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Does knowing they have dementia help PWD?
- Thread starter Chocco
- Start date
All my husband was focused on was the fact that his HGV was taken from him at his diagnosis appointment, and the fact that he had been told he had Alzheimer’s was of no consequence to him. He didn’t want to know and didn’t want to talk about it. I really regret that we brushed it away.
It didn’t really change anything, my OH doesn’t believe there is anything wrong with him and is still furious that he is not allowed to drive. It makes me feel a bit more sane tho!
It just seemed to go right over mums head, as if the doctor was talking about someone else. She still didnt believe that there was anything wrong her afterwards.
im very lucky that we can discuss it and use the word dementia. ive never hidden it and it was me that had to break the news of the results. if he doesnt understand anything, he will ask me to explain. we dont dwell on it and he has said he would rather be told. he knows himself that hes getting worse. he seems to just trust me to do what is best for him.
My husband too was mainly upset about losing his licence and tried to get it back ie a £50 call to DVLA. After 2 or 3 months he settled down - he still does not want to discuss diagnosis but follows my lead on nearly everything. Not sure if his placidness is down to Memantine or his usual easy going nature. I tend to be a problem solver while he lets things ride - not a bad strategy if you have Alzheimers I guess. Initially I tried to talk to him about it but he just brushed it off so now I just occasionally mention 'your memory problem'.
Thanks everyone. My OH is as yet undiagnosed and I still feel he's the kind of person that would be better off not knowing officially. We have talked about his confusion and Capgras Syndrome but have never used the word 'dementia'. I've said before that he says he chooses to "laugh it off" instead of worrying about it. He was annoyed that the doc did a memory test on him last week when he went in about his painful legs
( I wrote to the doc confidentially to fill him in about OH and told him I that I'd held back on using the word dementia with him)
We have to go back for blood test results on Tues and it will be a different doc and apparently my letter hasn't been uploaded onto my husbands record. I don't know what to do for the best now.
( I wrote to the doc confidentially to fill him in about OH and told him I that I'd held back on using the word dementia with him)
We have to go back for blood test results on Tues and it will be a different doc and apparently my letter hasn't been uploaded onto my husbands record. I don't know what to do for the best now.
Well they aught to upload the letter, so hopefully, by the time you get to his next appointment it will have been. Can you get a discreet note to the doctor before your OH is seen?
Dads listened to every word the doctor told him and politely accepted his diagnosis but as soon as we were out the door he told me that the doctors didn't know what they were talking about and he not have dementia. I never mentioned it again although dad did once say that he didn't like the word 'dementia' which I can understand.
Das accepted that he had an age related memory problem. don't think that knowing or not knowing would have made any difference to dad because he forgot about it immediately.
Das accepted that he had an age related memory problem. don't think that knowing or not knowing would have made any difference to dad because he forgot about it immediately.
I never used the word dementia to my OH and no-one else did in my presence. It took a long time to get a diagnosis and then it was in a letter which I didn't tell him about. He referred to his "brain problem" so I used the same phrase. It's such a loaded word so I was glad to be able to avoid it. He's in a care home now so I don't know if the various social workers who have visited him lately (DoL and best interest) or the gp have mentioned it. He never has.
I used the same kind of approach as @Carmenjane. My partner never liked the word Dementia, so everything was just a result of her stroke. She accepted that explanation even if the deterioration was understandably harder to accept.
Thanks for sharing everyone, really helpful. My dilemma was whether to fill the new doctor in or not.
From reading everyones experiences, I have a clearer idea that it will not benefit my OH to have a formal diagnosis - at this time.
Things may change further down the road but for the time being, he isn't particularly disturbed by his memory issues so I don't want to make it worse for him.
I would like some help on how to deal with his phases of Capras Syndrome though. Do you think it would be worth phoning the Alz. Socy to see if I could speak to someone about it? Has anybody done that about their issues, were they helpful?
From reading everyones experiences, I have a clearer idea that it will not benefit my OH to have a formal diagnosis - at this time.
Things may change further down the road but for the time being, he isn't particularly disturbed by his memory issues so I don't want to make it worse for him.
I would like some help on how to deal with his phases of Capras Syndrome though. Do you think it would be worth phoning the Alz. Socy to see if I could speak to someone about it? Has anybody done that about their issues, were they helpful?
Hi @Chocco , I replied further upthread to say that knowing she had dementia didnt benefit my mum, but I would like to point out that having the diagnosis did benefit her indirectly because she was started on donepezil and it opened up doors.
My OH does not have a diagnosis and if it were Alzheimers he could have medication to help boost the brain (like mum had). Although it was OK in the early stages, not having a diagnosis means that those doors to help me care for him are not open. I have no access to a dementia navigator or the Community Mental Health Team and when he went through an aggressive phase I had no help. I cannot access the local dementia hub or other things arranged for people with dementia, I cannot get a blue badge or get council tax disregard for him. At the moment I have been trying to get respite, but most places want a diagnosis and will not accept him without one.
If you can get a diagnosis, go for it.
My OH does not have a diagnosis and if it were Alzheimers he could have medication to help boost the brain (like mum had). Although it was OK in the early stages, not having a diagnosis means that those doors to help me care for him are not open. I have no access to a dementia navigator or the Community Mental Health Team and when he went through an aggressive phase I had no help. I cannot access the local dementia hub or other things arranged for people with dementia, I cannot get a blue badge or get council tax disregard for him. At the moment I have been trying to get respite, but most places want a diagnosis and will not accept him without one.
If you can get a diagnosis, go for it.
@Chocco as @canary says there are benefits to a diagnosis. Although I would definitely say that dad in himself did not benefit from knowing about the dementia (that he never had) he was prescribed donezepil which may or may not have slowed down his alzhiemers although we will never know if it worked or not. He accepted them as memory tablets and took them quite happily.
Also as @canary suggests there are other benefits, blue badge, council tax exemption if they live alone, possibility of attendance allowance and probably a multitude of other useful things.
So, no a diagnosis wasn't helpful for dad because he ignored it but it was helpful to me.
Also as @canary suggests there are other benefits, blue badge, council tax exemption if they live alone, possibility of attendance allowance and probably a multitude of other useful things.
So, no a diagnosis wasn't helpful for dad because he ignored it but it was helpful to me.
