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Dementia and Alzheimer's

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My dad has Alzheimer's - Clinical Trial

4 replies

MK1980 · 11/09/2018 09:24

My dad was diagnosed with early onset Alzheimer's 5 years ago and started a new drug last year as part of the trial. There was however a 50% chance that he could have had the Placebo but after the 1st year he was guaranteed the real drug for an additional 2 years.

Last week we had to go to Hammersmith Hospital for some more brain scans and yesterday we were told that he can no longer continue with the trial. He was unable to give his date of birth, address or consent to continue with the trial so he no longer qualifies due to the decline in his cognitive function.

I'm quite disappointed as I feel that we have wasted a year of daily injections and 2 trips to London and now because he is showing worse symptoms of the disease he is on the trial for he cant continue. I know there was no guarantee of anything working but this was the last bit of hope.

I'm trying to focus on the here and now but it is so hard to try not and think what the future holds as I see my mums coping mechanism failing by the day and as primary carer it is difficult for her.

OP posts:
TheGateauIsInTheChateau · 11/09/2018 09:31

Oh love Flowers i’m so sorry to hear this. Everything you went through with the trial... it’s just devastating. Are you getting support anywhere else for you/your mum/ your dad? Has anyone talked about what the future will hold?

MK1980 · 11/09/2018 09:42

We had the local council come out and assess him, as he is only 60 there was no "care" package available for him however my mum is entitled to help as the main carer for respite. So they have offered a care package for a "befriender" type role and someone will take my dad out for 1 day a week to give my mum some respite.

OP posts:
ragged · 11/09/2018 09:44

So he can't switch to the actual drug now?
The actual drug may be useless, anyway, though.

bilbodog · 11/09/2018 09:47

So sorry to hear this. Have you tried to find out if the alzheimers society have any local groups your mum could get in touch with? They might be able to offer more support. I wish your family well.

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