Plain Language Statement
Title of Research Study: Assessment of Subjective Memory and Cognitive Complaints in Primary Care
Principle Investigator: Ms. Sophia Kilcullen (Tel: 01 700 6083)
Co-investigators: Dr. Kate Irving, DCU School of Nursing and Human Sciences
(Tel: 01 700 7985)
Prof. Teresa Burke, DCU School of Nursing and Human Sciences
(Tel: 01 700 7955)
Introduction: Thank you for expressing an interest in this study. You are being invited to take part, on a voluntary basis, in this research study, which is being carried out by Sophia Kilcullen, a PhD candidate in the School of Nursing and Human Sciences in Dublin City University (DCU) in part fulfilment of a PhD. Before you decide whether or not to participate, please read the following information carefully. If you require further information, or would like to ask any questions, please contact the research team – contact details are above.
Background and aims of the study: Many people experience memory slips and failures, especially as they get older. There are many possible reasons for these and they do not automatically indicate a memory disorder. We are interested in knowing how people rate their memory in various everyday contexts. In particular, we would like to know how well you are able to remember future plans and intentions, as well as events and information from the past. Although this information is important for understanding what is usual in terms of the types of memory difficulties people experience, this information is not yet available for the Irish population.
Am I eligible to take part in the study? To take part in this study, you need to be aged 50 years or older, living independently in the community, be fluent in English and not have a history of dementia, neurological condition such as Parkinson’s disease, stroke, tumour, multiple sclerosis etc., significant psychiatric illness, learning disability or significant hearing or visual impairment.
What does participation in the study involve? If you agree to take part in this study, you will be asked to answer some questions about your everyday memory, current mood state, socio-demographics, health status and health history. You will not, however, be asked to provide either your name or address, and no other personally identifiable information about you will be collected. Questionnaires will take approximately 30 minutes to complete. Only the research team will have access to the data and the information will be kept confidential and securely stored at all times.
Are there any risks associated with the study? As this study asks you for your opinions about your memory and mood, it is possible that you may become concerned about your memory or emotional well-being as you work your way through the questionnaire. If, at any stage, during completion of the questionnaire, you feel distressed or concerned, you can withdraw without completing it and you will not have to provide any explanation of your decision. If you have any current concerns, you might wish to speak with your GP or someone else before making a decision about whether or not to participate.
Are there any Benefits (direct or indirect) to my involvement in the Research Study? The information you and others give about everyday memory slips will, when analysed, help GPs and other practitioners more accurately judge the significance of memory complaints and help them to make appropriate decisions about how best to deal with these so that the potential risk of further decline is avoided. This may or may not benefit you directly, but will benefit other people in the future who experience a decline in their memory abilities.
How will the information I provide be protected? How will my identity be protected? If you agree to take part, you will be asked to complete an anonymous questionnaire. Neither your name nor address will be required. No information that could potentially identify you will be collected. Any data (name, address, phone number) provided by you in the event that you request a hardcopy questionnaire will be destroyed as soon as the hardcopy questionnaire has been sent to you. Findings published from this study in reports and journal articles will not contain any personally identifiable information.
What will happen to the data? The data collected for this study will be summarised and will be presented in a PhD thesis to be submitted to DCU. The data may also be used for anonymised publication in journals or reports. Information will be stored for a maximum of 10 years. Thereafter, all documentation and electronic files will be destroyed permanently. As the data you provide will be anonymous, it will not be possible to receive individual feedback nor to access or retract your answers. However, a one-page summary of the research findings will be available upon request following submission and examination of the thesis.
Involvement in the Research Study is voluntary and you have a right to withdraw: Participation in this study is completely voluntary and there will be no penalty for withdrawing from the study. However, given the nature of the study, it will not be possible to withdraw your data after it has been submitted to the research team as we will have no way of knowing which questionnaire is yours. Whether or not you wish to take part in the study, you might be interested in obtaining some information related to memory, healthy ageing and dementia. If you are interested in improving your awareness about these topics, please see DCU Dementia Elevator project at:
For video information about healthy brain practices that may help prevent dementia, you can visit the webpage www.freedemliving.com from the Neuroenhancement for Independent Living (NEIL) centre in Trinity College Dublin.
What to do if there are concerns about the study: If you have any concern about this study and wish to contact an independent person, please contact: The Secretary, Dublin City University Research Ethics Committee, c/o Office of the Vice-President for Research, Dublin City University, Dublin 9. You may also contact the project supervisors, Dr. Kate Irving (Tel: 01 7007985) and Prof. Teresa Burke (Tel: 01 700 7955).
What should I do now? If you are interested in completing the study, please proceed to the Informed Consent Form on the next page. You might also wish to print a copy of this Plain Language Statement. You should do this before proceeding to the Informed Consent Form.