Challenging common myths about research

Alzheimer’s Society supports cutting-edge research across the UK. These projects are striving to develop new and improved treatments for dementia and ultimately find a cure. Research will beat dementia and clinical trials are vital to making this a reality.

If a new treatment makes it through all the stages of clinical trials, we can be confident it is safe and effective enough to be made available to the public.

It's important that we don't let myths and misconceptions like these prevent people from taking part in vital dementia research. 

Are there already enough volunteers?

Research still needs more volunteers. Many kinds of research cannot take place without vital volunteers and we need you. Research is for everyone, including people with or without dementia as well as those who care for and support people with a diagnosis. 

Do I need to live near a university or hospital to take part?

Living far from research centres does not exclude you from taking part in dementia research. Volunteers are sometimes willing to travel, but there are also many research studies you can do from the comfort of your own home – online or over the phone.

Will my doctor tell me about any research studies that could help me?

At any one time, many research studies might be seeking participants, and your doctors might not know about them. To learn about studies that are looking for participants go to the Join Dementia Research website.

Will I be able to stop in the middle of a research study?

Consenting to take part in a research study is not legally binding. Volunteers have the right to leave any study at any point and you do not have to give a reason why they are doing so.

Will I be able to participate if I have another medical condition?

Even with another condition as well as dementia, you can often participate in research. Your general health, including other conditions, may be recorded in case it makes a difference to the results.  Also, researchers are also looking to understand how different conditions interact with dementia or alter carers' experiences.

Will I be paid travel expenses or compensation for taking part?

All research studies are different. Some may reimburse associated travel costs or provide compensation to participants. Other studies require only your time to take a phone call or complete a task or survey online.

Will I be given a drug that is safe?

Before clinical trials take place, the drugs will have already been through rigorous testing in laboratory conditions before they are approved for testing in people. This is called the ‘preclinical stage’.

Very often drugs tested in clinical trials have already been used to treat other conditions. This is known as ‘drug repurposing’. We will already know a lot about how safe the drug is and the effects it might have.

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

Am I likely to only get the placebo and miss out on the real thing?

Clinical trials often need two groups of volunteers:

• The ‘active’ group: this group will test the active drug or intervention (e.g. taking part in an exercise programme)
• The ‘control’ group: this group will take a dummy drug, known as a ‘placebo’, or do not take part in an intervention

This allows researchers to compare the two groups and understand the true benefit of the drug or intervention.

The control group is vital and equally as important to the study as the active group.

Many trials test new drugs against current ones, so no one misses out. Where there is no current treatment, successful trials often run an extension phase. This is so that people in the placebo group can be offered the active drug for a period after the end of the trial so they can benefit too.

Will I be studied but not looked after? 

Research studies are strictly regulated to ensure that participants are safe and cared for. In the majority of cases, participants find they received excellent care and really enjoyed the experience.