In a chapter on prevalence of dementia, new estimates of dementia are presented. By disaggregating the prevalence estimates by gender, age, disability and ethnicity, the chapter highlights people with dementia as a diverse group of people. The chapter on informal caregiving estimates that over 60,000 informal carers of people with dementia living in the community and discusses how and why family members become carers, the significant contribution they make and want to make, but also want this to be recognised by way of regular formal support services or cash benefits. A chapter on models of care addresses important questions about how dementia is framed and the model that should underpin future policy on dementia in Ireland. The personalisation of services for people with dementia, education and post-diagnostic supports are the subject of the next three chapters. The chapter on the economics and financing of dementia care brings together the economic evidence in relation to dementia care in Ireland and addresses the issue of financing care for people with dementia at home and in long-stay care settings. Finally, dementia is explored as a public health priority, and the mobilisation of governments to act and key alliances that are making at difference at international level are discussed.

It examines the current realities for people with dementia living at home, in the context of cutbacks to community care, and the implications for family carers. Diagnosis, community-based nursing and other community-based services are also examined within the broader context of austerity-driven constraints, as well as long-stay care. Following a brief review of key policy developments in other countries, the chapter argues that even with additional resources, the current approach to care for people with dementia would not change much without a reframing of policy for dementia. An alternative policy frame is proposed, one that replaces: individual with collective; biological with social; risk with capabilities; institution with home; deficit with asset; and exclusion with inclusion. The chapter considers what the counter-policy would look like and argues that adopting this counter-policy frame for dementia could lead to a seismic change in how people think individually and collectively about the disease.

It specifically aimed to review patient registry models in Ireland and examine their function and operation; review dementia registries that exist in other jurisdictions; identify the legal, ethical, clinical, IT systems and financial issues crucial to the development of a national dementia registry; and progress evidence-based policy recommendations for improved dementia recording in Ireland. A rapid review of the literature was undertaken, semi-structured interviews were conducted with national and international experts, and the perspective of people with dementia was obtained. The study identifies four main functions of patient registries: to inform public health policy; improve patient care; support health research; and facilitate health technology assessment. The report reviews existing best practice guidelines on patient registries, and summarises the guidance they provide. The study reviews dementia registries developed in Sweden, Denmark, Spain and the USA. It reviews the strategic policy framework and the legal and regulatory context in Ireland. The findings from the thematic analysis of expert interviews and focus groups focus on six themes: registry function; registry data; data collection; data management; registry governance; and legislation. The report sets out the learning from existing patient registries and questions that need to be asked and decisions that need to be made on the road to setting up a national dementia registry for Ireland, reported under five headings: getting started; determining the scope and design of the registry; ensuring the sustainability of the registry; delivering a quality dementia registry; and advocating for strategic policy and legislation to support patient registries.

The report discusses Atlantic’s €33 million direct investment in dementia in Ireland, the monies leveraged, the scope of this investment and the context in which this investment was made. It discussed the impact that Atlantic’s dementia programme had in practice in helping to transform care for people with dementia wishing to remain in their own homes and its impact on policy, particularly with regard to the National Dementia Strategy. Each of the grantees are presented, with the report pointing out that collaboration among grantees was central to Atlantic’s investment programme in dementia. The various activities supported by the grants are discussed under five major themes within dementia: brain health; advocacy and awareness; education and training; measurement, research and evaluation; and service transformation. The report outlines the implications the programme has internationally and its legacy in Ireland is that there has been a paradigm shift in policy towards personhood and the social model of care linked to evidence-based research and evaluation.