Engaging people with dementia in research – best practice and person centred approaches considered in accordance with the demands for ethical scrutiny

This presentation considers the establishment of a research relationship and a research contract with people with dementia and their carers, and how to better engage participants in the research process from the outset, whilst working within the demands of ethical guidelines. In order for the research process to hold meaning for its participants, it is better that the research is carried out ‘with’ rather than ‘for’ or ‘on’. This can create a research process which is more empowering for the participant and delivers more meaningful output. This presentation will explore the ways in which researchers can adapt their approach when developing the often dry and difficult to understand documentation, which is ethically and morally important to the research process, for example the consent form or the participant research information sheets. The use of creative media such as photographs, videos or other visual and sensory elements may enhance pre research discussions with participants and also the development of information booklets that make the research process more easily understood, more relevant and more engaging for the person with dementia, whilst still taking into consideration issues of consent and the need to engage people with dementia in research responsibly. These issues are considered alongside the requirements of funding organisations and ethical committees whose processes and protocols need to be strictly adhered to, but which may not always be easy to understand or visually engaging for a person with dementia. Alongside personal experiences of developing ethical documentation which can better support a person with dementia to understand the aims of the research and what will be expected of them, this presentation will also consider the current recommended practice and existing standards used in research.