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
INFORMATION FOR RELATIVES AND CARERS
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.
Two years ago your relative/friend was 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. The aim of the study
continues to be 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.
Before we ask for your consent to interview your relative it is 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 your
relative/friend has taken part is a large study that has been on-going since 1990 and involved 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. 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 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.
A Collaborating Centre in the Cognitive Function & Ageing Study
Information for Relatives/Carers: Version 2: 19/02/2015
Why has my relative/friend been approached?
Your relative/friend was randomly selected from National Health Service records in 1989 and was
approached to take part in the study. They consented to take part in the study and have conducted
many interviews with us over a period of more than 20 years. They gave their consent for us to reapproach them in two years’ time to see if they would be willing to conduct a further interview.
Some participants were 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 either a person nominated by the potential donor who has the responsibility and authority
to consent to brain donation or a person in a qualifying relationship as per Human Tissue Authority
(HTA) guidelines. The people in a qualifying relationship are in the following order: Spouse or Partner,
parent or child, brother or sister, grandparent or grandchild, niece or nephew, stepfather or
stepmother, half-brother or half-sister, friend of long standing.
A very important aspect of the CFAS study 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 older 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.
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 rights.
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 declaration
form on their behalf.
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.
A Collaborating Centre in the Cognitive Function & Ageing Study
Information for Relatives/Carers: Version 2: 19/02/2015
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 past your relative consented to us having access to their medical records, as systems have
evolved regarding access to health records we would ask your permission to update the original
consent which would allow us to continue to flag their 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 your relative/friend again for a further interview
in approximately two years.
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 the HSC REC B: 14/NI/1087 and Wales REC 4: 15/WA/0035
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
Information for Relatives/Carers: Version 2: 19/02/2015