Your loved one says something rude to the waiter. Takes their clothes off in public. And their memory seems fine.
That’s often what frontotemporal dementia looks like in the beginning. Not forgetting. Behavior and personality changes.
I’ve talked about vascular dementia, Alzheimer’s disease and Lewy body dementia before, and I’ve had a lot of requests for this one. So here are the signs and symptoms of frontotemporal dementia, how it’s different from the other types, and one thing you can do when the behaviors make going out in public hard.
What Dementia Actually Means
First, a quick reminder, because I still get a lot of confusion about this. People say, “I thought Alzheimer’s disease and dementia were the same.” Or, “I thought they were different.”
Think of the word dementia the way you think of the word cancer. When somebody says they have cancer, you know something in their body is sick. But it doesn’t tell you what kind of sick. Is it lung cancer? Breast cancer? Skin cancer? Brain cancer?
Dementia is the same. It means the brain isn’t functioning the way it should for that person’s age. Somebody is having a lot of problems with their thinking, to the point that it’s impacting their daily life. But the word doesn’t tell you what’s causing it. Lewy body dementia, frontotemporal dementia, vascular dementia, Alzheimer’s disease, dementia due to Parkinson’s, dementia due to alcohol… there are all kinds of specific types.
People use dementia and Alzheimer’s interchangeably because Alzheimer’s disease is the most common type and the most researched.
In the beginning, the different types can come on in different ways. Different things cause them, and they can progress a little differently. By the moderate to severe stages, they all start to look alike, because the impairment is so great and affects so much of the brain. But early on they can look quite different.
I go into more detail on the difference in is dementia the same as Alzheimer’s disease?
What Is Frontotemporal Dementia?
Our brains have different lobes. Two of them are the frontal lobes, at the front, and the temporal lobes, on the sides. Frontotemporal dementia means these lobes are shrinking and struggling.
It also tends to come on earlier than other types of dementia. The symptoms usually start to show up between the ages of 40 and 65.
Early Signs: Behavior and Personality Changes
In the beginning, the symptoms tend to be behavior and personality changes.
Because the person is younger than you’d expect for dementia, and the change in behavior is so drastic, it’s not unusual for them to be diagnosed with a psychiatric condition before anyone realizes it’s dementia.
Some of the changes you might see:
- Socially inappropriate behavior. Losing the filter. Saying rude and mean things in public without caring how it might affect the other person.
- Hypersexual behavior. Taking off their clothes or touching themselves in public. Things you as a caregiver are going to find embarrassing and difficult.
- Increased irritability.
- Lack of affect. Their facial expression and tone of voice don’t change with what’s being said. When we hear something sad or hurtful, our faces change a little, and our voices might get lower. For the person with frontotemporal dementia, it can be completely flat. A dog licked their face today, or somebody died. Same expression either way.
- Eating a lot, or putting things in their mouth. Even things that aren’t edible. It can be a real fixation.
If the lost filter is what you’re living with, I explain what’s happening in the brain in 5 strange dementia behaviors that actually make perfect sense.
Language Problems in Frontotemporal Dementia
Language is the other common category of symptoms. Your loved one might:
- Not completely understand language
- Have trouble naming things
- Have trouble building a sentence, putting the words in the wrong order
How Frontotemporal Dementia Is Different From Alzheimer’s
You can see behavior and language changes in other types of dementia too. So how do you tell?
Brain imaging can show the effect on the frontal and temporal lobes. And the younger age of onset tips you off that it might be frontotemporal dementia.
It tends to have a slow, gradual decline, similar to Alzheimer’s disease, and it often gets confused for Alzheimer’s.
Why Memory Can Be Fine at First
Especially in the early stages, the person with frontotemporal dementia has problems in the behavior category and the language category. But their memory isn’t necessarily impacted much.
You don’t have to have memory impairment to have dementia. That used to be a requirement years ago. Now it means impairment in several areas the brain is responsible for, and memory is just one of them. I talk about this in 5 facts about dementia I wish everyone knew.
With frontotemporal dementia you can already see two areas: social functioning, behavior and personality in one, and language in the other. Those two areas, along with the negative impact on daily life, are enough for a dementia diagnosis.
Why It Can Take Years to Get Diagnosed
Because it comes on so gradually and slowly, some people don’t get an official dementia diagnosis until they’ve probably had it for years. It’s the behavior and personality changes that can lead to a psychiatric diagnosis first.
How Long Can Someone Live With Frontotemporal Dementia?
Just like other dementias, it varies greatly, from a couple of years to 20 years.
It’s different for everybody. Lifestyle, the help they have, their diet, the exercise they’re able to do, other health conditions, other medications, and whether they have another dementia on top of the frontotemporal dementia, because you can have more than one at the same time.
When the Behaviors Make Going Out in Public Hard
These socially inappropriate behaviors are really hard on you, the Careblazer. They make going out in public challenging. You might get to the point where you don’t want your loved one to go out anymore, and that can reduce their functioning even further.
Here’s something you can do. Make a little card, business card size or a bit bigger, that explains clearly and simply:
“My loved one has a brain condition that causes them to say and do things that are sometimes unexpected. Thank you for understanding.”
On the back, you can write frontotemporal dementia, or whatever you feel comfortable with. It’s different for everybody.
Then, say you’re out to eat and your loved one says something rude to the waiter or waitress. You can slip them the card and let them know what’s going on. In some ways that might lead to more compassion and understanding. Same thing if your loved one is getting a haircut and says or does something. Just pass the card to the person cutting their hair.
If anything, it eases your discomfort, and maybe your embarrassment about what your loved one might say or do in public.
Does Frontotemporal Dementia Have a Cure?
There’s a lot of confusion about what causes the different kinds of dementia. For frontotemporal dementia, it’s really not clear what the cause is. Can anything slow it down? Can it be reversed? What about the medications? There are a lot of questions, and it’s really confusing.
There are dementia medications. But there is no cure for dementia, and no dementia medication that’s going to truly slow down or stop the disease. Part of the reason is that it’s not just one thing causing the dementia in the first place.
Since this video, two drugs have been approved that can modestly slow early Alzheimer’s disease, lecanemab and donanemab. Neither is approved for frontotemporal dementia.
And this matters for you, too. Simply being a dementia caregiver can increase your own risk of getting dementia, especially if you’re caring for a spouse. In one study of older married couples, people whose spouse had dementia were about six times more likely to develop it themselves.
I want to keep you as healthy as possible.
Living with these behaviors in public, and the questions with no clear answers, is a lot to carry by yourself. Inside the Care Collective, we talk through exactly this every week: what’s happening in the brain, how to handle the hard moments when you’re out, and how to take care of your own health while you care for your loved one. You can learn more here.
Sources & References
Norton MC et al. Greater Risk of Dementia When Spouse Has Dementia? The Cache County Study. Journal of the American Geriatrics Society, 2010: https://pmc.ncbi.nlm.nih.gov/articles/PMC2945313/
U.S. Food and Drug Administration. FDA Converts Novel Alzheimer’s Disease Treatment to Traditional Approval (lecanemab), July 2023: https://www.fda.gov/news-events/press-announcements/fda-converts-novel-alzheimers-disease-treatment-traditional-approval
U.S. Food and Drug Administration. FDA approves treatment for adults with Alzheimer’s disease (donanemab), July 2024: https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-treatment-adults-alzheimers-disease
