Caring for Me and You
Frequently Asked Questions (FAQs)
General
Why was Caring for Me and You created?
Caring for someone with a dementia can be very rewarding but it can also be very stressful and frustrating and can result in anxiety or depression in carers and in people with dementia.
It is important that carers look after their own needs as well as the person they care for.
This programme has been designed by the Alzheimer’s Society and Oxford Health NHS Trust to find out
whether an online education and information package about dementia or computerized Cognitive Behavioural Therapy (cCBT) with or without telephone support,
is effective in helping improve the mood of people caring for individuals with dementia.
What is the online education and information package?
Information groups or leaflets are often used by NHS memory clinics to provide carers with knowledge of dementia and different types of support.
We have developed some information about dementia and aspects of caring which carers have said they find helpful. It has been put into a learning package
which is available on the internet, so that related topics are easy to find and it provides links to sources of support and information which may be useful.
What is CBT?
Cognitive Behaviour Therapy (CBT) is recommended in the UK by the National Institute for Clinical Excellence.
CBT has a practical emphasis, and is easy to understand. Its general principle is that our thoughts,
feelings and behaviour affect one another and it is possible to improve your mood by understanding
how you think and do things by trying out new approaches. CBT sets out clear steps to help you do this.
What is cCBT?
cCbt is a way of making CBT available via a computer, with internet access. It is used in many NHS services as a treatment for anxiety, depression and other difficulties.
This programme has been designed specifically for carers of people with dementia and allows carers to receive CBT without attending a clinic.
It may be more convenient for some people in a caring role to be alone to do things at a time and place of their choosing.
This project is investigating how helpful it is.
Is this programme right for me?
This programme is suitable for people who are caring for someone with a diagnosis of a dementia and are experiencing mild or moderate levels of anxiety or depression. You also need to be over the age of 18, living in the UK, be comfortable with the English language and have the ability to use a computer with internet access.
How long is the programme and do I have to do any homework?
There are 20 sessions in total and you have a period of 26 weeks to access the materials online and complete the sessions. As a guide, each session takes approximately 20 minutes to complete – some may take you slightly longer or shorter. We suggest that you try to log in regularly and aim to complete one session per week.
If you have been allocated to the cognitive therapy arm, you will also be encouraged to practise the techniques that
you learn in the sessions, between each session - you can access all of the materials in the ‘My Therapy’ section on the main page.
CBT or cCBT is most effective in reducing negative feelings when people participate fully, practise
the techniques and complete the homework activities between sessions.
Those participants allocated to the cognitive behavioural therapy with telephone support arm will also receive up to 10 telephone calls over the 26 weeks to assist you as you work through the materials.
Where can I find the Particpant Information Sheet?
For further information about the study, you can see the Participant Information Sheet (PIS) here.
Where can I find general participant information leaflets about research?
Further information is available from the Association of Research Ethics via the AREC website.
Why do I need to complete a consent form?
The consent form is an official legal document that all participants who take part in research are asked to complete. The consent form indicates that you understand the purpose, aims and the details of your involvement in the study if you were to take part. By signing the consent form you are confirming you understand this information and you agree to take part in the study. This does not mean you cannot change your mind at any point and choose to withdraw. If you feel that you do not fully understand any of the information provided to you before you sign the consent form, you can check the Alzheimer’s Society website or contact the number provided under “Further Information” on the Participant Information Sheet.
Why might I not be eligible?
As the Caring for Me and You programme is a research trial and not a standard treatment programme offered by the NHS there are inclusion criteria
for taking part in the trial. For these reasons if you are living outside of the UK, under the age of 18, currently receiving other psychological
therapies or treatments for substance misuse disorders or do not meet the diagnostic criteria for mild/moderate anxiety or depression then you
are not able to participate in the trial. However, if you register and do not meet the inclusion criteria you will have access to the online education and information package about caring for people with dementia.
Why am I asked to fill in so many questionnaires?
It is important to the study that all participants are assessed on a number of questionnaires to give researchers an idea of how the programme is affecting different areas of participants’ wellbeing. By completing all the questionnaires as honestly as possible, we can have an accurate reflection of how the programme is helping or not. Some of the questionnaires also measure scores related to psychological wellbeing and levels of distress experienced by participants during the trial. In the situation where participants experience increased levels of distress during the trial, they will be contacted by a member of the programme and provided with details of support services that can be accessed. The participants’ GP will also be advised of the increased scores.
When will I be asked to complete questionnaires?
You will be asked to complete questionnaires online when you sign up for the project, at 12 weeks and at 26 weeks.
You will be sent email reminders if you have not completed them.
It is very important that you answer the questionnaires at these points as the anonymous data collected from your answers is used for the research project.
Please fill in these questionnaires regardless of how many sessions you have completed at that point -
whether you have completed just one session, or several sessions or perhaps all twenty sessions at the 12 week or 26 week point, your input on the questionnaires
is really valuable for the study.
You will also be asked to complete a short questionnaire every day that you log on. You will only have
to complete this questionnaire once in 24 hour period, so if you complete two sessions in one day you will only complete this questionnaire once.
This is used to monitor your psychological wellbeing while you are participating in the trial.
Who will see my answer to the questionnaires and what I write as part of my modules?
Your answers to the questionnaires and what you write in your modules will remain confidential and will be kept securely in line with Data Protection principles and compliant with the Data Protection Act (1998). The study database will not include your name, just a study number. During the study we will keep a separate secure list linking your name, study number and contact details, so that we can get in touch to offer you help if that is needed. However, once you have completed the study, your data will be completely anonymised and it will not be possible to identify you. The data will only be available to the study team for analysis.
During the online sessions you will be asked to rate how you are feeling and if there is an increase in the amount of distress you are experiencing an automatic alert will be sent to the study team advising us of this. We will then send you an email to arrange a time to talk to us about the increased score and support services that may be helpful for you to access. We will also write to your GP about the increased score, as they will know more about your local healthcare arrangements. A copy of the letter we send your GP is available on request.
Are audio and non-audio modules very different?
The content in both the audio and the non-audio channels are the same. In the audio modules you will also be able to listen to the materials, whereas in the non-audio modules you will only be able read the materials. Choose the type of module that best suits your style of learning. When registering your account you will be given the option to sample both the audio and non-audio modules. We recommend that you stay with the same type of module through the programme, but you can change if you wish to (see below).
What happens if I change from non-audio to audio and vice-versa?
If you start using the programme on the audio setting and change to the non-audio modules it will take you to back to the beginning of the programme. If you then switch back from non-audio to audio you can pick up from where you left off on the audio modules and vice versa.
Can I complete more than one module each time I log in?
Yes, you can complete more than one module at each log in session. Participants can complete the programme at their own pace to fit in with their other responsibilities as long as it is completed within the 26 week period. However, it is recommended that participants complete one or two modules a week in order to benefit best from the programme. This will give you an opportunity to reflect on what you have learned from each module and carry out some of the homework tasks.
What will happen if I don’t manage to finish a session in one go?
If you need to stop before you complete a whole module and log out or close down the module that you are working on, your work will be saved. When you do log on again or re-open the module, a box will appear which will ask you “Would you like to resume where you left off?” If you click “yes” you will be directed to the point at which you stopped last time, and if you click “no” you will be redirected to the start of that module.
What is the 'My Therapy' section and how can I use it?
The My Therapy section is only accessible to participants on one of the cognitive behaviour therapy arms.
The ‘My Therapy’ tab contains material designed to support your journey through the programme and to help you
plan homework tasks. After every session you will be provided with a summary.
Any materials created from the answers you have given in the session will also be stored in the My Therapy
section as well as blank copies of all the materials used for you to print out and use at any time.
You can also save your work onto your PC to refer to at a later time.
To save the documents that are Word documents, click 'enable editing' > 'file' > 'save as'. The links that come up as PDFs will open in a new tab on Chrome and you will be able to save these to your computer by clicking on the save icon in the bottom right hand corner.
Can I change answers I gave during the CBT sessions?
You can go back and change text you type in and answers in the dropdown boxes. Sometimes this information is used to create the materials in the ‘My Therapy’
and they will also change. The changes will also appear in any future sessions that ask you to review your progress. There are no right or wrong answers so we would generally recommend that you keep your initial thoughts or responses to the questions.
You will be able to print out and add anything to the ‘My therapy’ materials, after the session.
In Session 3, if the question you specifically want to change is related to ranking the four most common emotions felt by carers, you will have the chance to review this choice again in Session 5.
You will still get the opportunity to consider all four emotions throughout the programme, starting with the one you rated as most important.
My computer crashed during a module. What should I do?
If your computer crashes for any reason while you are completing a session, the programme may not have been able to save your progress. Therefore, we recommend you log back in as soon as you are able to turn on your computer. You may have to re-do that particular session if your progress has not been saved.
Can I access materials after I have finished the course?
You can access the materials for the full 26 weeks, regardless of when you finish the course. For example, if you complete all the sessions by week 18,
you will still be able to access them for a further 8 weeks until the 26 weeks has passed since you first registered.
It may be helpful to print the materials off or save them to your computer as you go along, to use once the trial has finished.
Can I access materials after 26 weeks?
No, you will no longer be able to access the materials after 26 weeks has passed. If you are still feeling like you need help with some of the
issues discussed and you are no longer able to access the programme materials,
then please see your GP or call NHS 111 for England (24 hours) on 111, NHS 24 for Scotland (24 hours) on 111 or NHS Direct for Wales (24 hours) on 0845 46 47.
What happens if I don’t finish on time?
If you find that you are too busy or have other situations that take priority then just complete as much of the course as you can.
You can do as much or as little as you like in each session and as many session as you like each week, up to 26 weeks. The answers
you provide to the research questionnaire at 12 and 26 weeks will still be valuable to the research team, however much of the course you manage to complete.
Why am I still receiving email reminders to log in when I have finished the programme?
If you have completed all your sessions before the end of the 26 week period, and do not log into the system for some time, you may still receive emails encouraging you to log in. Sometimes these emails will remind you to complete important questionnaires we require for the research trial, so it is important to log in if you are reminded to check if this is the case.
What happens after the trial?
When the trial finishes, even if you have not completed all 20 sessions, your access to the online materials will stop.
All of the data collected in the trial will be analysed by the research team and the findings will be published.
Individual participant’s details will not be published; and your data will remain anonymous and confidential.
What if I have a concern or complaint about the study?
If you have a concern or complaint about the study then you can report these by clicking on the ‘here’ in the Concerns and Complaints box on the right hand side of the page:
You can then follow the instructions in the box.
How do I withdraw from the study?
If you no longer wish to participate in the trial you can discontinue by clicking on the same link as above in ‘Concerns or complaints’ and then clicking on the ‘Discontinue trial’ button. You will then be withdrawn from the study and will no longer be able to access the materials. You will receive an email to confirm that you have withdrawn from the study. We would welcome your feedback if you do decide to withdraw from the study and a space is provided on the discontinue page for you to write to us if you wish to.
Care and support
Where can I get more support/call someone after hours?
Please note that the Caring for Me and You website is not actively monitored.
If you feel that you need more support then you should contact your GP as soon as you can.
They are best placed to know what help is available to you in your area.
If you feel you need urgent support you can also contact NHS 111 for England (24 hours) on 111, NHS 24 for Scotland (24 hours) on 111,
NHS Direct for Wales (24 hours) on 0845 46 47, the Samaritans on 08457 909090 or your local Accident and Emergency department.
Other support services are also listed on the ‘Need Help?’ section of this website.
Where can I get some practical help and advice?
If you need some more practical support such as information on dressing, bathing or different types of care then please look at the Alzheimer's Society web pages
as there is a lot of useful guidance there:
http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200354 or speak to your GP or local care team who will be able to advise you about the support available in your area.
Technical
If you are experiencing any technical difficulties with the programme, please do read through the advice below. If this information does not help to resolve the technical problems, please contact us at caringformeandyou@alzheimers.org.uk
What technical equipment do I need to use the programme?
You can access the programme through a PC or a laptop. The programme is not configured to run on Apple machines or devices, and has not been optimised for tablets or smart phones.
What browser do I need to use the programme?
The programme only works if you use Firefox 
or Google Chrome 
browsers.
Internet Explorer 
is not compatible with the programme so please do not use this. If you only have internet explorer you need to download one of the other browsers following these links before you start:
https://www.google.com/intl/en_uk/chrome/browser/
http://www.mozilla.org/en-US/firefox/new/
I can’t see the graphics
Download version 10 or higher of Adobe Flash Player to be able to see graphics. You can download it free here.
I can’t hear the audio
If you are listening to the audio version of the programme and need to turn the volume up or down you can do this by right clicking on the speaker at the bottom
right hand side of your page:
Click the ‘open volume control’ and you can adjust the sound settings to what suits you.
If you do not have a speaker icon at the bottom of your page, you can adjust the volume by going to ‘Control’ panel’ > ‘Sound and Audio Devices’ > adjust the volume to what suits you.
Printing off summary sheets (only applicable to participants allocated to one of the cognitive behavioural therapy arms)
To print off the summary sheets from the sessions you have completed click on the ‘My Therapy’ tab at the top of the page:
Click on the session that you have completed and it should automatically download:
You can the open the word or pdf document and print as normal
The session is stuck on ‘Retrieving data from previous sessions’ (only applicable to participants allocated to one of the cognitive behaviour therapy arms)
Occasionally, if you are accessing the materials, it can take a bit of time for the sessions to retrieve the data from your previous sessions. This may be because you are in an area with a slow internet connection. You can try closing down the session and re-opening it (you will be asked whether you want to start the session from where you left off, click ‘yes’) and if that doesn’t work try logging out and logging back in again 10-15min later.
I have filled in my answers/ratings but the next screen or session displays my answers as ‘null’/gives different answers to what I provided
Occasionally, if you have been inactive on the programme or left the screen you are working on for more than 30 minutes, when you come back to the programme, the data which you have provided may not display correctly – this is when you may see ‘null’ or different answers to what you entered. We advise that if you do experience this problem, you should log out of the programme and then log back in again a few minutes later. This should resolve the issue and the answers/ratings you provided should now appear correctly.
What do I do if I’m not getting any emails?
The Alzheimer's Society will send you emails at various points during the programme, to remind you to log on, on completion of sessions, and when questionnaires need to be completed. The emails will be from the caringformeandyou@alzheimers.org.uk. Please check the junk folder in your email account. Sometimes if you have high security settings on your account any email addresses that either you or your email provider doesn’t recognise will be automatically sent there. To avoid these emails going into your junk folder, you may need to add a new contact in your email programme, with the above email address as the contact email address.
If you have been allocated to the cognitive behavioural therapy arm with telephone support, or if your scores on the questionnaire you complete at each log-in indicate that you are experiencing increased levels of distress, you will also receive emails directly from one of the telephone support workers who form part of the study team. These emails will be from oxfordhealth.nhs.uk.
Can I change my email address once I have registered and started the programme?
No, you need to use the same email address you registered with, throughout the programme. You will need this same email address to log in each time and access
the materials. Email reminders and prompts will also be sent to this same email address while you are part of the programme.
What do I do if I have forgotten my password and cannot log on, or if I want to reset my password?
Click on the ‘forgot my password’ link on the login page (it is underneath the box where you would enter your password).
You will then need to enter your email address where you will be sent an email with the password clue you created at the beginning.
If you still can’t remember your password then the email gives you an option to reset it.
The sessions aren't opening - what is wrong?
You need to allow pop ups on the Caring for Me website (www.caringformeandyou.org.uk) to open the sessions.
If you are using Firefox as your browser, you may get an automatic message about allowing pop-ups. However, if you don't get this message, and if you are having problems opening the sessions, then please follow this link for guidance on how to allow pop-ups - Allow pop-ups in Firefox.
If you are using Google Chrome as your browser, you won't get an automatic message and will need to allow pop-ups by changing the settings. Please follow this link for guidance - Allow pop-ups in Google Chrome.
If you have allowed pop-ups and are still having difficulties accessing the sessions or see a page which says "If you are finished viewing this resource, click here to return to the course page", then it may be that the session screen is hidden. The modules should open in 2 separate windows - if you are seeing just one screen and the other is hidden, you can see if you can access this separate window by holding down the Alt key on your key board and pressing the Tab key continually to move through all the application windows you have open. Amongst those, you should see an icon which has the Moodle orange M, with a mortar board on it and this is the session screen.
