FAQs for Carers

Carers and the Research Interest Register

What is a carer?
For the purposes of the register, a carer is someone who lives with, is the main contact for, or is nearest relative to the patient.
A carer is not the person who is paid to look after someone such as in a care home or the paid help who may come into someone’s home to carry out personal care tasks.
 
I am a carer – can I be on the register?
Yes. People recruited to the register as carers may be current carers or previously have been carers but are no longer in that role due to bereavement or long term care.
 
Will I have to travel long distances?
No. For recruitment to the register, you will be seen at a location that is convenient to you. Whether you prefer to be seen in your own home or within a clinic in your local hospital or outpatients department is entirely up to you.
 
For participation in studies you can decide in advance if you are willing to travel to a hospital or clinic or it may be that you only want to participate in studies which can be carried out in your home or near to it. That is your choice.
 
What kind of research can I be involved in?
Some studies might look at a non-drug treatment which might well influence the day-to-day mental health of someone with dementia. Some studies involve repeating the same tests at intervals over a long period of time to look for changes which may be related to the onset of dementia.
  
Will I have to participate in all research?
No. When you give consent to be on the register you are not committing yourself to participate in any particular research study. If there was a study for which you might be suitable you would receive an explanation at the time and be asked whether or not you wished to consent. 
 
Refusal does not affect any aspect of treatment for the one you care for. You can enter as many or as few studies as you wish.
 
Will I definitely participate in a study?
No. Having your name on the register does not mean that there will be a study immediately available for which you might be suitable. However, having a register means that studies can be started much more quickly than is the case at the moment.
 
Will I be contacted by lots of researchers?
No. Once on the database you will be only contacted by researchers who have permission to carry out their research projects by an ethics committee. The database will have the ability to see which people are currently in studies so you are not contacted needlessly.
 
Will being on the register change the clinical care of the one I care for?
No. Being on the register is entirely optional and separate from any clinical or social services you might receive.  Clinical care will not be affected in any way because you have opted to go on the register.
 
What happens if I change my mind?
If you change your mind your name will be withdrawn from the register and you will not be contacted to participate in any further studies. This does not affect your clinical care in any way.
 
How do I get registered?
The best way of registering as a carer is by contacting us on 01738 562332 or emailing
[email protected]
 
What happens next?
A member of network staff will be in contact with you by telephone although this may not necessarily be immediately. Someone will arrange to see you to discuss the register, obtain your consent and ask some basic questions.
 
What will happen after I am entered on the register?
Once a research project that is looking for carers approaches the network, then someone will contact you. This may be within a month, 6 months, a year or you may not be contacted at all.
 
If you have agreed that your information is shared with other databases then studies using anonymised data (without your name attached to it) may be developed to look at dementia care within the Scottish population.
 
I’m worried caring for someone with Dementia – can the network help?
We can give you information about how research can improve our understanding of dementia. The network staff can direct you to Alzheimer’s Scotland, who have some good information such as planning for the future etc.
 
Who do I contact?
If you have any queries please do not hesitate to get in touch by phoning 01738 562332 or emailing [email protected]

© 2010, Scottish Dementia Clinical Research Network Hydrant