My husband was recently diagnosed as early stage ftd after four years of me trying to get a diagnosis. Since the diagnosis in October he seems to me to have deteriorated considerably. How do I know if he's early stage of middle stage? Who is going to tell me or is it just up to me to assess? I find this really confusing and difficult to work out.
How do I know if he's early or middle stage ftd?
- Thread starter yorkie46
- Start date
My OH was diagnosed almost 2 years ago, and I wondered the same. It seemed important to me at the time to know 'what stage he was at' -but, do you know - it isn't important.
Learning to cope with your feelings and his life is what is important - and getting the right help. If you don't ask for it, you won't get it, and it is very varied, some more useful than others.
Get yourself a Carers Assessment - if you have not done so. I didn't think I was bothered at first - but it has been the best thing I have done. They are skilled people and pick up on what you say and come up with innovative ideas.
I was bemoaning the fact that I will shortly have a grandchild born over 400 miles away and my partners dementia would mean I would not be able to see my new grandson. The lady doing the assessment, asked if I skyped and I said my computer was old, and did not - she emailed me this week saying I was getting funding to by a new one - how brilliant, because I could never have afforded one.
So back to your original question - the 7 stages of dementia are very rough, people go through them at different rates, and they affect people very differently.
I have found it easier to think ( simplistically) that there are 3 stages - that the early stages lead to diagnosis, then its middle stage when they are still functioning, but not well and cannot do money, read books, follow a film, converse reasonably, and later stage when they need 24/7 care that is beyond what a family member can provide at home.
I am sure other people on here will have some alternative ideas. but Good Luck
Learning to cope with your feelings and his life is what is important - and getting the right help. If you don't ask for it, you won't get it, and it is very varied, some more useful than others.
Get yourself a Carers Assessment - if you have not done so. I didn't think I was bothered at first - but it has been the best thing I have done. They are skilled people and pick up on what you say and come up with innovative ideas.
I was bemoaning the fact that I will shortly have a grandchild born over 400 miles away and my partners dementia would mean I would not be able to see my new grandson. The lady doing the assessment, asked if I skyped and I said my computer was old, and did not - she emailed me this week saying I was getting funding to by a new one - how brilliant, because I could never have afforded one.
So back to your original question - the 7 stages of dementia are very rough, people go through them at different rates, and they affect people very differently.
I have found it easier to think ( simplistically) that there are 3 stages - that the early stages lead to diagnosis, then its middle stage when they are still functioning, but not well and cannot do money, read books, follow a film, converse reasonably, and later stage when they need 24/7 care that is beyond what a family member can provide at home.
I am sure other people on here will have some alternative ideas. but Good Luck
Because every person with dementia can display symptoms differently, progress through the disease differently and have a mix of symptoms from the various 'stages' it is sometimes difficult to give an answer to a question such as this.
The best I can do is refer you to various Society Factsheets. Click the PDF lines for an easier read
What is frontotemporal dementia (FTD)? (404)
PDF printable version
The progression of Alzheimer's disease and other dementias (458)
PDF printable version
Here is a link to a web-site that gives a detailed description that members have found useful. Although it relates to Alzheimer's, all dementia types tend to show similar end stages, even though they may differ in the early stages - this is because the brain pathology tends to be so widespread in the late stages that they are all similar.
https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/
The best I can do is refer you to various Society Factsheets. Click the PDF lines for an easier read
What is frontotemporal dementia (FTD)? (404)
PDF printable version
The progression of Alzheimer's disease and other dementias (458)
PDF printable version
Here is a link to a web-site that gives a detailed description that members have found useful. Although it relates to Alzheimer's, all dementia types tend to show similar end stages, even though they may differ in the early stages - this is because the brain pathology tends to be so widespread in the late stages that they are all similar.
https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/
Well @maryjoan so much you said here makes sense to me, for the first time. Thank you.
It’s the stages thing. I have always wondered what stage my husband is at, but your 3 stages makes so much sense to me. I’ll go with stage 2 for him at the moment and stop searching for more answers.
It doesn’t help that the rest of our world doesn’t se anything wrong with him. Grrrrrr.... but I do, oh my goodness I do.
When I was trying to get a diagnosis I used to write down all the odd things he did. But there were so many. Anyway I stopped, perhaps I should start again.
Perhaps I too should go for a carers assessment?
Good luck with your new grand child.
We have two great grandchildren also living a 4 hour drive away, and last night my gorgeous, thoughtful and caring granddaughter in law (she is so much more caring than my granddaughter) sent me pictures of my great granddaughter. It made my evening. I went to bed with a smile.
Thank you MaryJoan for your posts...
Love B xx
Oh I know that one. When OH had been given a diagnosis of FTD we had occasion to go to our GP. The GP had all the letters from the neurologist, but still said "well he doesnt look like someone with FTD" I was too flabbergasted to say anything, but I wondered what someone with FTD looked like. Two heads? Green skin?
Thank you all for your helpful responses.
I know, maryjoan that I need to do a carers assessment. They have been nagging me to do it for some time now. I don't know if it's the same everywhere but in my area I have to complete it online and they then phone to talk through it. I just find it so daunting to even think about but I know I will have to do.it eventually. I seem to have so little time free for that sort of thing and having recently been battling with depression and now anxieties it doesn't make it easier. I had hoped to get a joint care and carers assessment but that now looks unlikely, the social services dept have told me that because my husband doesn't need help with personal care they won't do a care assessment. I know this is wrong but just at the moment don't have the energy to deal with it. I keep telling myself that after Christmas I will have to make a real effort to address these issues.
The idea of three stages is helpful, I've always tended to think of it that way. I really feel going by your criteria that my husband hovers between one and two. As with most dementia sufferers he has good and bad days, sometimes he can do a certain thing and another day he might seem to struggle with it. He certainly finds it difficult to follow tv programmes, even the soaps he watches all the time. I've also found recently that he's beginning to have difficulty with shopping. He bought two spray deodorants thinking they were solid stick ones, how I don't understand because they were tall cans! He said he was in a hurry hence the mistake. I've been dealing with checking his bank account for a long time now because he got so muddled. One of the worst things for him to deal with us change, I recently had to replace the microwave and because the old one wasn't working properly I have had to adjust the tim ing if things on the new one. He can't remember the new times so things keep boiling over,I've written them in the whiteboard but he doesn't remember to look. It's the little things that catch you out every time! By the way he's since found one of the spray deodorants doesn't work so is intent on taking it back sometime, that's if he remembers where he got it from. You have to laugh sometimes!
I know, maryjoan that I need to do a carers assessment. They have been nagging me to do it for some time now. I don't know if it's the same everywhere but in my area I have to complete it online and they then phone to talk through it. I just find it so daunting to even think about but I know I will have to do.it eventually. I seem to have so little time free for that sort of thing and having recently been battling with depression and now anxieties it doesn't make it easier. I had hoped to get a joint care and carers assessment but that now looks unlikely, the social services dept have told me that because my husband doesn't need help with personal care they won't do a care assessment. I know this is wrong but just at the moment don't have the energy to deal with it. I keep telling myself that after Christmas I will have to make a real effort to address these issues.
The idea of three stages is helpful, I've always tended to think of it that way. I really feel going by your criteria that my husband hovers between one and two. As with most dementia sufferers he has good and bad days, sometimes he can do a certain thing and another day he might seem to struggle with it. He certainly finds it difficult to follow tv programmes, even the soaps he watches all the time. I've also found recently that he's beginning to have difficulty with shopping. He bought two spray deodorants thinking they were solid stick ones, how I don't understand because they were tall cans! He said he was in a hurry hence the mistake. I've been dealing with checking his bank account for a long time now because he got so muddled. One of the worst things for him to deal with us change, I recently had to replace the microwave and because the old one wasn't working properly I have had to adjust the tim ing if things on the new one. He can't remember the new times so things keep boiling over,I've written them in the whiteboard but he doesn't remember to look. It's the little things that catch you out every time! By the way he's since found one of the spray deodorants doesn't work so is intent on taking it back sometime, that's if he remembers where he got it from. You have to laugh sometimes!
That is just dreadful. Do you still have the same GP? I think what they said is disgraceful and he/she needs to be bonked on the nose by a distressed carer. Seriously, how do you trust someone like that again. Love B xx
Your last paragraph is just like reading about my husband, except my husband has no way of getting to the shops unless I take him.
It’s tough isn’t it? I don’t know how many times I write, say or think this phrase, but I just think our lives are so tough, our caring role is thankless, and I think that the professionals involved and the government just take us for granted. We do what we do out of love and because there is no one else. We don’t do it out of choice because there is no other choice.
Now I’m on my soapbox and I’m even boring myself!
So I will only add, take care, love B xx
That GP has fortunately retired, but I must say that I dont totally trust the GPs any more and avoid going if I possibly can
All I can add is that when mum died in February (of a physical problem) I had no idea at what 'stage' she was at. I knew that the need for care was accelerating, I knew she no longer had any conversation, but in other ways she could still do a crossword (although sometimes had a problem with the spelling) and when Countdown was on she got the conundrum before me every time. She had mixed vascular and Alzheimer's and I guess it was just which bit of the brain was affected and whether or not new pathways could be made to help her. After diagnosis I never really asked the GP about her dementia progress as, TBH, I think I knew more than they did. I just got help as it was needed and went with the flow.
Yes SadStaffs it is tough and I'm sure we all feel at times that we never signed up for this. I can understand why some people completely buckle under the strain, being a carer is a huge responsibility.
It's our golden wedding anniversary in January but I can't plan any celebration because he wouldn't enjoy it. I think our daughter is sad for my sake that she can't arrange anything but I've made it clear it wouldn't be a good idea. She completely understands which is more than can be said for some of the medical profession!
It's our golden wedding anniversary in January but I can't plan any celebration because he wouldn't enjoy it. I think our daughter is sad for my sake that she can't arrange anything but I've made it clear it wouldn't be a good idea. She completely understands which is more than can be said for some of the medical profession!
