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FAQs for volunteers
Simply click on a question below to reveal the answer.
If you are a researcher, please visit our researchers' page for more FAQs.
How does the service work?
Join Dementia Research is a free service which allows members of the public to register their interest in taking part in dementia research studies. The service matches interested volunteers with researchers who are recruiting participants for their studies. The aim of Join Dementia Research is to make it possible for people to get involved in dementia research.
Every 3.2 minutes someone in the UK develops dementia, but numerous questions about diagnosis, treatments, prevention and best care remain unanswered. Scientists are working hard to answer these, however they need people participating in research to do so. It can take up to 3 years to recruit enough participants for a dementia clinical trial, whereas an entire clinical trial in cancer can be completed in 2.3 years. Only 1% of people who could take part in clinical trials for dementia research do so, but Join Dementia Research is trying to tackle this.
Stats from Dementia Statistics
Join Dementia Research is funded by the Department of Health and Social Care. It is delivered in partnership by the National Institute for Health and Care Research (NIHR) and three Alzheimer's charities: Alzheimer Scotland, Alzheimer's Society and Alzheimer's Research UK.
Anybody over the age of 18 years old can sign up, with or without a dementia diagnosis/memory concerns. Volunteers from all ethnic backgrounds and cultures are needed. Researchers need volunteers without dementia to participate in studies too as control participants. Their results are compared to the results from people who do have the disease. A number of studies are also looking for people with experience of caring for someone with dementia. Please note, you do not necessarily need a computer or internet access to participate.
We would advise that anyone who has a concern about their memory discusses this with their GP. Join Dementia Research is not a service which investigates the cause of people's memory difficulties. If your GP does not think your memory concern is related to dementia, we would encourage you to sign up to Join Dementia Research as a healthy volunteer.
If you have seen your GP and are currently undergoing further memory assessments we would encourage you to sign up to Join Dementia Research. There is an option to select 'I am not aware of my diagnosis' during the registration process. If any of the information you have entered changes or needs updating, you can log into your account online to update your details or alternatively phone one of our charity partners who will help you update them. The more accurate and up to date your details are the more chance you will have of being matched to a suitable study.
No, once you have registered your interest, your details will be regularly checked to see if you are suitable to take part in relevant studies. If you match to a study, you will be contacted in your preferred manner (phone, or email) by someone carrying out the research, who will explain the study to you. You will have the opportunity to ask as many questions as you like. You can decide on a case-by-case basis whether or not you wish to take part in each study you match to.
Join Dementia Research will help reduce the time it takes to find research studies that are suitable for you. It will also help you learn more about research into dementia going on in your local area, region or other parts of the UK. Many participants say that getting involved in research can provide a great sense of pride, purpose, meaning and hope for the future. People find being involved in research a rewarding experience and some of our volunteers have said taking part in research makes them feel they are doing something valuable.
Visit the 'Volunteer stories' page to hear about people's experiences and the 'Why sign up?' page for further information.
Your information is managed by a team of staff based at the National Institute for Health and Care Research (NIHR), working to deliver the service for the Department of Health and Social Care. Only the Join Dementia Research staff at NIHR or agencies working on our behalf, approved researchers, NHS staff and the charity helpdesks registered to use Join Dementia Research will be able to see your information. We also share information with NHS Digital about volunteers approximately twice a year so that we remove volunteers that have passed away.
Approved researchers may be employed by the NHS, commercial organisations or universities, pursuing activities for medical benefit. All researchers are assessed and approved on the basis that their employers are signed up to our terms and conditions, and data processing agreements; and that they are working on ethically approved studies. Researchers only access your information on Join Dementia Research in relation to studies that you match to.
The information on Join Dementia Research is held separately from your medical records kept by your GP and/or your hospital consultant. In some cases, a researcher may also wish to view your medical records. The extra details in your medical records will help them to assess whether they should approach you to think about joining a particular study.
When signing up to Join Dementia Research, you will be asked for your permission for your medical records to be viewed by the relevant researcher(s). Only approved researchers and NHS staff that have been assessed in accordance with “Research in the NHS Human Resource (HR) Good Practice” will be allowed to access your medical records, and those accessing your medical records must follow the NHS Confidentiality Code of Practice and the Data Protection Act 2018. This means that they will only view information from your medical records that is relevant to assess whether you may be suitable to be contacted about a research project, and must keep your information secure. They will not disclose any information from your records to any unauthorised person. Unauthorised disclosure by any researcher of any information from your records is a criminal offence and may lead to their prosecution.
If you have questions or concerns, please view our Volunteer Information Sheet, privacy policy and our policies and procedures.
Join Dementia Research contains lots of different types of studies that you could take part in. Current research includes:
- Cognitive tests
- Genetic tests
- Scans or imaging
- Activities and talking therapies
- Questionnaires
- Online activities
- Lifestyle changes
- Physical tests
- Drug trials
All studies on the service have ethical approval. This means they have been checked to make sure they protect the rights, safety and wellbeing of the people involved. For more information, please visit the ‘About us’ page.
Join Dementia Research is supported by institutions across the UK:
England: NIHR Research Delivery Network’s 15 Regional Networks.
Scotland: NHS Research Scotland Neuroprogressive and Dementia Network.
Wales: Centre for Ageing and Dementia Research (CADR; a Welsh Government funded partnership between Swansea and Bangor Universities). CADR also fund the translation of Join Dementia Research materials into Welsh.
Northern Ireland: Queen’s University Belfast.
Signing up
You will need to include the following information to register:
- Basic information about you (such as name, date of birth)
- Contact information (such as address and telephone number(s)
- Medical information (such as health problems and disabilities)
You may want to collect some of this information beforehand to help speed up your registration, such as contact details for your GP and your NHS number. Once you have registered, you can provide further information, e.g., medication information, to ensure your study matches are well suited to you.
The information that Join Dementia Research collects was agreed in consultation with people living with dementia and their carers, as well as researchers and healthcare professionals.
If you have an online Join Dementia Research account, is a good idea to log into this regularly to see details about any studies you match to. You can then tick the box to let researchers know if you are interested in taking part in their study.
It is really important to make sure your personal details are always up to date. This will allow us to match you with studies more effectively. So if your health or medications change, you move house, or you change your phone number or email address, please update your information as soon as possible.
You can log into your online account to make any changes or alternatively, you can call one of our charity helplines who will help you check and update your details.
There are the three steps to register for the service. It should only take about 10 minutes to complete the basic information.
Step 1
Choose a unique username and password, which allows you to easily access your account in the future.
Step 2
Fill in some basic information about yourself.
Step 3
Confirm your registration via email.
However, we suggest you try to fill in as much information as possible by updating your profile once you login too. This is so we can match you more accurately to studies.
If someone is well enough to consent to register themselves, we always seek their permission, although they are welcome to have assistance from someone in completing the paperwork.
If someone is not able to consent themselves, for example due to dementia, we are able to take the consent of someone who holds power of attorney to make this decision for them. In England and Wales, this is called a Lasting Power of Attorney (LPA), and would need to be on health and welfare grounds. In Scotland, this is called a Welfare Power of Attorney. This same legal framework is not in force in Northern Ireland, so you cannot register on someone else’s behalf if they haven’t given their explicit consent.
You can act as a representative for someone else if you hold the appropriate power of attorney or if the volunteer has given their consent for you to act on their behalf. You will need to register yourself as a user or representative and you can then link the profile of the person on whose behalf you are registering, to your account. Full consent to participate in individual studies will then be sought by the researchers of the study the volunteer matches to.
Join Dementia Research’s main aim is to help people get involved in dementia studies. However we know that many volunteers are keen to take part in a variety of research to help improve healthcare for all. Sometimes researchers investigating other conditions are looking for participants who don’t have that condition and they add their study to Join Dementia Research. By answering this question when you register, you can let researchers know if you are open to hearing about research opportunities that are not just about dementia.
Being matched
If you join via the website, you should receive an email confirmation. If this hasn't arrived, please check your spam folder. You should receive your welcome pack as soon as you verify your email. If you join via one of the Helplines, please allow 14 days for delivery of the welcome pack by post. If your welcome pack still doesn't arrived after 14 days, please contact any of the Helplines and let us know.
As soon as you register you will start being matched to studies. If you are matched to a study, this does not necessarily mean you are eligible to take part. Researchers and NHS staff may check your medical records (if you give permission for them to do so) or talk to you to make sure you are suitable for that particular study.
If you are eligible, you will be contacted by a healthcare professional or a member of the study team carrying out the research, who will explain the study to you. You can choose whether or not to take part in any research study and your choice will not affect you being registered with Join Dementia Research.
Researchers assigned to a study on the service will be able to see information about anyone who matches to their study. They can use the service to identify potential volunteers who match their study criteria. Researchers will be able to see the detailed health and personal information you provided at registration so they can see if you are a definite match. They will also see your contact details so that they can get in touch to talk to you about their study.
You can update your information at any time, and it’s a good idea to do so as soon as possible so that you can continue to be matched to the right studies and so that researchers can get in touch with you. You can log in using your email and password through the website, or call one of the helplines to make these changes. If you have registered on the telephone or via post, you may need to answer some security questions.
This will depend on your circumstances. In some cases, there may not immediately be research studies that you are a suitable match for. Some studies require people with a diagnosis of dementia to take part and others may be interested in those that care for people with dementia. If you have agreed to travel widely to take part in research, or live in a city where a lot of studies are taking place, you are also more likely to be matched to studies. You should check your account regularly and ensure your details are up to date to ensure you don't miss out on any study matches. We are working hard to make sure there are studies for everyone on Join Dementia Research. Our aim is to have something for everyone - regardless of circumstances.
Most studies on Join Dementia Research are looking for either (a) volunteers diagnosed with some form of dementia or mild cognitive impairment or (b) volunteers without dementia. If you told us that you have a memory problem, but no formal dementia diagnosis, you will likely see studies looking for volunteers without dementia. However, we know that there are still a significant number of people in the UK with dementia, who don’t receive a formal diagnosis. This means you may still see studies / be contacted by researchers who are looking for people with dementia.
Don’t worry, you will never be enrolled into a study that is unsuitable. The researcher will always conduct a thorough screening, and only enrol those who meet the study requirements.
If you do have a memory problem, we strongly recommend you contact your General Practitioner to discuss your concerns.
Seeing the studies
Some areas of the UK have more dementia research taking place than others. However, if you are willing to travel you may be able to take part in more studies. When registering, you can express your preferences and willingness to travel in your personal information. You can also update this at a later date by logging into your account or phoning one of the charity helplines.
Studies are very dynamic, and the status of a study can quickly change. If you received an email to alert you to a new study, but can’t see the study in your match list, it is possible that the study has either (a) temporarily suspended or permanently closed or (b) that the criteria used to match you (e.g. distance), has changed. This might be due to finding sufficient volunteers, or receiving a good response that will take time to process. Please don’t worry, you may not have missed out. If the study re-opens the study team will still see you, and you will be able to view the study details in your account.
If you have an online account you can access and update your information by visiting www.joindementiaresearch.nihr.ac.uk and logging in with your email and password.
When you are logged in, you will see your ‘Volunteer Summary’ page. Here, you can update or edit your own volunteer information as well as register someone else and maintain their information for them if you have been given their consent or have Lasting Power of Attorney on health and welfare grounds.
You can also change how researchers get in touch (for example by phone or email) or sign up for newsletters and updates.
If you don’t have an online account, you can update your information by calling one of the helplines, run by our partner charities.
If you are matched to a study, this does not necessarily mean you are eligible to take part. Researchers and NHS staff may check your medical records or talk to you to make sure you are suitable for that particular study.
If you are eligible, you will be contacted by a healthcare professional or a member of the study team carrying out the research, who will explain the study to you.
You can choose whether or not to take part in any research study and your choice will not affect you being registered with Join Dementia Research. You will always be in control.
Join Dementia Research will record which studies you take part in.
You can request a password reset from the website. To do this, please click the forgotten password link and follow the instructions provided. If the reset password does not arrive within five minutes, please check your spam folder. If you continue to experience login problems, please contact one of the Helplines who can issue a password reset.
You can log in to your account to see which studies you are matched to. Please note that you can only do this if you have an online account.
Talking to researchers
When you join the service, you can choose how you'd like to be contacted when registering for the service, for example by phone or email. You can change your preferred method of contact at anytime by logging into your account and changing your answer.
If you have registered as someone with a diagnosis of dementia you may also receive a follow-up call from Alzheimer’s Society helpdesk to check that your record is as complete and accurate as it can be. This will help ensure you are matched to appropriate studies.
You will either be contacted by a member of your healthcare team or a member of the team carrying out the research, who will explain the study to you.
Our approved list of researchers will include those who work within the NHS, universities or within the commercial organisations.
The list below confirms the only commercial organisations approved to use Join Dementia Research.
Re:cognition Health
MAC Clinical Research
Glasgow Memory Clinic
St Pancras Clinical Research
If you have registered as someone with a diagnosis of dementia you may receive a follow-up call from Alzheimer’s Society helpdesk to check that your record is as complete and accurate as it can be. This will help ensure you are matched to appropriate studies.
Yes, you could be contacted by more than one study team. Join Dementia Research will also record which studies you take part in.
This will vary from person to person, as it will depend on which studies are currently open and which people they are looking to take part. If you match to an online study, you may be able to start taking part immediately, for other people it may take some time before they are contacted by a researcher. However, it is important you keep your personal information up to date. The more current information you can provide, the easier it will be for researchers to find out whether you can participate in their study.
Just by signing up you are already helping, by supporting researchers to design future research around those who are interested in taking part, and by ensuring certain areas of the country become more research active.
If you are contacted by a researcher, remember that choosing to get involved in research is an important personal decision and there are different reasons why a study may or may not be one you want to take part in. It is also important to discuss the possible advantages and disadvantages with a doctor or nurse.
Taking part in research
Yes. There are lots of ways to help research. You may be interested, for example, in shaping research questions or raising awareness of research. Please visit getting involved in research in other ways.
You can also help the national dementia charities with their dementia research programme. For example, you can sign up to become a member of the Alzheimer Scotland volunteer group or contact Alzheimer's Research UK and help them decide which research projects to support.
Once you have signed up to Join Dementia Research you may also be eligible to take part in the following registers:
The PROTECT platform
The PROTECT Study is an online project that aims to understand what happens to our brains as we age and why people develop dementia. It is gathering valuable data on how the brain changes with age and investigating which factors in mid-life affect our risk for the disease.
The Scottish Dementia Brain Tissue Bank
This is a registry that takes consent to collect and store brain tissue from people with dementia who live in Scotland after they have died, and is funded by Alzheimer Scotland.
In addition, you can see a full range of health and care research studies taking place across the UK on the NIHR’s Be Part of Research website.
Other registers you may be interested in exploring are:
DementiaPlatform UK Great Minds (UK wide)
Scottish Brain Register (Scotland only)
You can also help the national dementia charities with their dementia research programme. For example, you can sign up to become a member of the Alzheimer's Society's Research Network, the Alzheimer Scotland volunteer group or contact Alzheimer's Research UK to find out about their volunteering opportunities.
We understand that some people are particularly interested in these trial types, and you will be contacted if you match to these studies.
Other questions
Once you’ve signed up to Join Dementia Research, there are a variety of different ways you can choose to hear from us:
- General updates and newsletter
- Study alerts
- Contact with new study teams
It’s up to you how you choose to hear from us. You can use your account to manage your settings, and you can change your settings at any time.
Alternatively, contact our partner charity helplines who can make these changes on your behalf.
If you decide that you no longer wish to remain on Join Dementia Research, please either contact the Join Dementia Research team or contact the Helplines. You can also delete your account by going to 'My Account', scrolling to the bottom of the page, and clicking 'Delete your account'.
Your personal information will be kept in the form of an anonymous record that cannot be traced to you personally. You will then not be contacted about any further studies that use Join Dementia Research. If you have participated in a research study, or have given your details separately to a research team, you may still receive their communications.
When a volunteer/user account is deleted from the Join Dementia Research website, this account and all the information recorded in it (e.g. personal data, healthcare data, and comments) is permanently removed from the database. This means that no registered clinician or researcher user accessing Join Dementia Research can see your information. You will no longer be able to access your account and will not be contacted or matched to research studies.
Despite the deletion of a user account, an audit log retains a record of your previous web history and the information you provided. This will be kept for up to 38 months, and is kept for investigatory purposes only (i.e. if Join Dementia Research receives a complaint or there is a report of suspected suspicious practice). This is to ensure that we can trace back all changes made to any account. Access to the audit log is restricted to the Join Dementia Research Register Manager. A record of all investigations is maintained. Information in the audit log cannot be used or restored to create another account. Where a volunteer participates in a study, their information will be held by that study team, and will be kept in accordance with the relevant legislation.
For general questions or comments, please visit the contact us page. Your suggestions about how we can improve this resource for you are always welcome!
The success of Join Dementia Research relies on as many people as possible to know about the service and register their interest in taking part in research.
There are lots of ways you can help:
- Follow us and share our messages on Facebook and X (formerly Twitter)
- Become a Champion and advocate our work in your local area
- Ask local organisations to display our materials. They are free to order here and slides can be downloaded and displayed on TV screens in waiting rooms.
- If you’re a healthcare professional, check out our toolkit for more ideas about what you can do.
- Got another idea of how you can help? Why not get in touch - comms.jdr@nihr.ac.uk
Yes. Please get in touch with cadr@swansea.ac.uk who can arrange for you to receive printed copies of our materials in the Welsh language.
All research studies sourcing volunteers through Join Dementia Research have ethical approval from an ethics committee or the Health Research Authority.
Drug trials will have been reviewed and approved by the Medicines & Healthcare products Regulatory Agency.
For further information on how clinical studies are managed in the UK please visit NHS Choices' webpage.
The hallmark of Alzheimer's disease is development of plaques and tangles of certain proteins in the brain. The plaques, sometimes called clumps, are made up of a form of protein called amyloid. Amyloid is formed when a larger protein, called Amyloid Precursor Protein (APP), is broken down into smaller pieces.
Some people who have participated in clinical trials may have undergone a positron emission tomography (PET) scan as part of their involvement in the study and, as a result of this, may have been provided with information on whether the scan revealed the presence of amyloid plaques in their brain.
Professor John O'Brien explains more about Amyloid Plaques in this video.
APOE testing is not routinely available on the NHS, as some people may have the APOE4 gene and still never develop the disease. However, some people may be aware of whether they have it if they have taken a private genetic test or been told as part of a previous research study.
Currently, APOE testing can be used in research settings to identify people who may have an increased genetic risk of developing Alzheimer's – these people carry a version of the gene called APOE4. This knowledge helps researchers look for early brain changes in study volunteers and compare the effectiveness of treatments for people with different versions of the APOE gene. Some researchers believe that APOE testing is useful for studying Alzheimer's disease risk in large groups of people, but not for determining any one person's risk.
You can read more about APOE on the Alzheimer's Society website.