Mother (83) has had signs of dementia for at least a year. The doctor diagnosed her with Frontaltemporal lobe dementia. Anyone have experience with this? -

Mother (83) has had signs of dementia for at least a year. The doctor diagnosed her with Frontaltemporal lobe dementia. Anyone have experience with this?


It has become severe in the last few months. Frontaltemporal lobe dementia. She is in the late stages and he said she would progressively worsen rapidly. She is able to feed herself and ambulate with assistance. Does anyone have experience with this? I don’t know how long my Mom may have left.



My DW was diagnosed June 2016 with FTD with aphasia. She has an obsession with buttons (the kind you press or push). She has nearly lost her ability to speak english. She uses word of her native language that I don't understand.
There don't seem to be any meds she can take. Two were tried this year and she had a bad skin reaction to them. She is getting slightly worse each week. She still eats, bathes and , walks good. Dressing can be confusing. She may put on a second blouse instead of slacks. She seems to have sundowner and gets anxious in the evenings. She sleeps a lot.
Has spurts of anger when told to do somethings.
She has a few other health issues. Currently it is higher than normally controlled blood pressure and her kidneys are not at full capacity. We are trying to get the blood pressure under control without harming her kidneys more.
As expected, I worry constantly, which is raising my own BP. I have been told that she is in the final stages by our PCP. If that is true I feel it is the very early stage of the final stage.
I guess only time will tell when this will end.
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Reply to OldSailor

My husband is 67 and was diagnosed with FTD four years ago. He has not been able to communicate for years and is now having near constant uncontrollable laughter (Snd our insurance will not pay for the $800/month medication for this). There are two variants of FTD—behavior and speech. I watched a webinar that helped explain the differences in the dementias, and addressed FTD specifically. It was offered by Banner Health a little over a year ago (I think) and was called Non Alzheimer’s Dementia webinar. It’s been archived and should be available for viewing. This disease is rare and has its own difficulties, though I understand it overlaps more and more with the other dementias the more it progresses. Best wishes to you.
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Reply to Rafaela

My husband was diagnosed approximately 5 yrs ago after an MRI showed shrinkage in the frontal temporal lobes. The neurologist told us no two cases are alike and progression can be from 6 months to rarely 20 yrs, with 10 being the average. Knowing nothing about this form of dementia, I read extensively on the internet and books from the library which helped to answer so many questions I had. He takes Donepezil as well as Namenda XR, whether they are helping to slow it down, I don't know, but don't want to stop the meds if they are. Now, my husband is in the moderate stage, physically well, still able to walk the dog near our home, but mentally struggles with simple tasks, such as using the TV remote, sometimes changing a light bulb. He can't write, understand numbers, has difficulty finding words to speak. I have to explain things to him, sometimes he accepts what I say and other times, he will argue, in his mind, he is right. He finally agreed to me obtaining POA, financial and for health. This is extremely important as SS, insurance companies, physicians, won't discuss your loved ones personal information without the POA and you want to obtain it while they can still sign or mark an X in front of an attorney and notary. I live each day, some days are better than others, wondering what will happen next, how the progression will continue. He wants to live and die in our home, something I hope to be able to honor. But the fear of not being able to, is on my mind constantly. Everyone says not to worry live each day as it comes, easy to be told, not easy to do. I wish everyone who is dealing with this devastating disease the best. May God be with us all, giving us the strength to get through it.
Just realized I didn't give my husbands age. He is 64 now.
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Reply to tomkat

Bumping up.
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Reply to Llamalover47

I am so sorry to hear this. Let me tell you about this disease. My DH had this but he was not diagnosed until late 2016. Usually this hits a younger age group. If this progresses with your mother rapidly, it will make your head spin, the changes are THAT pronounced. My husband also had aphasia, which made everything worse. He tried to commit suicide last summer which landed him in a psychiatric hospital, and then he went into a memory care unit. He was there for only four months and it was both mindblowing and heartbreaking to see this previously intelligent, wonderful person degrade into behaviors of a bad two-year old. He did all kinds of things in the memory care unit, and that was even with medication. Since he was perfectly mobile and physically strong, it gave the nursing staff a lot to deal with, as he would get combative without warning. He passed away in October and though I miss him with all my heart, I am grateful to God for mercifully taking him out of this life, where I know he would not have wanted to have been, had he been aware of what he was doing. This disease has no cure and there is no escape. It's been personally devastating for me, as I'm sure it is for everyone touched by any kind of dementia in a loved one. Even with reading up on it, the coming journey will shock you, particularly with aggressive behaviors.
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Reply to RainyDay51

My Dad has suffered from FTD for at least a decade and is in the late middle stage now. I am so sorry about your mother. This disease is a real heartbreaker. You will find all kinds of information and a wonderful supportive (and very knowledgeable!) group at the FTD support forum. You will find it at You need to register, but the mods let anyone caring for someone with FTD in (also those who have it). I cannot recommend it highly enough. These amazing people have been a lifesaver and I learn so much from them. It can take up to 24 hours for the mod to see your request and give you full access to the forum, so don't worry if it takes a little while. Once you introduce yourself on the forum, you will receive a very warm welcome and tons of help.

You will also find good info at the FTD Association website and the UCSF website. There are a couple of books, too: "What if it's not Alzheimer's" and "The Banana Lady".

FTD is a highly variable disease as far as presentation and progression go. There are several variants (behavioral, semantic, primary progressive aphasia, etc). Some patients progress rapidly, some very slowly. When you've seen one case of FTD, you've seen one case, as the saying goes.

My Dad has the behavioral variant and his progression has been slow. That said, in the latest stages, patients tend to progress more rapidly -- but not always. Every case is different. If your mother is still ambulatory and able to feed herself, she is not yet in the final stage and may have some years left.

You can learn about what to expect on the FTD support forum. When you read about symptoms, keep in mind that all patients do not have every symptom or go through all the phases. My Dad went through an irritable phase, but never the aggression and anger phase seen in many patients.

You will also learn lots of effective coping strategies and tips and tricks. Pay special attention to the list of medications NOT recommended for FTD patients. Some of the drugs that are helpful in other forms of dementia can make FTD patients worse. Again, I am so sorry about your mother and wish you all the best in your difficult journey ahead.
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Reply to Laurellel

I was made POA for for my friend, Beth, who was diagnosed with FTD. When she got to the stage your mom is in, I had her in a memory care apartment with her husband, who has memory issues as well. She was incontinent and resisted getting cleaned up by the staff. I was told to take her to a geri-psych ward at a nearby hospital so they could find an anti-psychotic drug that would calm her down without doping her up. It took 3 1/2 weeks there for them to find the right drug and dosage to use. After that, she could be worked with, but her decline was pretty rapid. She needed a wheel chair about a month later, then a reclining wheel chair, than needed to be fed. As she weakened, I was advised it was time to start hospice and a hospital bed was installed in her apartment next to her husband's recliner. Shortly after that, she could no longer swallow and lasted about 1 week from then to her passing. It sounds like your mom is nearing the last months. FTD follows a pattern of decline and it is not something that could take 2 weeks to 20 years. The people who know about this and told me how long she would live when they evaluated her were very accurate. I am grateful for the staff and their expertise in this facility. They did not miss a thing and gave me the best advice on how to handle things and what to expect. I had never done this role before and needed that help. Their great care continues with her husband now, so I am still involved. But at least I don't have to worry about his care. It continues to be superb, having a doctor come once a month to check on him and adjust his meds as his abilities and moods continue to change. The staff doesn't miss a thing and keeps written records of their encounters with him so I can always be updated. 
       There are medications for your mom that will help with her anger and moods.  The geri-psych ward was a wonderful answer for my friend.
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Reply to JohnnyJ

My mom has this type as well.
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Reply to Zoelove

I know I have posted this before but please look up Teepa Snow! She has wonderful and free videos and CD's that you can have mailed to you about how to deal with family members with Dementia and Alzheimer's. I was a special needs teacher and an aid in a nursing home for years for advanced Alzheimer's patience and I still feel like I'm losing my mind some times.
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Reply to Momof5and8

@Anniepeepie - the Caregivers of PD & FTD are extremely exclusive. I tried to join but not worth the hassle of trying to prove I could be an asset to the group. Pity - but their loss, not mine.
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Reply to RayLinStephens