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FAQs for volunteers

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If you are a researcher, please visit our researchers' page for more FAQs.

Signing up

Join Dementia Research makes it easy for people to register their interest in dementia research, so that they can be contacted about relevant research studies. The goal is to make it possible for anyone and everyone who wants to be involved in dementia research to get the chance to do so.

Every 3.2 minutes someone in the UK develops dementia. There are numerous questions about diagnosis, treatments, prevention, and best care for which there are no clear answers yet. Research into dementia will help find these answers.

One of the big difficulties researchers face is finding enough participants for their studies. At the same time, many people are looking for studies to participate in, but don't know where to find them. Join Dementia Research solves this problem by connecting people who want to participate in studies with researchers, to ensure that the right volunteers are recruited for the right study.

  • Scientists have the ideas to tackle dementia, but need people participating in research to help these ideas reach their potential
  • In helping to beat dementia you can provide a positive legacy for future generations
  • Getting involved in research can provide a great sense of pride, purpose and meaning
  • Researchers need to understand the experiences of people affected by dementia to help improve approaches to care and treatment

Research can only make an impact if there are enough people involved; both those who are living with dementia and memory problems, and those who are not. The government and other organisations have increased the amount of funding provided for dementia research, as a result more people are needed to help participate in these new and essential studies. 

Join Dementia Research is a collaborative project, funded by the Department of Health, and coordinated by the National Institute for Health Research (NIHR) and the three national Alzheimer's charities: Alzheimer ScotlandAlzheimer's Society and Alzheimer's Research UK.

Volunteers of all ages are needed, from all ethnic backgrounds and cultures. Anybody over the age of 18 years old can sign up. We also encourage carers, relatives and the families of people with dementia to register.

Join Dementia Research encourages everyone who is interested to register.

Even though the service is primarily aimed at people with dementia, their carers and family members, researchers also need healthy volunteers to participate in studies as controls.

In clinical research studies, controls are people who do not have the disorder being studied. The results from healthy controls are compared to the results from the group being studied.

By registering, you may have the opportunity to take part in some interesting research studies and help advance vital dementia research.

We would advise that anyone who has a concern about their memory discusses this with their GP. Becoming forgetful does not necessarily mean that you have dementia. Many of us notice that our memory becomes less reliable as we get older. It can also be a symptom of stress or depression. If you or your GP do not think your memory problem is related to dementia, we would encourage you to sign up to Join Dementia Research as a healthy volunteer; to do this please answer ‘No’ to the initial question of ‘Do you have a memory problem?’.

Many people with a memory problem are keen to look for opportunities to take part in research. If you have seen your GP and are currently undergoing 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 about yourself changes or needs updating, you can either log into your account online to update your own details or alternatively telephone one of our charity helplines who will be able to update your details for you. The more accurate and up to date your information is, 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 against appropriate studies. If a match is found, you will then be contacted in your preferred manner (by phone, email or letter). Detailed information will then be provided about the study and you will have the opportunity to ask as many questions as you like. You can then decide whether or not you wish to proceed.

Join Dementia Research will help reduce the time it takes to find research studies that interest you. It will also help you learn more about the research in your local area, region or other parts of the UK.

If you do take part in a study, you will have the satisfaction of knowing you could help others and contribute to future insights into dementia and its causes, as well as early diagnosis, better treatment, and quality of care.

Visit the 'Your stories' page to hear about people's experiences and the 'Why sign up?' page for further information.

Join Dementia Research is free to sign up to.   

Your information is managed by a team of staff based at the National Institute for Health Research in the Clinical Research Network Coordinating Centre (NIHR CRNCC), working to deliver for the Department of Health. Only the Join Dementia Research management staff at NIHR CRNCC, approved researchers, NHS staff and the charity Helpdesks registered to use Join Dementia Research will be able to see your information.

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.

View a full list of organisations that are currently recruiting to dementia research studies through Join Dementia Research (updated on 19th May 2016).

Join Dementia Research keeps your personal information private, secure, and confidential. Your information will only be available to the approved researchers and NHS staff who look after the study you have been matched to. 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 1998If you have questions or concerns, please view our Volunteer Infomation Sheet, our privacy and cookies policy, and our policies and procedures. 

No. There are a number of different studies you can take part in. To find out more, go to the next FAQ, 'What sort of research studies could I take part in?'

Join Dementia Research contains lots of different types of studies that you could take part in. The service is designed to match people with appropriate research studies based on their health information and research interests.

Current research ranges from clinical trials of new treatments, to surveys about what works in improving quality of life for people with dementia and their carers. For more information, please visit the 'About the service' page.

There are currently many studies looking for participants. There are studies that work with people in every diagnosis type and stage of dementia, as well as lots of opportunities for healthy volunteers to participate.

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.

You will initially be asked a few basic questions about yourself or the person you would like to register. You may want to collect some information 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 to improve your matching to studies e.g. medication information.

The information 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 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 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)

If you do have a memory problem, you will also be asked to select your specific diagnosis from a list of options.

Most dementia research studies are looking for particular people. Often this can be based on the severity of someone’s dementia. To help ensure you are matched to the right studies, you are asked to describe your or the volunteers symptoms selecting from the four options – Mild / Moderate / Severe / Unknown. As a general guide you will find a description of each of these definitions below:

Mild (Early stage) 
Everyone experiences dementia in their own way but the following symptoms are typical of early stage dementia. Loss of memory for recent events, repeating oneself, becoming slower at grasping new ideas, finding it harder to make decisions and showing signs of confusion. 

Moderate (Middle stage) 
Everyone experiences dementia in their own way but the following symptoms are typical of middle stage dementia. The person will need more support to help them manage their day-to-day living. They may need frequent reminders or help to eat, wash, dress and use the toilet. They are likely to become increasingly forgetful – particularly of names – and may sometimes repeat the same question or phrase over and over. They may also fail to recognise people or confuse them with others. 

Severe (Late stage)
Everyone experiences dementia in their own way but the following symptoms are typical of late stage dementia. Loss of memory may become very pronounced, with the person unable to recognise familiar objects or surroundings or even those closest to them, although there may be sudden flashes of recognition. They will need an increasing amount of help with day to day activities and will gradually become more dependent on others for their care needs. They may also become increasingly frail and may start to shuffle or walk unsteadily.

Please view 'The progression of Alzheimer's disease and other dementias' on Alzheimer's Society's website, which describes these 3 stages in more detail.

There are the three steps to register for the service. It only takes 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 completing the 'Additional Questions' section (Step 4) too. This is so we can match you more accurately to studies.

Yes. You can register for an account on behalf of two people (with given consent), and complete two sets of information. You can also register yourself under the same account.

No, it is your choice whether you register to Join Dementia Research or not. If you decide that you do want to register, you will be asked to provide your consent. Please do read our Volunteer Information Sheet to find out more. But whether you decide to register or not, it will not affect the standard of the healthcare you receive.

Yes, you can register someone else providing that to the best of your knowledge, the person you have registered has not expressed any reluctance to participate in Join Dementia Research and it is your opinion that registration is in their best interest.We recommend that you discuss participation with the participant, where possible.

You will need to register yourself as a user or representative and you can then attach the profile of the person on whose behalf you are registering, to this account. This is possible through the website or by calling one of the Helplines.

If someone matches to a study and is approached by a research team, full consent would be sought by the researchers before anyone took part in their study. That means that it would never be possible for someone to become involved in a particular research study without having properly consented.

 

Being matched

Once you have created your account, you will then be asked to provide some personal information. This includes your name, date of birth, contact details and some basic details about your health. Before you give this information you will be asked to provide your consent for it to be used (see Volunteer Information Sheet). The information will help to find studies that might be suitable for you. 

Researchers can use Join Dementia Research just to check if there are enough people who could take part in their study. This is called a feasibility search. When using it in this way, researchers will only be able to see anonymised data relating to the number of people who fit their study criteria requirements. This information does not identify any individual.

Researchers assigned to a study on the service will be able to see more detailed information. They can use the service to identify potential volunteers who match their study criteria. After an initial search, they will be able to see more detailed information of volunteers.

You can update your information at any time. You only have to log in and provide your unique username 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. There are a number of factors that can affect your likelihood of being approached to take part in a study:

  • Many studies will require people with a diagnosis of dementia to take part; if you have a diagnosis, it is more likely that researchers will contact you.
  • Some studies involve a group of people with dementia and a group of healthy controls. The control group will need to be made up of people who are the same age as the people with dementia. As dementia mostly affects people over the age of 65, if you fall into that age group you are more likely to be contacted sooner. 
  • There will be studies that are interested in recruiting individuals who care for people with dementia.
  • Although dementia usually affects people over the age of 65, we know that the earliest changes can start to happen a decade or more before symptoms set in. In order to monitor these early changes, people over the age of 40 may be invited to take part in observational studies or research aiming to prevent dementia from developing.
  • If you do not have any memory problems, are not a carer for someone with dementia, and are under 40, there may be fewer studies for which you are eligible to take part. However, some research is concerned with public attitudes towards dementia and this is the kind of research that anybody, regardless of age, can participate in.
  • 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 more likely to be matched to studies.

We are working hard to make sure there are studies for everyone on Join Dementia Research. As the service develops there will be many more studies added and, hopefully, something for everyone - regardless of circumstances. Please remember to complete your profile with as much information as possible, and update any changes to your circumstances, to maximise your chances of being recruited to a study. 

Most studies on Join Dementia Research are looking for either a.) volunteers diagnosed with some form of dementia or mild cognitive impairment or b.) healthy 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 healthy volunteers. 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 recruit those who meet the study protocol.

If you do have a memory problem, we strongly recommend you contact your General Practitioner to discuss your concerns.

When you initially register, we only ask a few essential questions. However, after you have completed that initial step and have an account, we recommend that you complete the 'Additional Questions' section. You can do this by clicking the link to 'edit/update information' on your 'Volunteer Summary' page. You can then add further information about your health and preferences that will improve your chances of being matched to an appropriate study.

 

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 within the online form.

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.

You can access your account and update your information page at any time by visiting the home page and logging in with your unique username and password.

If you don’t have a username, please contact the Helplines.

When you are logged in, you will see your ‘Volunteer Summary’ page.
You can update or edit your own volunteer information here, or register 
someone else and maintain their information for them. If you don’t have 
access to a computer, you can also call the Helplines to update 
your information. 

If you tick the box, the research team are aware that you are interested in joining their study. This means they will prioritise you for further checking of your medical records, held by your GP or hospital. If you haven't been contacted it probably means that despite being matched you didn't meet the inclusion criteria, after being checked further. Don't be disheartened, new studies come on to the system every day, so please regularly login and check for your latest matches.

If you are matched to a study, this does not necessarily mean you are 
eligible to take part. Further checking of your medical records may be 
carried out to make sure you are suitable. If you are eligible, you may 
be contacted by the research team, and can then decide whether you 
want to take part or not.

If you joined via the website, you should have received an email confirmation. If this hasn't arrived, please check your spam folder. The email did not contain any personal information, so please do not be concerned. You can download your welcome pack from this email.

If you joined via one of the Helplines, please allow 14 days for delivery of the welcome pack by post. If your welcome pack still hasn't arrived after 14 days, please contact either of the Helplines and let us know.

When you registered you should have been asked to specify who we can and cannot contact, depending on your answers, a confirmation may be sent to both volunteer and representative.

You can request a username reminder, and a password reset from the website. To do this, click the link at the top right-hand corner of the screen, and follow the instructions provided.

Please note that when requested to provide your username and email address, it is very important to enter these correctly. For account security, the system will not tell you if you have entered either incorrectly, but if entered incorrectly you will not receive the reset email.

If the reset email 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 confirm your username and issue a password reset.

Remember, your username is not your email address.

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, letter or email. 

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

The Glasgow Memory Clinic 

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.

After registration, it may be a while before you are contacted by a researcher. However, it is important you keep your study 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. 

Unfortunately there will not always be a suitable research study that you are a suitable match for. This can be understandably disheartening for people keen to take part in research. With more studies launched all the time, the situation can improve.

Having an account on Join Dementia Research does not mean that there will be a study immediately available for which you might be suitable. Now having a nationwide service means that studies can be started much more quickly, and new studies are starting all the time.

Just by signing up you are already helping, by supporting researchers in designing future research around those who are interested in taking part, and by ensuring certain areas of the country become more research active.

Taking part in research

Choosing to get involved in research is an important personal decision. No, you will never have to participate in a study unless you decide it is the right thing for you. It is also important to discuss the possible advantages and disadvantages with a doctor or nurse.  

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 contact us at patient.crndementias@nihr.ac.uk.

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 and help them decide which research projects to support.

It is a legal requirement for research studies to have specific approval to enroll people that lack capacity. If a study has this approval, then someone acting under a Lasting Power of Attorney for Health and Welfare can volunteer a person with dementia who lacks capacity for research, as long as the decision is made in accordance with the person's best interests.

Other questions

You are free to withdraw your information at any time without 
giving a reason. 

If you decide that you no longer wish to remain on Join Dementia 
Research please either contact the Join Dementia Research Manager (see details below) or contact the Helplines

Join Dementia Research Manager:
c/o NIHR CRNCC, Minerva House, 5 Montague House, London SE1 9BB
email: manager.jdr@nihr.ac.uk

Once you do this, all of your identifiable information will be removed and future researchers who are searching the registry will not be able to search for you.

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 twelve 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.

Please visit our policies and procedures for a copy of the full Data Destruction Policy.

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!

Yes. You can request Join Dementia Research materials in Welsh by contacting comms.jdr@nihr.ac.uk.

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), are broken down into smaller pieces.  Some people who have particpated 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.

For further information on Amyloid Plaques, Professor John O'Brien explains more 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 scientists 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.