The one caveat is that people with PPA may be very aware that something is going on and that provokes anxiety and they may have the earliest symptoms of that behavioral stuff and they are just disinhibited enough to treat the anxiety with alcohol. 

She acknowledges that it's so hard to know in some moments whether that is your person or the disease and so the biggest thing is trying to remind yourself when these really abnormal behaviors come up that this part is the disease. This is not a moral failing.

“This is not a person devoid of goodness. It is a disease in their brain that is causing them to have these behaviors.”

To round out the topic of hyperorality, Dr. Manning explains that sometimes people have sensory seeking behaviors or things that border on obsessions. These patients tend to always want to have something in their mouths  and sometimes it's even very rigid like they chew a piece of gum for 10 minutes or teeth grinding. Sometimes even doing it all day.

Thinks that are hyperoral and obsessive seem to be more responsive to being managed with medications. Often using antidepressants. But she says, with the obsessive behaviors the goal is really to not necessarily treat them unless they are dangerous. Even though things like grinding teeth could appear to be symptoms of anxiety, they may not be a sign of discomfort.

And lastly, we touched on the heavy eating. She reiterates that restricting access is key… and to remember it’s not that they have no will power. It’s that they have a disease.

She encourages families to answer this question when evaluating behaviors “is this sometime we need to treat?” and that can sometimes put the hyperoral behaviors in perspective. 

“Families that cope the best are the ones that realize and accept that they can't control everything.” Something Dr. Manning admits it is much easier said than done, but a good thing to practice. 

You are not alone in this, remember that. 

-M

  • Hyperorality presents as changes in eating and drinking or other forms of mouth behavior. The specific behavior can change throughout the progression with FTD and is the result of the disease- not something the person can control.

  • Hyperorality is further complicated by other symptoms in FTD such as disinhibition, impulsivity, lack of social awareness and a tendency to develop compulsive behaviors.

  • Not all hyperoral behaviors need intervention. When there are risks involved, approaches focus on ways to control the environment to reduce the risk of the behavior, recognizing that this can be especially challenging in early stages when the person is more independent.

  • Alcohol can be a focus in hyperorality, often in earlier stages or even before a diagnosis is made. Non-food items tend to be the focus in later stages.

Resources from AFTD

Maria and Rachael .
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