Advice

What can help mixed feelings over news about the latest Alzheimer’s medications?

Breakthroughs in dementia research are excellent news. But it can feel unfair if a new treatment isn’t going to help you. 

Most people who already have a dementia diagnosis are unlikely to benefit from the latest Alzheimer’s medications – lecanemab and donanemab.

Reality check 

We all know that headlines can exaggerate how good or bad things are. We want to believe stories that call these medications ‘wonder drugs’, but the reality is more complicated. 

These latest medications are a really important step forward. However, so far we’ve only seen their effects during the early stages of Alzheimer’s. 

We’ll have to wait and see how well they delay the more advanced symptoms of dementia, or help people to live independently for longer. 

Whether lecanemab and donanemab will be available on the NHS is yet another complication. 

It can come as a blow to realise you won’t benefit from a new treatment. For some, it means once again facing the fact that they’re living with a terminal diagnosis. 

Meaning and hope 

People find meaning and hope in many different ways, but it often includes reaching out to others, staying active and expressing ourselves. 

Get whatever support you can to live as well and as independently as you can for as long as possible.

Helping to make things better for future generations is one way to fight feelings of helplessness. Many things have improved thanks to work done by people with dementia.

Your tips for dealing with ‘wonder drug’ news 

Dunroamin says,

‘As a realist, I do not feel frustration or despondent about the availability of these drugs. I have come to terms with my Alzheimer’s. 

‘I am still me, just different – and learning to adjust to the lessening positives I still have.’

Diana, from Horsham Rusty Brains DV group, says,

‘The fact that the new drugs are not really going to do much for us, in my view, doesn’t matter at all.

We are where we are, and I for one am continuing to have a decent life. I’m managing to live on my own. 

‘I do need help sometimes, but I don’t think any new drug is going to make life any better and my life is pretty damn good at the moment.’

David Joseph says,

‘This may sound a bit off-the-wall and ironic, but bitter humour helps bittersweet feelings. 

‘My wife once had a computer fix-it guy who inveighed against getting the latest software, “because of all the bugs and unforeseen problems that often occur.” 

‘Research holds out hope, but long-term effects are as yet unknown.’

Emily E says,

‘I apply for trials of new drugs, in the hope that I might get access to something that will later be proven to be effective. 

‘It’s very hit or miss, as there is no guarantee that you will get the actual drug and not the placebo they have to use alongside. There is a risk that it has side effects, is unpleasant or even dangerous… and it might simply not make any difference. 

But it does feel worthwhile to contribute to the research.’