Dr Louise Hopper Post-doctoral Researcher School of Nursing and Human Sciences Dublin City University

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    • Dr Louise Hopper Post-doctoral Researcher School of Nursing and Human Sciences Dublin City University's presentations

    Louise Hopper, Ph.D in psychology, post-doctoral researcher at Dublin City University. Louise graduated with a B.Sc. in Computer Science from Trinity College Dublin in 1993 and worked in various information technology roles in Ireland and in the US from 1988 to 2001. She subsequently worked as a project manager in VHI Healthcare until she returned to Trinity College to study psychology, completing her Ph.D. in 2013. Louise has worked as a Lecturer in Psychology and she is now a senior post-doctoral researcher in Dublin City University. Her recent projects include assistive technology to promote independence for people with dementia, timely access to formal community-based care and psycho-social interventions to support those living with dementia.

    Presentation Title: Meeting the need for comprehensive dementia data in Ireland:

    The feasibility of a National Dementia regisrty

    Presentation Synopsis:
    The 2014 National Dementia Strategy outlined the government’s proposals for addressing research and information systems related to dementia. Yet, there remains an acknowledged urgent need to gather valid epidemiological data in Ireland that provides accurate and reliable estimates of current and future dementia prevalence and facilitates the development of effective dementia health and social policy. Our study, commissioned as part of the Alzheimer Society of Ireland evidence-based policy series, examined the feasibility of developing a National Dementia Registry for Ireland. We completed a review of national and international patient registry literature to identify registry functions, underlying design and process models, best-practice guidelines for their development, and the legal, ethical, clinical, technology, and financial issues relevant to the creation of a dementia registry in Ireland. Following ethical approval, we also conducted two focus groups with people with dementia and twenty-one expert stakeholder interviews with clinicians, and representatives from research, health, and social care organisations in Ireland and the UK, existing Irish patient registries, and international dementia registries. Discussions followed an agreed structure, were audio-recorded, transcribed, and analysed using inductive content analysis. We will present the six themes that emerged from these analyses: registry function; registry data; data collection; data management; registry governance and legislation. Three high-level cross-cutting themes were also identified: benefits and risks, barriers and facilitators, and dementia-specific challenges. Our findings provide an evidence-base from which we draw key conclusions and recommend actions to develop a comprehensive National Dementia Registry for Ireland. 

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