Republic of Ireland

Developing and Implementing Policy in Ireland

O’Shea, E., Cahill, S. and Pierce, M.
O’Shea, E., Cahill, S. and Pierce, M.
2017

This edited report is intended as a reflection on various aspects of care for people with dementia in Ireland and internationally with a view to informing future developments in dementia policy in Ireland and laying the foundations for the next iteration of Ireland’s National Dementia Strategy.

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.

Reframing policy for dementia'

O’Shea, E., Cahill, S. and Pierce, M.
Walsh, K., Carney, G.M., and Ní Léime, A. (eds.)
2015

This chapter on policy development and implementation in Ireland was written against a backdrop of a prolonged austerity in Ireland and cutbacks in public expenditure. The chapter summarises key information about dementia in Ireland, including prevalence and costs of dementia.

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.

A National Dementia Registry for Ireland: A Feasibility Study

Hopper, L., Hughes, S., Burke, T. Irving, K.
Alzheimer Society Ireland
2016

This study was commissioned by the Alzheimer Society of Ireland to generate an evidence-based discussion document on the feasibility of a national dementia registry for Ireland.

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.

Paying Dividends: A Report on The Atlantic Philanthropies Investment in Ireland (2016)

O’Shea, E. and Carney, P.
Centre for Economic and Social Research in Dementia, NUI, Galway
2017

This study examines The Atlantic Philanthropies investment in dementia in Ireland and its impact on the lives of people with dementia and their families, focusing mainly on investments made between 2011 and 2015.

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.

Living With Dementia’: Implications for the National Dementia Strategy: Summary of Roundtable Discussions Submitted to the National Dementia Strategy Working Group

Alzheimer’s Society
Alzheimer Society of Ireland
2013

The fourth Alzheimer Society of Ireland publication reports on two roundtable discussions organised by the Alzheimer Society of Ireland, which provided an opportunity for the National Dementia Strategy Working Group and Department of Health officials to meet with people with dementia and carers a

nd get their input on priority areas earmarked for inclusion in the strategy. The roundtables were structured around three themes: the role of the GP; community services; and dementia awareness and education. The report summarises the discussions points and key messages under each heading. 

Multidisciplinary Clinicians Roundtable on the National Dementia Strategy

Alzheimer’s Society
Alzheimer Society of Ireland
2013

The third Alzheimer Society of Ireland publication is a report summarising a roundtable discussion involving healthcare professionals from multidisciplinary backgrounds including occupational therapy, social work, physiotherapy, speech and language therapy and nursing.

The themes used to structure the roundtable discussion were grounded in each of the five disciplinary areas: non-pharmacological interventions and behaviours that challenge (occupational therapy); improving Communication (speech and language therapy); physical activity for health and wellbeing (physiotherapy); A Social Work Perspective (social work); and the registered nurse’s contribution to person centred care (nursing).  As with the previous roundtable discussion, the report concludes with a set of suggestions as to how multidisciplinary clinicians can influence the development of the Irish National Dementia Strategy.  

Clinicians’ Roundtable on the National Dementia Strategy ReportClinicians’ Roundtable on the National Dementia Strategy Report

Alzheimer’s Society
Alzheimer Society of Ireland
2013

The second Alzheimer Society of Ireland publication is a report summarising a roundtable discussion involving health care professionals from the four areas of Old Age Psychiatry, Geriatric Medicine, Neurology and Psychology.

Facilitated by the Alzheimer Society of Ireland, the roundtable discussion brought together participants to share their expertise and discuss core clinical elements of the upcoming Irish National Dementia Strategy. The discussion centred on three key themes: Clinical Leadership and Developing a Dementia Register; People with Younger Onset Dementia; and Early Diagnosis and Memory Clinics/Services. A set of further actions needed to move the issues discussed forward is also included. 

National Strategy on Dementia: Summary of Consultation Process

Department of Health
Department of Health
2012

Following the assembly of the evidence into the research review described above, the Department of Health embarked on a public consultation process which commenced on 4 July and concluded on 31 August 2012.

The Department of Health invited submissions and used the research review as a basis for developing a questionnaire used in its public consultation. It received 73 responses and the core messages contained in the submissions and completed questionnaires are summarised in this report.  

A National Dementia Strategy for Ireland: Signposting the Possibilities: A Clinician’s Perspective

O’Connell. H.
Alzheimer Society of Ireland
2012

This first of four publications in this section from the Alzheimer Society of Ireland is written by O’Connell (2012) who outlines key directions from the clinician’s perspective to be taken in ROI’s National Dementia Strategy including an emphasis on prevention, early diagnosis and access to the

best available treatments. He acknowledges that people with dementia may have different priorities to clinicians and healthcare professionals and that it is important that the voice of the person with dementia is heard. Following a brief review of national dementia strategies in other countries, O’Connell outlines what he believes should be included in the Irish National Dementia Strategy. 

Creating Excellence in Dementia Care: A Research Review for Ireland’s National Dementia Strategy

CAHILL, S., O’Shea, E., PIERCE, M.
ICSG, Living with Dementia
2011

An extensive research review was undertaken by Cahill, O’Shea and Pierce (2011a), which provided updated estimates of the number of people with dementia in ROI in 2006 and projections of future numbers in 2041.

It estimated the social and economic costs of dementia to be €1.69bn per annum, a large proportion of those costs falling on informal caregivers. It reviewed the current and future availability of services for people with dementia, looked at what other countries are doing and what lessons can be learned from them. The findings of this research review were distilled into a shorter report aimed at the general public (Cahill, O’Shea and Pierce, 2011b). 

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