Abstract
With dementia prevalence set to increase as our population ages, there is an 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. This study examined the feasibility of developing a national dementia register for Ireland. A rapid review of national and international patient registry literature was undertaken 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 an Irish dementia registry. 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. Common themes that emerged from the literature review and stakeholder discussions were: registry function; registry data; benefits and risks; governance; legislation; barriers and facilitators; lessons learned; best practice; and complexities within the Irish system. Given the government strategy of addressing research and information systems as part of the 2014 National Dementia Strategy, it is opportune to examine the best approach to improving dementia data recording in Ireland. These results provide an evidence-base on which to progress this debate.