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PAYING DIVIDENDS a Report on the Atlantic Philanthropies Investment in Dementia in Ireland

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PAYING DIVIDENDS a Report on the Atlantic Philanthropies Investment in Dementia in Ireland Dem ent ia PAYING DIVIDENDS A Report on The Atlantic Philanthropies Investment in Dementia in Ireland Eamon O’Shea and Patricia Carney National University of Ireland Galway TABLE OF CONTENTS Section Title page Executive Summary 1 1. Introduction 6 2. Dementia by Numbers 9 3. Framing Dementia 15 4. International Developments in Dementia 20 5. Dementia Care in Ireland 25 6. Atlantic’s Investment: Context and Methodology 32 6.1 Investing in Dementia 32 6.2 Methodology 35 7. Atlantic Dementia Grantees in Ireland 38 7.1 Genio 39 7.2 University College Cork (UCC): Centre for Gerontology and Rehabilitation 40 7.3 Trinity College Dublin: Neuro-Enhancement for Independent Lives (NEIL) 41 7.4 Third Age Foundation: Support and Advocacy Service for Older People (SAGE) 42 7.5 Health Service Executive – Single Assessment Tool (SAT) 43 7.6 Alzheimer Society of Ireland 44 7.7 Irish Hospice Foundation 44 7.8 Health Research Board (HRB) 45 7.9 Health Service Executive: National Dementia Strategy 46 7.10 Dublin City University: Dementia Skills Elevator Programme 47 7.11 Age Friendly Ireland: Older people remaining at home (OPRAH) 48 7.12 Trinity College Dublin: Creating Excellence in Dementia Care 48 7.13 Trinity College Dublin: Living with Dementia (LiD) 48 7.14 Trinity College Dublin: Dementia Services Information and Development Centre (DSIDC) 49 7.15 Trinity College Dublin and University of California at San Francisco: Global Brain Health Initiative 49 8. Coherence and Diversity 52 8.1 The Key Themes 52 8.2 Service Transformation 53 8.3 Advocacy and Awareness 56 8.4 Brain Health - Prevention and Diagnosis 63 8.5 Education and Training 65 8.6 Measurement, Research and Evaluation 69 9. Atlantic’s Legacy 76 10. Conclusion 82 11. References 85 TABLE OF CONTENTS Appendix 1 – Questionnaire 91 Table of Tables Table 2-1: Estimated Number of People with Dementia in Ireland (2011-2046) 12 Table 7-1: Total funding sources for dementia investment programme 39 Table 8-1: NEIL Programme outputs 52 Table of Figures Figure 2-1: The Global Impact of Dementia 9 Figure 2-2: Dementia prevalence rates in Europe 10 Figure 2-3: Estimated prevalence of dementia per 1,000 population, 2015 and 2035 10 Figure 8-1: Atlantic’s Dementia Themes 52 Figure 8-2: Service Transformation 53 Figure 8-3: Advocacy and Awareness 57 Figure 8-4: Brain Health 63 Figure 8-5: Education and Training 65 Figure 8-6: Measurement, Research and Evaluation 69 ACKNOWLEDGEMENTS The authors would like to thank The Atlantic Philanthropies and in particular Mary Sutton and Tom Costello for initiating and funding this review. Special thanks to Gail Birkbeck for her continued support throughout the project to the final publication. Thanks to Christine De Largy for organisational support on the project. Finally the authors wish to extend their gratitude to the Atlantic dementia grantees in Ireland who took part in this review for their time and support. ACRONYMS ACP Advance Care Planning ASI The Alzheimer Society of Ireland BPS Biopsychosocial Appendix 1 – Questionnaire 91 CACE Centrally acting Angiotensin Converting Enzyme CARTS Community Assessment of Risk and Treatment Strategies Table of Tables CCS Caregiver Cognitive Screen Table 2-1: Estimated Number of People with Dementia in Ireland (2011-2046) 12 CHO Community Healthcare Organisations Table 7-1: Total funding sources for dementia investment programme 39 DCU Dublin City University Table 8-1: NEIL Programme outputs 52 DFC Dementia Friendly Communities DNNI Dementia and Neurodegenerative Network Ireland DoF Department of Finance Table of Figures DoH Department of Health Figure 2-1: The Global Impact of Dementia 9 ED Emergency Department Figure 2-2: Dementia prevalence rates in Europe 10 GAA Gaelic Athletic Association Figure 2-3: Estimated prevalence of dementia per 1,000 population, GADAA Global Alzheimer and Dementia Action Alliance 2015 and 2035 10 GBHI Global Brain Health Initiative Figure 8-1: Atlantic’s Dementia Themes 52 GDS Geriatric Database System Figure 8-2: Service Transformation 53 GP General Practitioner Figure 8-3: Advocacy and Awareness 57 HFH Hospice Friendly Hospitals Figure 8-4: Brain Health 63 HIQA Health Information and Quality Authority Figure 8-5: Education and Training 65 HRB Health Research Board HSE Health Service Executive Figure 8-6: Measurement, Research and Evaluation 69 ICGP Irish College of General Practitioners IDEAS Integrated Dementia Care Across Settings IHF Irish Hospice Foundation LMDAD Let Me Decide Advance Directive MCI Mild Cognitive Impairment MUH Mercy University Hospital NCEC National Clinical Effectiveness Committee NDIP National Dementia Implementation Programme NEIL Neuro-Enhancement for Independent Lives NGO Non-Governmental Organisation OECD Organisation for Economic Co-operation and Development OT Occupational Therapist OPRAH Older People Remaining At Home PHN Public Health Nurse PREPARED Primary Care Education Pathways and Research for Dementia QMCI Quick Mild Cognitive Impairment SAT Single Assessment Tool SATIS Single Assessment Tool Information System SCU Specialist Care Unit TCD Trinity College Dublin WHO World Health Organisation WISH World Innovation Summit for Health UCC University College Cork UK United Kingdom UN United Nations EXECUTIVE SUMMARY ORIGINS This study examines The Atlantic Philanthropies additional spending from government and government (Atlantic) investment in dementia in Ireland and its agencies. Atlantic also played a critical role in supporting impact on the lives of people with dementia and and effecting change through funding a wide coalition their families. The evaluation is focused mainly on of stakeholders in dementia to lobby for a new direction investments made between 2011 and 2015. Atlantic’s in dementia care and in commissioning the Creating recent investment in dementia in Ireland has been Excellence in Dementia Care research review which significant in terms of its ambition, scale and scope. It played a major role in the development of the Irish has helped to transform the care landscape for people National Dementia Strategy. with dementia in the country. Through its granting system, Atlantic built up a potent Atlantic has directly invested €33 million in dementia coalition of interests in the country that wanted more in Ireland and leveraged a further €51 million from than the continuation of what had gone before for people government and other agencies, resulting in a with dementia. Many of its grantees sat on the Expert total spend of €84 million, not including the recent Working Group to the National Dementia Strategy and commitments associated with the Global Brain Health had a major influence on priority-setting within the new Initiative, which is outside the scope of this report. The Strategy. Without Atlantic’s intervention, both direct investment was broad and far reaching, encapsulating and indirect through its grantees, the official approach support for personalised community-based care, brain to dementia might not have changed much in terms of health initiatives, advocacy, education and training values or orientation. There would have been no increase in dementia, culminating in ongoing support for the in service provision or community-based supports for formulation and implementation of the National people with dementia. The National Dementia Strategy Dementia Strategy in Ireland. Integration and co- contains the seeds for the transformation of care for operation among grantees has been important in people with dementia. In particular, the 500 intensive maximising the return on investment and formal community-based care packages for people with and informal collaboration among stakeholders has dementia promised in the National Dementia Strategy, increased the probability of successful outcomes in the if delivered appropriately and built upon, can be the longer term. Investing in the right people at the right catalyst for the eventual recalibration of the social care time was a key feature of the Atlantic programme and system towards home-based provision. These packages one of the main drivers of its success. only came about because of additional financial resources provided by Atlantic. Atlantic also recognised that for real change to happen, CONTEXT the current policy frame would have to be nudged towards a new paradigm that recognised the narrowness Atlantic entered the dementia space in Ireland at of the prevailing official mind-set towards dementia and a time when the country was confronted by the the opportunity that existed to develop more appropriate most serious economic crisis it had ever faced. The holistic counter-policy frames. The key emphasis imminent threat of national economic bankruptcy was to facilitate a movement away from a biological meant that there was no chance of generating model of care based on residential care solutions additional resources to fund dementia care without towards a community orientation that focused on brain getting some financial support from outside the public health, personalised care for people with dementia, budgetary system. At a time when public expenditure psychosocial interventions and appropriate supports for was being curtailed and dementia numbers were family carers. While that process is far from complete, increasing, Atlantic intervened to provide a stimulus to and the old model has not disappeared, Ireland, guided dementia care in Ireland, not only directly through the by an evidence-based approach, is now on a pathway to money it spent, but through its ability to leverage a person-centred,
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