By taking part in research volunteers play a vital role in helping scientists understand more about the complex diseases that cause dementia. This understanding means new ways to diagnose, prevent and treat these diseases can be developed and tested. Without the contribution that volunteers make by taking part in research, progress in dementia research just wouldn’t be made.
Here we provide some information about what you might be asked to do should you volunteer in a dementia research study.
It is important to note that taking part in research it is not a way to get a diagnosis or to find out about your own risk of developing dementia in the future. If you are concerned about any dementia like symptoms you may be experiencing, please speak to your doctor about this. Find more information about dementia diagnosis.
If you have any questions about dementia, or taking part in dementia research and would prefer to speak to someone you can contact our Dementia Research Infoline 0300 111 5111 or firstname.lastname@example.org
Keeping volunteers safe
Before taking part in a research study, you must give informed consent. Before you give consent, you will be told about the research study in depth, what will be involved and given the opportunity to ask questions. This means you can make an informed decision about whether you would like to take part or not. In certain cases where someone living with dementia cannot consent for themselves, a representative may consent on a volunteer’s behalf if they hold lasting power of attorney on health and welfare grounds and believe taking part in research is in the person’s best interests.
Anyone who decides to take part in a research study can withdraw from taking part at any time. Withdrawing from a study would not affect their medical care, or future chances of taking part in other studies in any way.
Before any type of research study can start to recruit volunteers, it must go through a strict ethical approval process. This helps to ensure that the chance of risk or harm to volunteers who take part is minimised. Strict screening assessments and repeated tests during involvement in a clinical research study also help to safeguard the volunteer. These help to ensure the volunteer is a safe and suitable candidate for the study and to measure and monitor possible side effects while they take part.
Online research studies
Many people over the age of 18 without a diagnosis of dementia will be able to take part in online studies, as well as people who are living with dementia. Online studies often need thousands of people to take part. Taking part in this type of study is an easy way to contribute to vital dementia research and can be done in your own time.
Online studies help researchers to investigate:
- how age, lifestyle and health factors increase or decrease our chances of developing dementia.
- changes in memory and thinking as we get older.
- experiences of caring for someone or living with dementia, and how this affects our wellbeing and decision making.
- the effectiveness of different computer-based tests that are used to diagnose dementia.
What might be involved in an online study?
- Filling in questionnaires or surveys, this might just be once, or you may be asked to come back and complete them again in the future.
- Download an app or a game onto your computer, tablet, or mobile phone.
- Sharing information about your diet or the amount of physical activity you are doing.
- Complete tasks and tests that assess your memory and thinking on your computer, tablet, or mobile phone.
A researcher may ask to interview you about a subject they are investigating, like what it’s like to look after someone with dementia or about your experience of the NHS during your diagnosis. Interviews can be done virtually for example over Zoom, over the phone and sometimes in person.
In an interview you may be asked to:
- share your opinion
- share your knowledge or experience
- share ideas you have about improving services.
Taking part in this type of research can highlight the most important outcomes for those directly affected by dementia or help to shape support services and healthcare policy. Usually, interviews will last no more than an hour.
Sometimes as part of a research study you may be asked for a DNA sample. This is usually collected through a saliva sample and can be done in your own home via a postal kit. These tests are used to identify who carries common risk genes for conditions like Alzheimer’s disease. DNA tests are often offered in conjunction with something like a survey, or as a screening tool for future involvement in a treatment trial.
Researchers may use genetic data to understand more about the role our genetics play in the development of dementia, and how they interact with other risk factors like our lifestyle, health, and age. You may not always receive the result of your DNA test, and these results are not a way to check to see whether you will develop dementia in the future. This is because most cases of dementia are not caused by our genetics alone, many other factors such as age and lifestyle also play a role in our overall risk.
Some research studies may ask your permission to link to your health records. These are anonymised details about your ongoing health which are collected by the NHS, such as diagnosis of certain conditions, your prescriptions, and any hospital stays you have. Researchers can use this data to track patterns in population health over time and to help improve patient care and NHS services. They can also be used alongside your ongoing involvement in a research study to track health outcomes over time, for example whether or not in the future you are diagnosed with dementia.
Face to face studies
This type of study is often run at a hospital, or a clinic specially set up to run research. Sometimes face to face studies can involve groups and may be run in a community setting, like a leisure centre. Before you take part in any tests or activities that are part of a study you will be given information about each one, and a chance to ask any questions about the procedures.
Face to face studies help researchers to investigate:
- new methods of diagnosis, like blood tests or brain scans.
- whether a medication is safe and effective for treating dementia (a clinical trial).
- whether a therapy or intervention can help someone living with dementia, or reduce our risk of developing dementia in the future (an intervention).
For clinical trials and intervention studies researchers need to take information from volunteers using various tests at the start of the study. They then repeat these tests during the study and at the end. This allows them to measure any changes in symptoms, health, and wellbeing during involvement in a trial. This helps researchers keep an eye out for side effects but also allows them to see whether treatments are having an effect on the progression of someone’s dementia.
To investigate whether the treatment is what is causing any improvement, these results are compared against a placebo group of volunteers who take part in the same study, who have all of the same tests but do not receive the medication or intervention.
If you are enrolled onto a clinical trial, you will be asked to take part in an intervention. This might involve trying a new diet, exercise regime or testing a new technology or taking a medicine. You will also have to go through screening to check that you are suitable and eligible to take part.
A clinical trial usually takes place over weeks, months and sometimes years. During this period, you will be closely monitored to investigate how the new intervention is affecting you. In drug trials, it’s possible you will be given a dummy drug or placebo. You will not know whether you have the active drug or the placebo, and neither will your doctor. If you experience any significant adverse side-effects as a result of the intervention, this will be closely monitored, and you may be taken off the intervention.
Before you are enrolled onto a study involving a medication or intervention you will usually have to pass through some screening tests. This makes sure that it is safe for you to take part and also that you are a suitable volunteer, for example that you have a risk factor being investigated by the researcher or a certain disease like Alzheimer’s. Many different tests may be involved in screening and the process can be lengthy, but it is vital to make sure the study is conducted properly and that those who take part will be safe to do so.
You may be asked to have a blood test. Blood tests are used in dementia research to:
- see if “markers” in the blood can be used to diagnose dementia in the future.
- make sure it is safe for you to take a new treatment.
- check for risk factors for dementia, like high cholesterol or diabetes.
- measure the levels of a new medicine in your blood, or look for side effects during a clinical trial.
- look at changes overtime in our overall health.
Any abnormal results are usually sent to your GP or another doctor, so that they can follow up with any treatment you may need.
A lumbar puncture can be used to confirm which type of dementia someone has. For example in Alzheimer’s disease they are used to detect the presence of amyloid and tau, the proteins involved in the development of the disease. Sometimes they are used to see if someone has markers of diseases that cause dementia before they have any symptoms, this helps to enrol people into clinical trials where treatments work best when given at the earliest possible stages.
Many people can feel anxious about the thought of having a lumbar puncture. However, they are a safe and regularly used medical procedure. You can read more about the process of having a lumbar puncture and why they are important in this lumbar puncture blog.
There are different types of brain scans involved in dementia research. They are used in research studies to develop more sensitive tests to diagnose dementia, see if an intervention or new medication is changing the progression of someone’s dementia, or causing any side effects.
- Computerized tomography or CT- involves taking a series of x-ray images of the brain. These scans can show overall structural change (shrinkage) of the brain, detect a stroke or changes to large blood vessels in the brain.
- Magnetic resonance imaging or MRI- produces detailed images of the brain to show regional structural changes such as shrinkage to certain lobes, or damage to blood vessels. Functional MRI scans can pick up on protein plaques in the brain which are key features of diseases like Alzheimer’s. The scans are also used to look at blood flow and brain activity. Because this type of scan uses magnets, someone who has a pacemaker fitted is unable to have an MRI.
- Single-Photon Emission Computed Tomography or SPECT- uses a small amount of a radioactive substance which is injected before the scan and a special camera which picks up on the substance to create 3-D pictures. They are used to give a detailed look at blood flow in the brain, and how the brain uses things like glucose.
- Positron Emission Tomography or PET- uses an injected radioactive substance, this attaches to the build-up of proteins in the brain. This can show the build-up of amyloid, a key marker of Alzheimer’s disease. An FDG PET scan is used to see how much glucose there is in the brain, which can indicate how the brain is using energy. These scans are most commonly used in clinical drug trials, to make sure someone is suitable to take part. They can then be used over the course of the trial to see if the medication the volunteer is taking is removing the proteins and preventing further build-up.
Other medical tests (ECG, blood glucose, blood pressure, urine samples)
There are a number of other medical procedures that you may be asked to do either as part of a research study or to verify your health before starting a clinical trial or intervention. These may include:
- ECG to check your heart
- Blood pressure
- Measurements of body weight
- Urine samples
How to take part
The best way to find out which types of studies you can take part in, and then to see what would be involved in any study to are suitable for is to register to Join Dementia Research. Just because you register doesn’t mean you have to take part in any study that you are matched with, it will just let you find out what you could take part in and what may be involved in a study before you decide.