I am 61 and my husband is 84. He was due to attend a Memory Clinic (we are in the UK), but was in hospital so I had to cancel. I did get to speak to the Consultant by phone and he said that the scan showed moderate atrophy of the frontal lobes. I ran through a few things with him such as:
Mentally very abusive
Lack of self care
Non compliance re medications
Desire for sweet food
Short term memory issues
The Consultant did seem to think this was a real possibility. I do need to make another appointment, but I am very scared of my husband and am terrified of how he will behave if he gets the diagnosis. I have no family support and just live with him. I cannot leave as I have cats and finances are not very good. I did see a solicitor 3 years ago but given husband's age and co-morbidities, she advised waiting it out. I do my best to keep husband clean and mediated and deal with most medical appointments as he is very deaf.
I wonder if anyone else has experience of this as it is one of the most unusual types of dementia? I feel totally alone and frightened of the future.
I googled the following general information for you: "Frontotemporal dementia is an umbrella term for a group of brain disorders that primarily affect the frontal and temporal lobes of the brain. These areas of the brain are generally associated with personality, behavior and language."
Disclaimer: The google information is not my authoring.
Which FTD groups are you in? I'm in two as well-one in California and the other Chicago. Good groups too. They meet monthly.
Otherwise, at least FTD is getting more attention with Bruce Willis and his family talking about his diagnosis.
My husband has been on a plateau for awhile. Some behavior has changed, a bit more forgetful, blank stares, and of course almost no long conversations as that tends to be increasingly difficult for him to sustain. He has always had a sweet tooth, and that has increased a lot. But, eating regular, healthy food-not so interested. Not interested in taking a walk. Sleeping a lot. Can't work, not allowed to drive. But, still enjoys playing computer games. Keeps his brain active, that's great! His formal diagnosis was two years ago this month. I'd been noticing problems at least a year earlier. The first imaging was a MRI, could see the changes in his brain. Then a year later a PET scan, which puts a much finer point on how the disease progresses. Before getting a PET scan, make sure insurance covers it, otherwise, it is extremely expensive.
The treatment options are symptom management. That's all. Generally medications for anxiety, depression, mood disorder psychotropic drugs. My friend's father who had Alzheimers, was placed on phenobarbital which greatly reduced his screaming. There seems to be a trend in using older drugs for treatment, with varying degrees of sucess. Because all brains are wired a bit differently that what works great for one person, may not for another.
Good luck to those dealing with any form of dementia. It's a cruel disease. Support groups-online or in person, are a huge help.
My father has frontal temporal lobe dementia. For him, his symptoms are his behavior. I'm in the U.S. and cannot comment about the U.K. system.
We were fortunate to join a kind, caring support group. At the first session we attended, I appreciated the leader saying "FTD is the worst of the dementia diagnoses." It sounded harsh but I actually appreciated him not being "nice" or "protective." I am hoping that you can find a support group nearby or online.
Last month we moved my father to a Memory Care Unit. At the time it was so difficult and emotional for my family. BUT now it is actually a relief! Every staff person including the custodial staff and dining staff are trained and understand symptoms. It's difficult to deal with my dad when we are out in public -- but when we get behind the locked door of the ward, I breathe a sigh of relief.
All my best to you and good luck.
Please use the helpline at the top of this website. Find out who can place your husband in memory care or a mental hospital for evaluation. You need to free yourself of your miserable situation; it is unsafe to live with people (any people) who threaten your well-being.
Above is a link to an online support forum you can join which exclusively deals with FTD.
Also, if you Google or search "FTD chat group" quite a few resources come up in the UK.
Best of luck to you.
Tell his care managers that you're afraid of him. Tell them why. If he's non-compliant with medications, that is a red flag that he needs more care than you can provide. Keep saying these things over and over. You simply cannot take the chance that he will hurt you.
They may tell you that meds will help control his anger. That doesn't mean that they will cure the problem, especially since he has a history of non-compliance.
A random thought: I know someone who had a husband with some of the same issues as yours. He had a stroke. As he was recovering, she told the doctor why she was afraid of him, and doctor scheduled an appointment for both of them with a neuropsychologist. The husband was extensively tested and his diagnosis after about a day and a half of testing was alcohol abuse, intermittent rage syndrome, some other things too. He was put on meds. They didn't help enough, and he was still dangerous. He refused any further treatment, AA or marriage counseling. She ended up having to leave for her safety, but she'd given him a chance to improve.
So you could go that route if you wish, Might help but probably not.
I wish you luck.
https://www.nia.nih.gov/health/what-are-frontotemporal-disorders
When I searched "rare forms of dementia" it was not listed among several. FTD accounts for 10%-20% of all dementia diagnoses.
I searched the Mayo Clinic website and although there's no cure, your husband may benefit from anti-depressants and anti-psychotic medications.
If you are concerned about whether he would take such meds, consider using a "therapeutic fib" that the meds will actually cure him. The goal is to help him attain a more peaceful and manageable state of mind since he can no longer do this on his own.
I'm so sorry you're going through this. This forum has tons of great info and supportive, experienced participants.
Sources:
https://alzheimer.ca/en/about-dementia/other-types-dementia/rare-types-dementia#:~:text=Creutzfeldt%2DJakob%20disease%20(CJD),are%20toxic%20to%20the%20brain.
https://www.mayoclinic.org/diseases-conditions/frontotemporal-dementia/diagnosis-treatment/drc-20354741