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.

We were told that MRI will only pick up some dementias

so if it comes back negative it doesn’t mean they don’t have it - just not detectable or not there at all. That doesn’t necessarily relate either to early or later stages.

my dads scan didn’t detect anything. He did of LBD just 14 months later. Clearly he wa already pretty advanced at time of scan.

These scans are very new, advances happening all time , but still a rough tool ( and I speak as someone who used to work in one of companies who developed one of recent scanning methods and dementia drugs)

I recall that after Mum got her Memantine, she hesitated and said - almost in surprise - my name's [Forename; Married surname]. Until then, she seemed to think that she was still unmarried...though she knew my first name.

I also remember that -after getting the Memantine - I inadvertently swore in front of her and she scolded me by exclaiming my full maiden name...

Hmm..that first sentence is a tadge misleading

Healthy living will indeed be a factor in preventing cognitive decline- but once the disease pathway for dementia occurs there is no evidence, or even known mechanisms for it to have an effect in slowing the disease progression and cognitive decline associated with it . There are also lots of different dementias with different causal mechanisms.

Again good sleep is shown to be preventative in it taking hold … again before illness manifests itself ..but some dementias like Lewy Body Dementia are characterised by their very devastating impact on REM sleep. Tell my dad ( or his carers) that he needed good sleep would be a particularly stupid thing … it was the very impact on REM sleep that led to his obvious symptoms. He had excellent sleep prior to the disease for 80 plus years ( aside of during the blitz)

and you didn’t mention all these …

• Oddly being bilingual shows enormous protective mechanism for alzeimers - study published last week. Thought to be related to ( in my words) these language neurons creating spare neuron capacity to cope with decline elsewhere in neurons.

• social isolation and loneliness now known to have a massive factor (studies state increases risk by 60%)

• and loss of sight or hearing ( 10% of Alzheimer’s related to hearing loss). We don’t know if that’s linked to social isolation that would come from sense loss though. ked to social isolation that would come from sense loss though.

And then there’s the vey odd flip side : there are studies that show not all people with even advanced Alzheimer’s dementia ever show symptoms. One study on nuns who left their brains to research en mass! From this, and their study of this cohort over 15 years when their subjects were alive looking at lifestyle, showed “mental resilience” generally is key to minimising the impact of platelet development manifesting in symptoms of dementia. It was# also indicated that “early language ability “ was protective. One nun had some of the most advanced disease in the brain bioscopy ( did age 101) and had never shown any signs of cognitive decline. But again, this is preventing over a lifetime, not a cure once cognitive decline manifest itself

but this is just Alzheimer’s. And it’s all about acting before this disease manifest itself.

Yep, you mention drugs approved. More in CT phases ( including others from my ex company that makes one of drugs you name ) Very early days despite money and resources pharma throwing at it. Think like how it took 25-30 years to develop a regime of drugs to treat HIV/AIDS and reduce viral load to almost negligible amounts we can now achieve. It’s very hopeful for the future… but we’re a long way off other than making a short term reprieve for a small group of patients . hence why most patients won’t get it offered.

A tangent to your main question OP

You say “but a diagnosis of dementia would hit him and other family members hard. ”

I struggled a lot with this attitude with my Dad.his partner held this view. We (siblings and partner, not step mum or married ) were told to not tell Dad. We didn’t out of courtesy to her .

but bloody hell it got so difficult. Dad knew something wasn’t right. He wanted to go home. He was sectioned and under deprivation of liberty. Rightly so as he was violent and agressive with delusions and hallucinations. In his calmer times, and closer to his death he couldn’t understand why he wasn’t at home and why he couldn’t leave. We had to play mental gymnastics with him around “ being poorly” … but he knew it was bullshit. He was afraid of dying in the nursing home… of dying at all … he was depressed by thought he was being kept and couldn’t go home ever

compared to that to what would have happened if he’d been given diagnosis of cancer. At some point he’d have been told it was terminal, how long he likely had. He’d have been given a chance to process his illness and death. Hopefully with support of professionals like macmillans or a hospice. For us to have times to memories and thoughts on a life well lived. For him to come to terms with his death and actually talk about his funeral ( we had to guess in end ) and to frankly do a better job on his will ( todo with trusts which is a mess). My mum and both ILs were given this opportunity and we and they benefitted free m actsully being able to say our slow goodbyes over period of weeks

we never got that chance with dad. We lied to him. Pretended it was ok, or just never gave him straight answers. I am still saddened by this.

yes, it is a massive shock to anyone to be told hey have a terminal illness especially one which could take years, and lad to such devastation. But dementia shouldn’t be singled out as so bad that you hide it imho. The deceit and elaborate jumping through hops is so difficult, and I really don’t think dad was better off in any way at all not knowing.

I wasn’t talking about lying and certainly not indefinitely. My relative knows he’s forgetting things and getting confused, but believes (or wants to believe) that this is normal ageing. He was so relieved when he scored well enough in his memory assessment to avoid a diagnosis of MCI, let alone dementia. He has since declined, but isn’t keen to have another assessment.

Healthy living will indeed be a factor in preventing cognitive decline- but once the disease pathway for dementia occurs there is no evidence, or even known mechanisms for it to have an effect in slowing the disease progression and cognitive decline associated with it . There are also lots of different dementias with different causal mechanisms.

I’ve read this (and also a book by Dean and Ayesha Sherzai claiming the opposite). But I’m not sure what to believe. It does seem that there are factors which can make dementia progress more quickly, so it would make sense if there were also ways of slowing it down.

There are many anecdotes of dementia sufferers declining more rapidly during lockdown, possibly due to the lack of social interaction and outdoor exercise. On the other hand, I’ve read that exercise causes the body to release the hormone, irisin, which is thought to be neuroprotective and may even reduce the build-up of amyloid-β in the brain.

My mother's specialist said advances in PET scans (developed to find cancer) have advanced so much in recent years they now use it for dementia. Something about the brain and cancers use glucose - so if on a pet scan the brain is not using glucose (after an injection) that's how they tell which parts are not working properly.