A defining moment for dementia research – and how you could help

It’s an exciting time for the Join Dementia Research helpdesk, run by Alzheimer’s Society.

The news that two new medications – lecanemab and donanemab – can slow down the progression of Alzheimer’s disease has given people a new sense of hope.

We have been extremely busy with calls about how to get involved in medical trials. 

There are many unanswered questions about dementia, and finding answers relies on people volunteering to take part in research.

The recent trials testing lecanemab and donanemab have now ended, but other drug trials are taking place in the UK.

People continue to find out how they can get involved in vital dementia research through our helpdesk. 

Many people find it satisfying to take part in research, knowing they’re contributing to future insights into dementia and its causes, as well as earlier diagnosis and better treatments.

However, some people are put off from finding out more about drug trials because of doubts and misunderstandings.

Is it safe? 

When we talk about clinical trials, people often jump to the idea of brand-new, mystery drugs.

Sometimes drugs are new, but they’re never untested. 

Before clinical trials take place, drugs will have already been through rigorous testing in laboratory conditions.

When first testing them in people, researchers often increase the dose gradually and monitor participants very closely for side effects to make sure they’re safe. 

Drugs tested in clinical trials have often already been used to treat other conditions.

Researchers will already know a lot about how safe these drugs are and the effects they might have.

Of course all clinical trials have risks, but careful monitoring keeps these to a minimum. 

What if I get a placebo?

Clinical trials often need two groups of volunteers: 

• ‘Active’ group members take the drug or do the activity that’s being tested. 
• ‘Control’ group members take a placebo or ‘dummy drug’, or they don’t take part in the activity.

The ‘placebo effect’ is where people appear to benefit temporarily, even if they’re only getting a placebo.

It’s important to compare drugs with placebos so researchers can tell whether any difference they make is down to more than the placebo effect.

The control group is just as important to the study as the active group.

If researchers have nothing to compare a drug to, they can’t fully understand its impact.

Without being confident that it’s really working, it’s difficult to get further funding to continue testing a drug. 

In some cases, if it looks like a treatment works, people in the control group may be offered it at the end of the trial too.

Is it too early for me? 

If you’re in the early stages of dementia or your symptoms are very mild, you could still take part in research. 

The problems that happen in the brains of people with dementia – such as a build-up of specific proteins – cause brain cells to die.

These cells can’t grow back, so treatments are needed to stop the damage before too many brain cells are lost. 

This means researchers need people in the early stages of dementia to take part in trials, so they can learn how to tackle these problems before the symptoms get worse. 

So much more to do 

The new drugs making headlines that can slow down early Alzheimer’s disease are just the beginning.

Medical trials have shown what research is capable of, but more volunteers are needed for vital dementia research.

Other drugs will come through that hopefully have fewer side effects, are more practical to use and can slow down the diseases that cause dementia, or possibly stop them in their tracks.