Information for Relatives and Carers

Dept of Public Health & Primary Care
Institute of Public Health
University of Cambridge
Forvie Site
Robinson Way
Cambridge CB2 0SR
Tel: 01223 330312
Fax: 01223 762515
Ageing is now recognized as one of the major challenges facing the world’s populations. It
presents challenges to national and local policy makers and service providers in planning and
providing for the needs of the older population.
This study is based on the original MRC Cognitive Function and Ageing Study (CFAS) which
looked at ageing and health in six centres in the UK; Newcastle, Nottingham, Liverpool,
Gwynedd, Cambridgeshire and Oxford. The study began in 1991 with 18,000 participants, and it
still continues today.
Since the start of the original CFAS study there has been an increase in life expectancy and
improved screening, diagnosis and treatment of many chronic disorders. The aim of this study
is to find out how health and well-being change as people grow older. Some people experience
difficulties as they get older while others remain fit and active. We are interested in the full
range of experiences so that we can get a true picture of ageing in populations.
Why has my relative/friend been approached?
Your relative/friend was randomly selected from National Health Service records and was
approached to take part in the study. They consented to take part in the study and conducted
an interview with us. They gave their consent for us to re-approach them in two years’ time to
see if they would be willing to conduct a further interview.
Do they have to take part?
No, there is no obligation to take part and they can withdraw at any stage, without giving any
reason. The study is for medical research only and will not affect their medical care or legal
What will happen if my relative/friend should take part?
A research interviewer will arrange a suitable time and date to visit your relative/friend. They
will go through the information sheet with them and answer any questions they may have
before asking for their consent to take part. If your friend/relative is now unable to give
informed consent you will be asked if in your opinion they would have wished to continue to
take part in the research if they had been able to express a view. If you agree to this you will be
asked to sign a consultee consent form on their behalf.
A collaborating centre in the Medical Research Council Cognitive Function and Ageing Study II (MRC CFAS II)
Wave 2: Information for Relatives and Carers
Version 1: 27/01/2011
Following this your relative/friend will be asked questions on their health since we last saw
them, contact with friends and family and day to day activities; there will also be a section on
memory and concentration. A full interview will take approximately 1½-2 hours. If your relative
is unable to conduct a full interview, an interview based on the most important questions would
be conducted which would take no more than 15 minutes.
The interviewer would then seek your consent to conduct an informant interview in which you
will be asked to give information on your relative/friend’s health and well-being, which would
take approximately 1½ hours; this can be arranged at a time convenient to you.
In the future subject to funding some participants may be asked for a blood sample which
would be stored for research purposes which would include genetic (DNA) tests. The results of
these investigations are analysed in an anonymised manner. Consent will be sought from
participants to inform their GP of the results, if measurements lie outside of normal values.
Some people in the original CFAS study have made a further contribution to the study by
agreeing to possible future examination of the brain after death. This gift, so generously given,
has helped us to improve understanding of brain changes in ageing, some of which cause
dementia, such as Alzheimer’s disease. We may in the future be able to continue this work, by
asking participants in this study whether they might consider Declarations of Intentions to
donate (DOI). If participants express an interest in this aspect of the study, further information
will be given by our Research Team.
All the information collected by the study is completely confidential and it is stored without
personal details on secure systems in compliance with the DPA 1998. Data
collected by the study will only be analysed by approved researchers.
This study has been considered by the Cambridgeshire 4 Research Ethics Committee
If you have any concerns or complaints about anything to do with the study please contact us
on 01223 330312 and ask to speak to the study coordinator who if unable to help you will direct
you to the appropriate person. Indemnity arrangements for the study are provided by the
University of Cambridge and the NHS.
If you would like any further information or have any questions please contact one of the
investigators below or look at our website:
Professor Carol Brayne
Local Principal Investigator
Mrs Linda Barnes
Study Coordinator MRC CFAS II
A collaborating centre in the Medical Research Council Cognitive Function and Ageing Study II (MRC CFAS II)
Wave 2: Information for Relatives and Carers
Version 1: 27/01/2011