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Does knowing they have dementia help PWD?

Chocco

Registered User
Aug 9, 2021
58
0
Hi, can you tell me your experience of your OH being diagnosed with dementia - was it helpful to them or did it have a detrimental effect?
 

Old Flopsy

Registered User
Sep 12, 2019
312
0
Hi @Chocco when my OH was diagnosed he got a letter informing him. He was furious and said he was 'going to sort that doctor out' as he was convinced there was nothing wrong with him. Fortunately he didn't confront the doctor, and we never discussed it again!
 

mikeb2

Registered User
May 17, 2022
26
0
Must admit my Dr stated I got MCI and since then I have become really obsessed with trying to memorise the memory test even taking notes ready for the main test, very anxious, so for me I would had preferred she did not tell
 

Thethirdmrsc

Registered User
Apr 4, 2018
660
0
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.
 

sapphire turner

Registered User
Jan 14, 2022
74
0
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!
 

canary

Registered User
Feb 25, 2014
18,528
0
South coast
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.
 

jennifer1967

Registered User
Mar 15, 2020
11,877
0
Southampton
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.
 

Sue741215

Registered User
Oct 18, 2019
90
0
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'.
 

Chocco

Registered User
Aug 9, 2021
58
0
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.
 

Bod

Registered User
Aug 30, 2013
1,547
0
My father knew and understood he had Alzheimers, he also knew that he had recovered from it!
Then he forgot all about it.

Bod
 

canary

Registered User
Feb 25, 2014
18,528
0
South coast
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?
 

Duggies-girl

Registered User
Sep 6, 2017
3,299
0
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.
 

Carmenjane

Registered User
Mar 17, 2022
73
0
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.
 

nae sporran

Volunteer Host
Oct 29, 2014
9,139
0
Bristol
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.
 

Chocco

Registered User
Aug 9, 2021
58
0
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?
 

canary

Registered User
Feb 25, 2014
18,528
0
South coast
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.
 

Chocco

Registered User
Aug 9, 2021
58
0
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.
Ah ok @canary, I see what you mean - I'll take that on board, thank you!
 

Duggies-girl

Registered User
Sep 6, 2017
3,299
0
@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.