Administration Centre CFAS
Institute of Public Health
Forvie Site, University of Cambridge
School of Clinical Medicine
Cambridge Biomedical Campus
Cambridge, CB2 0SR
T: 01223 330312
F: 01223 762515
W: www.cfas.ac.uk
CAMBRIDGESHIRE PROJECT FOR LATER LIFE STUDY
PARTICIPANT INFORMATION SHEET
Two years ago you were kind enough to help us in a large and important survey into the Health and
wellbeing of the older population funded by the Medical Research Council.
We would like to invite all those who took part to conduct a further interview. An interviewer will visit
you after 7 days to see if you would like to continue to take part in the study and to answer any
questions you may have regarding the research. The interviewer will then seek to arrange a convenient
appointment for you to conduct the interview which will take approximately 1½-2 hours to complete.
The study continues to examine how health and well-being varies and changes with age. The longer
the study continues the more valuable each contribution becomes. From this study we hope that we
will be able to suggest ways in which the health of older people can be improved in the future. Your
contribution, if you are willing to be re-interviewed, will help us with this.
Before you decide whether to take part is it important for you to understand why the research is
being done and what it will involve. Please take the time to read the following information carefully.
Background
The Cognitive Function and Ageing Studies (CFAS) Cambridgeshire Project for Later Life in which you
have taken part is a large study that has been on-going since 1990 and involves people aged over 65
in six centres in Britain these include: Liverpool, Newcastle, Nottingham, Oxford, Cambridgeshire and
Gwynedd.
Since the start of CFAS study there has been an increase in life expectancy and improved screening,
diagnosis and treatment of many chronic disorders and potentially advances in symptomatic
treatments for Alzheimer’s disease and other dementias.
The aim of this study is to find out how health and well-being change as people grow older and what
are the risk factors of someone developing dementia, to investigate the different diseases that cause
dementia and how quickly dementia progresses. We have also been able to look at depression and
depressive symptoms and at those with physical disabilities in the older population. We have
measured population differences over time to assess the differences between urban and rural
settings and have looked at the relationships between health, social factors and service receipt such
as visits to GP surgeries or hospital inpatient or outpatient visits.
A Collaborating Centre in the Cognitive Function & Ageing Study
Patient Information Sheet: Version 3: 19/02/2015
Why do 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 the
population. The information collected through the interviews conducted in the study will increase
our knowledge of the onset, course and risk factors for dementia and related conditions in the older
population as well as healthy and frail ageing.
Some participants have been asked to consider donating their brain after death. Those who felt able
and willing to donate their brain after death are making an enormously valuable gift that will bring
hope of a better life to future generations. It was not an easy decision to make and needed to be
discussed with the family.
Potential donors were asked to sign a Declaration of Intent. This is not a legally binding document,
and they are free to change their mind at any time. The final decision to donate the brain will be
made by the next of kin after the donor's death.
A very important aspect of the CFAS project is that we ask older people not suffering from dementia
to consider our request as well as those with dementia. This is crucial to understanding changes,
which occur in the brains of normal elderly people with those who have dementia.
The gift would only be used for research studies, which have been approved by the Management
Committee of CFAS and the CFAS Biological Resource Advisory Committee (BRAC), which includes an
independent scientist. These research proposals then are considered by the Research Ethics
Committee, which also have to give approval before tissue can be released for use.
If your next of Kin or caregiver has changed we would be most grateful if you could make them aware
of the decision that you came to regarding Brain Donation so that they may help us to carry out your
wishes.
Following the gift of donation, (normally 3-6 months later) a member of the CFAS team will contact
your next of Kin/care giver to seek a short retrospective informant interview to enquire about your
health between the point we last visited you and the date of the donation.
Do I have to take part?
No, there is no obligation to take part and you can withdraw at any stage, without giving any reason.
The study is for medical research only and will not affect your medical care or legal rights.
What will happen if I decide to take part?
If you should decide to take part, a research interviewer will again visit you at your home. If the time
is not convenient they will return at a more convenient time for you. They will go through the
information sheet with you and answer any questions you may have about the study. You will then
be asked to sign a consent form to say you have read the information sheet, have had the
opportunity to ask questions, and would like to continue to take part in the study.
Following this you will be asked questions on your health since we last visited you, contact with
friends and family and day to day activities, there will also be a section on memory and
concentration.
A Collaborating Centre in the Cognitive Function & Ageing Study
Patient Information Sheet: Version 3: 19/02/2015
You have in the past agreed to us having access to your medical records, as systems have evolved
regarding access to health records we would ask your permission to update your original consent
which would allow us to continue to flag your name at the Health and Social Care Information Centre
(HSCIC) who would then record the date and cause of death of participants in the study, they would
also inform us if someone on the study has left the National Health Service i.e. emigrated.
Subject to future funding we would hope to contact you again for a further interview in
approximately two years.
Occasionally we may ask with your consent to audio record an interview, audio recordings are
anonymised and used for training and quality control purposes only and will be destroyed when no
longer required.
Confidentiality
All the information collected by the study is completely confidential and it is stored without personal
details on secure systems in compliance with the Data Protection Act (DPA) 1998.
Data collected by the study will only be analysed by approved researchers.
This study has been considered by: HSC REC B: 14/NI/1087 and Wales REC 4: 15/WA/0035.
If the addressee is unable to respond, we would be grateful if a relative or carer could discuss with us
whether an interview can take place or whether the relative/carer would be willing to conduct an
informant interview with us.
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 Senior 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.
Professor Carol Brayne
Chief Investigator
Linda Barnes
Senior Study Coordinator CFAS
A Collaborating Centre in the Cognitive Function & Ageing Study
Patient Information Sheet: Version 3: 19/02/2015