Frequently Asked Questions

Who is eligible?
 
The Scottish Dementia Clinical Research Network (SDCRN) welcomes any referrals of people who might be willing to consent to participate in a research project. 
 
You should have a diagnosis of dementia or a related disorder such as mild cognitive impairment with a diagnosis having been made by a health care professional.  There is no restriction on type of dementia.  There is no restriction on severity or co-morbidity (any other illnesses you may have as well as dementia).
 
You do not need to be newly diagnosed but could be an existing patient within a service e.g. attending as an outpatient or the day hospital.
 
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 does carer mean?
 
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.
 
Research means drugs doesn’t it?
 
No. Although the network is keen to have people willing to participate in trials of new potentially effective medication, this type of research forms only a small minority of research which can be undertaken.
 
Being involved in research worries me. Should it?
 
No. You may be alarmed at the thought of what research might involve. You may immediately think of experimental and possibly toxic drugs, research involving you being withdrawn from your current treatment, side effects which might be harmful to you or have worries about what might happen to you when the research is complete.
 
All these possibilities are explained to you for each study you may consider taking part in and if you have any worries you will have the opportunity to ask questions. This may result in you not taking part in that particular study. It’s your choice which studies you take part in.
 
What kind of research can I be involved in?
 
There are many different types of research which you can be involved in. Some studies involve you simply giving a blood sample, saliva sample or skin sample.   Others involve the completion of questionnaires which may be similar to those carried out when you are having your memory assessed or inquiring about your quality of life. In some studies many of these questionnaires or intellectual tests are grouped together. 
 
Other 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.
 
Why were these assessments chosen?
 
A range of commonly used assessments were chosen to allow researchers to have a broad spectrum of baseline tests on memory, behaviour, ability to function within the persons environment, ability to carry out activities of daily living and how mild, moderate or severe the dementia is. The tests were picked with ease of use for the person with dementia and the research staff in mind.
 
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 your clinical care nor would it prevent you from being offered other studies in future. 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 my clinical care?
 
No. Being on the register is entirely optional and separate from any clinical or social services you might receive.  Your 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 referred?
 
At the moment the best way of referring people is for the clinician to e-mail your details to one of the local network staff.  All we need is a name, address and telephone number.
 
Once referred, 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 carry out some basic assessments.
 
Will anyone else be informed of the outcome of the assessments?
 
Yes. These assessment results will be passed on to your GP or your consultant and to any one else within the psychiatric team involved in your care.
 
What will happen after I am entered on the register?
 
Once a research project that is looking for people with your type of characteristics 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 within the Scottish population.
 
I’m worried about my illness – 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 but your current clinical care providers such as your consultant, community psychiatric nurse (CPN) or GP should be able to give you some good information on other worries you may have such as prognosis, hereditary worries, 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 562322 or emailing
[email protected]
© 2010, Scottish Dementia Clinical Research Network Hydrant