Is there any treatment available in the UK?

[IsleOfPenguinBollards]

A relative in his early 70s had a memory assessment nearly a year ago and scored quite well. Sadly, he’s declined since then. As his symptoms are mainly memory-related (plus a new-found apathy/loss of confidence), I fear he’s in the early stages of Alzheimer’s Disease.

I think that at his next memory assessment, he’s likely to be diagnosed with MCI, although I don’t know what would happen if he had a brain scan or lumbar puncture? Could he be diagnosed with AD already?

Articles about AD often emphasise the importance of early diagnosis. But is there currently any treatment that could help? My relative seems fairly content at the moment, but a diagnosis of dementia would hit him and other family members hard. It only seems worth it if there’s any treatments he could try. There’s a confusing array of articles online about factors which might delay (or speed up) cognitive decline, but some of them have only been tested on mice! Unfortunately, my relative does have Type 2 diabetes, but it seems to be well-controlled.

Healthy living and good sleep is key in slowing any cognitive decline.

Past that, there are some monoclonal antibodies that have shown an impact in slowing decline in some people, but they dont know why some people respond and others dont. The two that are available in the US are Aducanumab (Aduhelm®) and lecanemab (Leqembi®) but I dont know if you can get them on the NHS yet.

I believe there is a drug called aricept prescribed in the UK which slows the progression of alzheimers ( but not vascular dementia), so it is worthwhile getting the diagnosis.

Yes, there are tablets available. In the early stages - Aricept. Later - Memantine. My late mum had no treatment until she moved in with me, saw a different geriatric psychologist and was prescribed the Aricept.

Sometimes, you need to advocate for the patient before anything happens.

Sorry - didn't see your post before I posted. Yes, my mum got Aricept. I don't know whether a GP can prescribe it: a friend in another part of Fife got it for her mum.

My mum's first geriatric specialist merely diagnosed her. It wasn't until she moved in with me and saw a different specialist that she was given the Aricept.

There are 4 treatments licensed in the UK. Both my parents have been diagnosed with Alzheimer's and each was put on a medication- donepezil for dad and memantine for mum.

Getting a formal diagnosis is also needed if you plan to apply for attendance allowance.

In both cases we did delay getting the diagnosis - with mum we thought she would be devastated by it and with dad I could see he had it but it was in Covid so didn't want him to go to any clinics pre the vaccines being rolled out. Within a day or two of each of them being diagnosed they had each forgotten they had been told they had it. One small blessing of a dreadful illness.

I meant to include this link

www.alzheimers.org.uk/about-dementia/treatments/dementia-medication/medication-dementia-symptoms

Aducanumab and lecanemab are indeed not yet licensed here, though t is possible to go on a clinical trial of lecanemab (a family member has been on this for a long time). The evidence that it is useful is weak though, and there can be side effects. See this link, which also mentions aricept (donepezil).

Your relative could be offered non-medication treatment. Another of my family members has been offered a cognitive stimulation class.

Sorry your family is dealing with this.

My Mum is on Donepezil. I really do think it has helped. It made her feel better certainly and it seemed to slow the progression.

I have had two close family members with Alzheimer's, Mum with Donepezil and FIL who had no treatment. His certainly progressed much faster. However, it might have done anyway.

If I get symptoms, I will go and get diagnosed and get medication - I'd rather take the hope that it might help a bit than the certainty that having no medication definitely won't. If that makes sense!

Thank you all. Does anyone know if someone can be diagnosed with dementia after a brain MRI if their symptoms are still mild? Or is it always considered MCI until the cognitive decline reaches a certain point? I think an MCI diagnosis would be easier for my family to cope with.

We were told that it would be MCI until there was moderate to severe impairment in two or more ADLs (activities of daily life). There are basic ADL’s - eating, dressing, bathing, toileting and mobility and instrumental ADL’s - money management, shopping, cooking and medications. They also use the results of the memory and cognitive testing.

My mum was diagnosed via doctor examination only.

Neither of my parents had an MRI before their diagnosis. It was based on the tests at the memory clinic.

I sat in on my mum's memory clinic appointment and was genuinely shocked at the things she no longer knew the words for. A sheet of pictures and she didn't know the word for kangaroo and said the owl was 'a bird but I'm not very good with types of birds'. There were also others but those are the two I really remembered.

With my mum, the clincher was when the doctor pointed to his wristwatch and asked what it was called.

Mum hesitated and then said "a timepiece". Apparently, intelligent people with Alzheimers are good at covering by substituting alternative words where a simpler expression might be expected.

I'll just add that my husband also had to have the test for cognitive ability - after he had an ischaemic stroke. I recall that one of the pics he had to identify was a rhinoceros.

He also had to memorise and later repeat a few words. The one part of the test that he failed - two days after his stroke - was the numeracy test. He was very upset - it knocked his 'score' down to two points below a pass.

A fortnight later, he got a pass. (He had been asked to start at a hundred and to keep taking away 7.) I recall that he was unable to draw a cube.

My relative scored 48/50 at his last memory assessment, but it’s been a shock to see a fairly modest but significant decline in his memory and capabilities over the past year. I think he’s at the MCI stage now. It feels like too much, too soon (he’s only 71). 😔 How did/do you come to terms with it? I’ve always been a worrier and it’s on my mind all the time which isn’t helping anyone.

It's difficult to come to terms with it. All you can do is to take it as it comes, but ensure that you have things like POA in place.

Yes, we do at least have POA in place.

It's hard to come to terms with. But you take each day at a time and try not to time travel - dementia progresses differently in different people and you don't know what the future holds.

My husband has had a diagnosis of something that is an indicator of a high likelihood of dementia in the future but he doesn’t realise that’s the implication so isn’t following up. There is a family history of dementia. He’s still working in an intellectually demanding role and will be devastated to realise he’s at high risk. He’s only 60.

His memory for things he’s not interested in has never been great (I always felt there was an element of CBA about what he’d forget and what he’d keep track of) but it does seem to be getting a bit worse.

I’m trying to work out if there’s any point in getting him to followup now on what he thinks is an unimportant issue?

If cognitive problems become obvious I would get him to find out but that would be when he was becoming aware he has a problem, and if he is getting dementia could still be a few years away.

If there isn’t anything that could or would be done medically at a really early stage there doesn’t seem much point in him having to face the likelihood this early.

Wanted to hear what those further down the path think? My husband loves his job, I don’t believe he would want to retire earlier to have more time to do other things.

@AWorriedWife , your concerns are similar to mine. Your situation is a bit different, however. I suggest you start your own thread, just because not many people will see your post otherwise.

Thanks @IsleOfPenguinBollards I decided to mention it to him, he had the followup checkup they said there didn’t seem to be a problem so hoping all is ok.

Good, that sounds promising 🙂

While people tend to focus on Alzheimer’s because it’s the most well known, there are lots of different types of dementia which respond in different ways to medication. My dad has Lewy Body dementia and he has responded well to medication. The effects won’t last forever but there is a clear improvement a year after diagnosis.
Early diagnosis can help in multiple ways so please encourage them to see a doctor again. If necessary, contact their GP yourself with your concerns and they’ll invite them in for a check up under the guise of a regular MOT.

Hi, mum had the memory tests then had a head scan & only after reviewing the scans the diagnosis of Alzheimers was given, i was just presuming it was dementia all the while until the head scan results where explained to me.

Memantine had a almost miracle affect on my relative with Lewy Body Dementia

for about 12 weeks.

then it was like someone turned off the supply and he went back to how he was before. Think “awakening” film

so nhs is reluctant to prescribe under NICE guidelines for these known reasons-the affect can be very short lived, it’s about a reprieve in a lot of cases. Certainly not slowing progression as such.

I’m glad relative got it- we were able to have a really lovely Christmas celebration with them in their nursing home. And celebrate their birthday with them . They then reverted, got worse and died last year, 10 months later . We looked back on that brief interlude with much comfort during his final awful months and after his death- we have some lovely photos of that Xmas and cherished memories.