Does anyone have experience of mixed dementia-FTD and Alzheimers?

[Shaz13]

Hi everyone,

I have just signed up to this site as I'm feeling totally at a loss as to who can help. My Dad was diagnosed with Dementia in May. I went with him and my Mum to the appointment which revealed the results of the MRI scan. I feel like I've had the strength to get through the initial diagnosis so that I can support both my Mum and my Dad. However, I thought we dealt with things well, but the worst thing was that the consultant said that the MRI scan was inconclusive in that it could be Alzheimer's or it could be FTD. He said that my Dad would need to see a psychologist to try and determine which form of dementia my Dad has. My concern was that if it was Alzheimers, we could be missing out on medication whilst we waited, but the consultant told me that the medication could make my Dad worse if it was in fact FTD. I asked him that if was mixed dementia (both FTD and Alzheimers) would my Dad be prescribed the medication for the Alzheimers and he told me yes. So, we had another lengthy wait to see the psychologist and my dad had a 2.5 hour assessment with him. Today, whilst I was at work, my Mum has had to try and chase things up. Finally, the initial consultant phoned her and said that the psychologist report shows FTD and Alzheimers. He then stated that my Dad could not have medication (I wasn't there to be able to say to him that this is not what he told me in May). He then told my Mum that he will go to the Mental Health Team to request a PET scan. (I was told by him in May that this would only be required if the psychologist's report was inconclusive).

I feel as if we are no further forward. I have heard that there is an atypical frontal form of Alzheimers that can mimic the symptoms of FTD, and I'm concerned that if this is the case, my Dad is missing out on medication that could help him. He also told my Mum on the phone that a PET scan can also be inconclusive so I currently feel 'are we ever going to get a proper diagnosis?' I'm really starting to feel very depressed by all this. In trying to help my Dad in some way, I have looked into natural supplements ....he is currently taking Ginko Biloba, vitamin E, Omega 3 and multi vitamins (including B vitamins) but I'm really getting desperate now. I would really appreciate to hear from anyone who has experience of FTD and Alzheimer's, because I can't find much about this as a mixed form of dementia. Does anyone have any details of private dementia specialists who can help try and determine for sure what my Dad has, as I currently feel like we are getting nowhere, and I'm worried for my Mum and if my Dad can have medication to help his symptoms etc then I want him on this asap.

Would also like to know of anyone's ecperience if this is a mixed demntia my Dad has and whether they know of anyone who took medication for Alzheimer's whilst having FTD as well.

Thank you

 

[MaNaAk]

Welcome Shaz,

Personally I don't have experience of FTD so I am trying to keep this thread going but as I type I remember that my dad was on donepezil for Alzheimers but are other medications that can also be prescribed. I think you should go back to your dad's consultant and ask for other medicines. Meanwhile those of you who think you may be able to help Shaz please could you give her some advice if possible.

Good luck Shaz

MaNaAk

 

[Littlebear]

My husband was diagnosed with dementia 5 years ago. He was put on Donepezil which cause him to have horrendous nightmares & to become violent. The doctor was reluctant to take him off the medication as he said it would slow the Alzheimer's down. Fast forward to last year when hubby was being screened for a drugs trial and a lumbar puncture showed that in fact he didn't have Alzheimers but probably a rare form of FTD. The violence & nightmares were happening because the Donepezil was over stimulating his brain. Within days of stopping the meds he was much calmer & sleeping better. I have to say they were the worst 4 years of my life. Sometimes it got so bad I would hide under the kitchen table. I am incredibly angry that we lost what could have been 4 pretty good years. All I can say is be careful and if your husband does go on Donepezil be very aware of the potential side effects. The research doctor said our situation wasn't the first he'd come across.

 

[Littlebear]

P.S. a relative who is a scientist working in drug development suggested Curcumin. He said there is some scientific evidence that it might help Alzheimer's primarily I think because it has anti-inflammatory properties.

 

[Shaz13]

Thank you so much MaNaAk and Littlebear for your replies. Littlebear, that was good for me to read, as so far, I have felt that by denying my Dad medication, they are worsening his condition and allowing it to progress. Whereas your experience of medication is very important - an example of where medication has worsened things as opposed to helping. I have found it particularly hard to hear that they can't prescribe medication until they know for sure. It has made me feel very negative towards the consultant, whereas Littlebear's response shows it's not always good to take the pills and can have a detriment effect. Thank you for showing me a different perspective.

 

[canary]

Hello @Shaz13
I am not surprised that you are confused, it is not always easy to tell the difference between different types of dementia.
My OH has had several different types of scan to try and find out what is going on. I gather that a PET is used to see if it is Azheimers - if it is Alzheimers (even the atypical type) then a PET scan is more likely to pick up the plaques. This type of scan is often used to help work out whether it is FTD or atypical (behavioural variant) Alzheimers. As with most things to do with dementia, though it is not always absolutely certain.

By the way, even if it does turn out to be Alzheimers some people cannot tolerate the donepezil and some people find that it makes no difference, so dont panic too much about the delay.

 

[Philbo]

Hi @Shaz13

My wife was diagnosed with FTD in Jan 2014 and had MRI's and Spect scans. The initial reports stated FTD (with possible signs of AZ) but reports following subsequent memory clinic consultations, stated Frontal variant AZ. From the start, she was prescribed 5mg of Donepezil, which seemed to help with her speech difficulties.

I am very lucky in that my wife hasn't had much in the way of paranoia or aggression, apart from the first 6 months to a year, where she would get very moody (not like her) and complained of hearing strange noises, lights etc. She quickly seemed to retreat into her own happy little world and is always smiling and laughing.

She still takes the donepezil, though I don't know how much good it does now, but as there are no side effects, I am reluctant to stop it in case things worsen.

Her symptoms are not completely typical of FTD or Frontal Variant AZ, so I have quickly become less focused on what type of dementia she has, but more concerned with finding coping strategies to deal with her continuing decline (not always easy).

Best wishes
Phil

 

[Shaz13]

Hello @Shaz13
I am not surprised that you are confused, it is not always easy to tell the difference between different types of dementia.
My OH has had several different types of scan to try and find out what is going on. I gather that a PET is used to see if it is Azheimers - if it is Alzheimers (even the atypical type) then a PET scan is more likely to pick up the plaques. This type of scan is often used to help work out whether it is FTD or atypical (behavioural variant) Alzheimers. As with most things to do with dementia, though it is not always absolutely certain.

By the way, even if it does turn out to be Alzheimers some people cannot tolerate the donepezil and some people find that it makes no difference, so dont panic too much about the delay.

Thank you so much Canary for your reply. I really appreciate it. I have felt quite isolated in that we are not getting regular updates as to what is going on, keep having to try and chase up. And then the fact that the consultant wants to see if a PET scan will be approved makes me think they still aren't completely sure what it is following the psychologist report. Thank you for also explaining about the medication side of things, your reply has been so helpful.

 

[Shaz13]

Hi @Shaz13

My wife was diagnosed with FTD in Jan 2014 and had MRI's and Spect scans. The initial reports stated FTD (with possible signs of AZ) but reports following subsequent memory clinic consultations, stated Frontal variant AZ. From the start, she was prescribed 5mg of Donepezil, which seemed to help with her speech difficulties.

I am very lucky in that my wife hasn't had much in the way of paranoia or aggression, apart from the first 6 months to a year, where she would get very moody (not like her) and complained of hearing strange noises, lights etc. She quickly seemed to retreat into her own happy little world and is always smiling and laughing.

She still takes the donepezil, though I don't know how much good it does now, but as there are no side effects, I am reluctant to stop it in case things worsen.

Her symptoms are not completely typical of FTD or Frontal Variant AZ, so I have quickly become less focused on what type of dementia she has, but more concerned with finding coping strategies to deal with her continuing decline (not always easy).

Best wishes
Phil

Philbo, thank you very much for your reply. Thank you for sharing your experiences with me. My Dad doesn't exhibit typical signs of (FTD) in my opinion, although obviously I am not a doctor. But I am keen for further tests just to try and be sure but I understand from the posts here that it is not always clear. I appreciate your comments re becoming less focused on which type of dementia your wife has. It is so helpful to have heard your experience with this, as it can get very lonely not knowing what to do or where to go for help. Best wishes and thank you for taking the time to reply to me

 

[Philbo]

You are very welcome @Shaz13

If it's any help, although the memory clinic consultant diagnosed FTD, she did still offer to prescribe Donepezil. She explained that it was only licensed for treating AZ, but some patients with other forms of dementia also gained some benefit from taking it.

I had to sign an Unlicensed Medicine Patient Consent Form and the hospital dispensed the initial 3 month supply, after which, our GP continued issuing repeat prescriptions.

Phil

 

[Bunpoots]

Hello @Shaz13

As the others have said don't panic about the lack of medication. My experience with my dad - Alz and VasD - was that Donepezil when first prescribed at 5mg made no difference but as it was tolerated it was upped to 10mg. It took 6 months of awful behaviour from my dad before desperation lead me to this forum and someone suggested that medication might be causing the behaviours we'd seen. Fortunately his consultant listened to my worries and agreed to reduce his dosage back to 5mg and the problems stopped.

Frankly I wish he'd never been given the drug as it caused behaviour from dad that tore our family apart and almost destroyed my daughter's mental health so I'm pleased that your dad's consultant is aware of the possible problems. My dad's wasn't and it took all my powers of persuasion to convince him that I dad's behaviour was because of the drug and not the dementia.

 

[MaNaAk]

Dear Shaz,

I also want to warn you that some dementia medication can affect blood pressure so if your dad has low blood pressure always ask the doctor to check medication. It took my dad to be hospitalised before they realised that they needed to take a close look at his medication. He had Alzheimers, Diabetes Type 2 and other health issues. Often we went to prescription reviews and they would just look at the diabetic medication. It doesn't give much confidence in health professionals in my opinion.

MaNaAk

 

[PJ]

Hi I know this post is a while ago but I was trying to find something relevant to my situation.
Today I had an appointment with the Memory clinic & two doctors were there (1is new) anyway they have suggested another spect scan to see if anything has changed from my previous one & more cognitive tests on a regular basis. They want to monitor it more closely because of my age apparently (I’m 52) Also. Apparently what they diagnosed as behavioural FTD dementia may be Alzheimer’s in which case she said they could try me on doneprazil? Does any of this sound familiar to anyone else?
Thank you in advance for any info

 

[canary]

Hi @PJ
There is an uncommon variant of Alzheimers called behaviour variant (or atypical) Alzheimers which starts in the frontal lobes and gives very similar symptoms to FTD. Its not always easy to tell them apart.

If it is behaviour variant Alzheimers then Aricept (donepezil) could help, but if its FTD it wont (and could, in fact make things worse), so they want to make sure that they know which it is.

 

[PJ]

Hi @canary Thank you so much for your reply. I can now make full sense of it! I will show this to my hubby so we both know what’s happening