Dementia treatment in the UK vs Germany -- my story

arunadasi

Thought I'd tell this story as it may help others.
My husband, a German citizen, was diagnosed with dementia. He had to retire early at age 60 and came to live with me in the UK. I ended up as his full-time carer; the dementia got worse and worse over the years.
He was in treatment at the National Hospital for Neurology and Neurosurgery in London, twice as an in-patient, and one of their professors recommended a particular medicine; I was to get it precribed when I returned home
HOwever, it was never prescribed. I was told that his GP could not prescribe it; it must be prescibed by a neurologist, and the surgery made that request. For some reason, however, the prescription never came through, and my husband never got the medication. I did not insist, as I am sceptical about the amount of drugs doctors had been pouring into him anyway, many of which either did not make a difference, or else had unpleasant side effects. Even before we moved to the UK, this was the case: it was as if they were throwing everything at him to see what sticks.

Anyway -- his mobility got so bad he had to go into a care home early in 2011, and because of the costs I moved him to a care home in Germany in mid 2011. By this time his speech was incoherent. He only mumbled; nobody could undrestand a word he spoke. It was like gibberish, and as a result communication came to a standstill. Which resulted in a general decline of his general condition. Frustarting for everyone, but most of all for him. It was very sad, because the man he had been was simply gone. When my daughter came to visit recently she burst into tears the moment she saw him; he was like an old man (though only 68) lost in his own world.

A few months ago his German care home brought in a psychiatrist, who saw him a few times and discussed the case with me. He said he thought my husband had Levy Body Dementia and the best medication for this was ....... (the same medication the UK neurologist had prescribed, but which he never got). Hubby has been on this for a few weeks; it's a patch on his back.

The result is nothing short of miraculous. He is now actually talking to me coherently; about our children and their lives, about places he remembers, about money (he always worries about money!), simply everything. Yesterday we had a visitor and she was astounded about the improvement in him. As a result, too, his entire mood has changed; he's actually smiling now and then, and we have a relationship and communication again.
I'm really looking forward to future developments!

But I've been wondering why we could not get this medication in the UK. As private patients we have to pay for this medicine ourselves and then get it reimbursed. It's quite expensive. I wonder if that was the reason we didn't get it in the UK?

I have not mentioned the name of the medicine as I don't know if it's against MSE rules or not. I'm happy to do so if it's OK.

ticktack_2

So glad to hear your husband is better. :j

Is the medication one of those mentioned on this page at http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=113

If so, I don't think there's any reason not to mention it, assuming you're not selling it

arunadasi

No, it's not mentioned in that list, but I'll name it anyway: it's rivastigmine tartrate, sold under the commercial name Exelon.

ETA: it's on this page of the site you posted: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=147

ticktack_2

arunadasi wrote: »

No, it's not mentioned in that list, but I'll name it anyway: it's rivastigmine tartrate, sold under the commercial name Exelon.

ETA: it's on this page of the site you posted: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=147

That explains the reason your husband didn't receive the medication in the UK. It's not because of cost, it's because it has to be prescribed first by a consultant:

"In the first instance, these drugs can only be prescribed by a consultant. A GP will need to refer the person to a hospital for a specialist assessment. A consultant will carry out a series of tests to assess whether the person is suitable for treatment and will write the first prescription, if appropriate. Subsequent prescriptions may be written by the GP or the consultant."

Your husband had been through the assessment, but for some reason something apparently went wrong when the prescription was requested by the GP practice. It seems to me your husband's GP should have followed this up, and made sure the prescription was obtained. At any rate, it sounds like it was an administrative snarl-up rather than a policy issue.

The National Hospital is a wonderful place. My daughter was treated there (not for Alzheimers). Brilliant doctors, absolutely brilliant.

judebristol

I am so pleased to hear that the medication is working for your husband. My husband had Alzheimers Dementia for 5 years , and he was on Galantamine (Reminyl) and this was a fantastic drug in my opinion, for early onset Dementia. My husband was 56 when he was diagnosed and he passed away in February , age 61. I personally think that Reminyl gave my husband a fantastic boost in life, and it actually stopped working when he went into severe dementia stage 6 in November 2011, when he was admitted to hospital, where he passed away. I am just hoping that all our governments will now put a lot more funds into Dementia research , as this seems to be the new disease that is effecting a lot of people.

arunadasi

Very interesting, judebristol. My husband was on Reminyl quite early in his illness, and it did not help at all.
It just shows that there IS help for dementia.
My husband continues to show improvement -- for the first time in YEARS I am able to communicate. The other day he was telling me about events that happened 22 years ago; he reocgnised famous people on TV (he never even noticed TV before) and he is also getting more demanding towards me! But that is only good.

Mr_Ted

Mmmm the caring profession, its probably beneath the consultant to do such menial tasks as prescribing medication!!!