MRC Cognitive Function and Ageing Study

Dept of Public Health & Primary Care Tel: 01223 330312 Institute of Public Health Fax: 01223 762515 University of Cambridge www.cfas.ac.uk Forvie Site Robinson Way Cambridge CB2 0SR

CAMBRIDGESHIRE PROJECT FOR LATER LIFE STUDY II 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. So far more than 5000 people in the UK have kindly agreed to take part in the study.

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 the 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.

The purpose of the study

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.

Since the start of the original CFAS study in the early 1990s 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.

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.

A Collaborating Centre in the MRC Cognitive Function and Ageing Study II Patient Information Sheet Wave 2 Version 1: 027/01/2011 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. The interview will take approximately 1½-2 hours.

Depending on future funding we may invite participants to take part in new areas of research such as providing a blood sample or brain imaging. Any future new research would require specific ethical approval.

In the future, subject to funding some participants may be asked to supply a blood sample which would also be stored for research purposes which would include genetic (DNA) tests, the blood would be taken by a trained phlebotomist. The results of these investigations are unlikely to have any implications for participants personally. Consent will be sought from respondents to inform their GP of the results, if measurements lie outside 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.

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 1998. Occasionally we may ask to tape record an interview, audio tapes are anonymised and used for training and quality control purposes only and will be destroyed when no longer required.

Data collected by the study will only be analysed by approved researchers.

This study has been considered by the Cambridge 4 Research Ethics Committee.

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 be interviewed instead.

A Collaborating Centre in the MRC Cognitive Function and Ageing Study II Patient Information Sheet Wave 2 Version 1: 027/01/2011 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 us on 01223 330312 or look at our website www.cfas.ac.uk

Professor Carol Brayne Linda Barnes Local Principal Investigator Study Coordinator MRC CFAS II

A Collaborating Centre in the MRC Cognitive Function and Ageing Study II Patient Information Sheet Wave 2 Version 1: 027/01/2011