Philanthropy and dementia care in Ireland

Introduction

The Atlantic Philanthropies (Atlantic) are a limited life foundation (1982–2020) that have made significant philanthropic contributions to the education, ageing, and dementia sectors in Ireland since their first Irish investment in 1987 (Collins, 2017). Atlantic had been involved in the ageing sector in Ireland since 2004, focusing on a broad holistic psychosocial approach to ageing (Cochrane, Mcgilloway, Furlong, & Donnelly, 2013). In 2010, following a very successful investment programme in ageing, Atlantic expanded into the area of dementia care in Ireland. Atlantic increased their focus on dementia at a time of decreased public spending and austerity in Ireland, when all sectors including the health sector were experiencing budget cuts. This paper describes Atlantic’s Dementia Investment Programme in Ireland. The scale of the investment and its impact on the sector and various stakeholders is explored. The role that Atlantic played in the evolution of dementia policy in Ireland from a mainly biological approach to dementia care to a more holistic biopsychosocial model is also examined.

International dementia

Dementia has been identified as the biggest challenge to global health and social care of this generation, with an estimated 47 million people living with dementia in 2015 worldwide (Livingston et al., 2017). In recent years, dementia has gained the attention of international agencies such as the World Health Organisation (WHO), the Organisation for Economic Co-operation and Development (OCED) and the United Nations (UN), all recognising dementia as a major public health issue and calling for a new person-centred approach to the disease (G8 UK, 2013; OECD, 2015; Prince & Jackson, 2009; Prince, Bryan, & Ferri, 2011; Rubinstein, Duggan, van Landingham, Thompson, & Warburton, 2015; Winblad et al., 2016). The World Dementia Council (WDC) was created in February 2014, following the G8 Dementia Summit in London in December 2013, and has also contributed to raising awareness of dementia as a priority. The scale, reality and the challenge of the response that has been made to dementia at the international level is captured in the comprehensive Global Action Plan on Dementia (GDAP) which was adopted by the World Health Assembly in May 2017 (WHO, 2016).

Internationally, the biopsychosocial model is gaining acceptance as the gold standard in dementia care, through consideration of a broad range of factors – biological, psychological, social, economic, cultural and environmental – which are likely to influence the subjective experience of dementia. The biopsychosocial model takes a ‘whole person’ approach to dementia and recognizes the multiple domains, medical, behavioural, functional, physical, psychological and emotional, likely to be affected by dementia. It builds on the pioneering work of Kitwood and Bredin (1992) through an emphasis on person-centred care, as well as promoting personalised responses to the problems posed by dementia. In so doing, the biopsychosocial model demonstrates that no single specialty has the expertise to respond to the multiple challenges dementia poses, rather the optimal approach, to enable the individual live well, is through involvement of multiple skilled personnel.

Dementia policy in Ireland

Over the last five decades in Ireland a small number of policy reports have been published to address the care requirements of dependent older people in the country, particularly the balance of care between home care and residential care. The Years Ahead report in 1988 was the first policy document on ageing that mentioned dementia explicitly, calling for a greater emphasis on keeping older people with dementia “in dignity and independence” at home (Robins, 1988). However, the resources necessary to develop community-based care for people with dementia never materialised and the care system in Ireland has remained biased towards residential care. Indeed, the Nursing Home Act 1990 reinforced the medicalisation of dementia and the prevailing emphasis on residential care, as did generous tax breaks designed to increase the supply of nursing home beds.

The approach to dementia in Ireland has, therefore, been firmly rooted in the biological model of care. The publication of An Action Plan for Dementia (O'Shea & O'Reilly, 1999) was the first attempt to broaden the approach to dementia care in the country. The Plan highlighted the need for a social model on dementia with a stronger focus on community care and on maintaining and developing personhood within dementia care. The Plan also called for significant investment in dementia care systems, structures and infrastructure, including psychosocial models of production. However, despite national agencies calling for the implementation of the recommendations contained in the Plan, it was never fully adopted by successive governments and person-centred care for people with dementia remained an aspiration rather than a reality. The rhetoric of person-centred care was strong, but the reality was a system highly geared towards supply-side control of the care experience, mainly expressed in medical terms.

This lack of engagement with dementia continued in the decade after the publication of the Plan, despite consistent pressure from the Alzheimer Society of Ireland (ASI) for dementia to be made a national health priority (ASI, 2007). There were always those looking to change the landscape for dementia in the country, but their voice was not coherent, nor was it ever collaborative enough, and, in any case, with the arrival of economic austerity in 2010, there was a resignation among stakeholders that things were likely to get worse, not better. In the political turmoil that followed the collapse of the economy, the new incoming government did commit to the development of a National Dementia Strategy, but made it clear that it was to be at no cost to the Exchequer. It was at this precise time that Atlantic made a strategic decision to prioritise investment in dementia care in Ireland.

While external factors and international developments, described in the previous section, undoubtedly nudged the Irish government to address the current and future challenge of dementia and towards a broader holistic model of dementia care, the absence of people with dementia from the policy debate in Ireland was notable. Self-advocacy in Ireland has been slow to evolve compared to countries such as the UK or Australia, where people living with dementia have been given a platform to speak and be heard since the turn of the century. The absence of this newly emerging dialogue in Ireland may partly explain the dominance of the biological model of care underpinning dementia services in Ireland. That is now beginning to change as a result of people with dementia becoming more actively involved in policy formulation and implementation, but it has been a slow and uneven process.

Methods

This paper builds on a wider evidence-led account of Atlantic’s dementia programme in Ireland, outlining the impact on the lives and of people with dementia in Ireland and the overall sustainability of the investment (O'Shea & Carney, 2016). Atlantic provided the researchers full access to all funded projects in dementia, including: original proposals; progress reports; budgets; peer-review publications; external evaluations; and any other relevant documents. Interviews with grant holders and other key stakeholders were conducted to establish the origins of each grant, the implementation process and the key deliverables associated with the grant. Grant holders were interviewed using a structured questionnaire to establish the context and thinking behind each grant application and to elicit the factors the grantees considered important for success.

A semi-structured interview guide was sent to each of the grant holders prior to face-to-face interviews being carried out with each. Interviews mainly took place over a four month period in spring/summer 2015. Topics covered in the interviews included: origins and context of the grant application; rationale and conceptual underpinnings of the project; key objectives; overall budget and reasons for any changes to the budget originally proposed; key practice change, service delivery and policy performance indicators; impact of the project on personhood, awareness, attitudes, voice and agency; obstacles and learnings; alignment between the grantees and the National Dementia Strategy; integration and collaboration; and sustainability and legacy. Thematic analysis of all interview material was undertaken in NVivo to identify key themes and inter-dependencies emerging from the data.

All of the grants were on-going at the time of data collection, making it difficult to make definitive statements on impact. Moreover, only a small number of internal or external evaluations had taken place at the time of data collection. To combat this lack of material as a follow-up to the interview process, a round table discussion with all grantees was held in autumn 2015. At the round table discussion the authors presented key issues in dementia emerging from the international literature, the key themes and main findings from the grantee interviews and provided a policy review of Atlantic’s investment in Ireland. A representative from each grant delivered a short presentation outlining the key impacts of their grant and progress to date. Following on from this, each grantee was contacted via email, at two separate time points, requesting that they contribute quotes, case studies or vignettes to illustrate the impact of their project on the lives of people with dementia, their carers and other key stakeholders.

Interviews with key personnel in the Department of Health and the Health Service Executive (HSE) were carried out to gain insight into the impact of Atlantic’s Dementia programme on priority setting and resource allocation in dementia care. In addition all relevant documentation such as, evaluation reports, government policy papers, academic literature, election manifestos of the main political parties and international reports on dementia, were reviewed to investigate the contribution made by Atlantic to dementia reform in Ireland.

The investment

The total direct investment by Atlantic in dementia in Ireland was €33 million. A further €51 million was leveraged from government and other agencies, leading to a total investment of €84 million in dementia over the time period from 2011 to 2016 (Table 1). The overall investment programme engaged with 13 non-governmental organisations nationwide with key involvement from the HSE and the Department of Health in many of the projects. Building on relationships developed with key personnel in government and the ageing sector from previous granting programmes, Atlantic identified the major players in the dementia field across different sectors in Ireland and provided funding for projects to bring about change in the way dementia care was conceptualised and delivered in Ireland. Just over one-third of all direct funding from Atlantic was provided in support of the new National Dementia Strategy – €12 million in total.

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Table 1.

Atlantic funding for dementia in Ireland.

Project	Atlantic funding	Matched Funding Source	Matched Funding Amount	Total funding
Genio	€3,924,600	Government	€3,000,000	€6,924,600
Health Research Board	€2,700,700	Department of Health / Health Research Board	€1,870,000	€4,570,700
Age Friendly Ireland	€178,426	Local PartnersHome Instead	€259,000€30,000	€467,426
Health Service Executive – National Dementia Strategy	€12,000,000	Health Service Executive / Department of Health	€15,500,000	€27,500,000
University College Cork	€2,330,000	University College Cork / Health Service Executive	€2,330,000	€4,660,000
Trinity College Dublin – NEIL	€2,454,399	Trinity College DublinOther	€425,000€12,835,000	€15,714,399
Alzheimer Society of Ireland	€1,524,093	Aalzheimer Society of Ireland	€1,513,000	€3,037,093
Health Service Executive – SAT	€2,000,000	Department of Health / Departmetn of FinanceHealth Service Executive	€4,280,925€4,404,325	€10,685,250
Irish Hospice Foundation	€1,500,000	Fundraising / Irish Hospice Foundation reserves	€1,581,432	€3,081,432
Third Age – SAGE	€2,000,000	Health Service ExecutiveOther sources	€2,000,000€369,250	€4,369,250
Dublin City University – Elevator programme	€935,000	Health Service Executive	€800,000	€1,735,000
Trinity College Dublin – Creating Excellence in Dementia	€388,132	-		€388,132
Trinity College Dublin – Living with Dementia	€1,200,000	-		€1,200,000
Total	€33,135,350		€51,197,932	€84,333,282

Coherence and diversity

The grants covered a wide range of activities across different areas, addressing a multitude of issues relating to dementia, sometimes converging, others times not. The qualitative analysis has succeeded in distilling the various activities supported by the grants into five major themes within dementia: service transformation; advocacy and awareness; brain health – prevention and diagnosis; education and training; and measurement, research and evaluation. Each of these areas will now be considered in turn.

The National Dementia Strategy

As a crucial first step in the development of the National Dementia Strategy, and a sign that the issue was gaining traction in political circles, Atlantic funded a seminal report titled Creating Excellence in Dementia Care, authored by longstanding Atlantic grantees in ageing research (Cahill, O'Shea, & Pierce, 2012). This report provided the government with a critical baseline of research and policy analysis upon which it then proceeded to build its dementia strategy. Equally important, the government established a high-level Working Group, comprising public officials and several Atlantic grantees, to draft the promised Strategy. The grantees were powerful agents of change at a crucial stage in the development of the Strategy.

A number of service and research initiatives resourced and supported by Atlantic fed into areas identified as priority actions in the Strategy. The Genio pilot projects demonstrated the importance of integrated services and personalised care and supports for people living with dementia on the boundary of home care and residential care, which became the basis for significant investment in the Strategy in the form of intensive home care packages for people with dementia (O'Shea & Monaghan, 2016). The advocacy and stigma campaigns run by the Alzheimer Society of Ireland linked directly into the Understand Together national awareness campaign, a significant element of the Strategy. The Irish National Audit of Dementia Care in Acute Hospitals was central to informing the Strategy in relation to dementia care in Irish acute care hospitals.

The development of the National Dementia Strategy took place under the most testing of financial circumstances in Ireland. Without Atlantic’s commitment to provide financial support for the new Strategy, and the ongoing lobbying by grantees, it is unlikely that any new resources would have been provided by government, given the absence of public resources in the country at the time. The Irish National Dementia Strategy identified six key priority action areas: better awareness and understanding; timely diagnosis and intervention; integrated services and supports; training and education; research and information systems; and leadership. The Strategy is currently over half way through its implementation with a total budget of €27.5 million, almost half of which was provided directly by Atlantic on the agreement of matched funding by the government, including resources to evaluate outcomes and impact in relation to the Strategy (O'Shea & Carney, 2016).

Discussion

Since 2009, dementia has been increasingly recognised as a global health problem which needs to be addressed (Prince & Jackson, 2009; Wimo & Prince, 2010). Atlantic’s Dementia Investment Programme coincided with the increase in global attention for dementia and a time when Ireland was at risk of national economic bankruptcy. As dementia numbers were increasing in Ireland (Pierce, Cahill, & O’Shea, 2014), Atlantic stepped in to support key people to initiate change in dementia care. This was achieved through direct monetary investment in programmes led by carefully selected grantees and by leveraging additional spending from government and government agencies. Ultimately the investment projects culminated in the publication and implementation of the National Dementia Strategy in Ireland with personhood and citizenship as its main underlying principles. The Strategy brought together elements of Atlantic’s ongoing investment programme and continued progress that had been made in areas such as: dementia awareness; tackling stigma; diagnosis; education and training; and personalised home care provision. Had Atlantic not entered the dementia space in Ireland the National Dementia Strategy may have been published but, like so many strategies and reports before it, would likely never have been implemented.

In general, it is difficult to estimate the global contribution of private philanthropy to economic and social development, but the positive impact of philanthropic donations is acknowledged (McCoy, Chand, & Sridhar, 2009). There has been valid criticisms of private philanthropy in regard to the undemocratic approach to setting the research agenda (Gallagher & Bailey, 2000), with investment also being accused of acting sometimes to increase the social divide rather than narrow it (Reich, 2005). Philanthropic funding can certainly act as an instrument to shape policy for the benefit of those funding the investment (Stuckler, Basu, & Mckee, 2011) and that has been a concern in regard to dementia in Ireland. Whether the process has been democratic enough and whether it is right that citizens have to rely on philanthropy for basic services and supports in dementia care is a valid argument. The reality, however, is that general taxation in Ireland has not delivered the money to support people with dementia to live well at home. Without Atlantic's support fewer people with dementia would have received the care that they need to remain living at home. This is something that Atlantic wanted to happen, but it has also been an objective of successive Irish governments now for decades. Government policy has explicitly been to support community-based care, but policy implementation has always been poor, leading to weak and fragmented provision. So Atlantic has succeeded in nudging the allocation of resources towards the stated objective of home care where possible and practicable for people with dementia. Moreover, unique to Atlantic’s investment in Ireland was their strong commitment to social change and to supporting research initiatives which would later translate into veritable service development and expansion to improve the lives of people affected by dementia.

The approach taken by Atlantic to the granting process in Ireland has been organic in nature, in the sense that they have acted as enablers to support local development through a bottom-up approach to change. Atlantic came with big ideas but with a belief that by supporting the right people these ideas would lead to sustained improvement in dementia care. Atlantic, through its programme managers, became deeply embedded in the social structure of dementia in the country. The approach was strategic and comprehensive, drawing together a variety of well-established actors and agencies in dementia care in Ireland to work independently and collectively for change. Atlantic infiltrated existing organisations and used pre-existing relationships with government to align the investment strategy with the goals of government and dementia stakeholders, building on emerging international developments around dementia care. The voice of the person with dementia was explicitly championed and supported through nearly all of the programmes supported by Atlantic investment.

What are the lessons for other philanthropic organisations and countries who might want to replicate the Irish experience in dementia or indeed in other areas of ageing? The first lesson is to choose your grantees well and know the market place for ideas before you spend any money. Atlantic took time to understand the dementia landscape in Ireland. The experience, past record of achievement, reputation and credibility of grantees were important for all successful grants. The second important ingredient is that values matter. Clearly, Atlantic believed in putting people with dementia at the heart of decision-making and in developing care models that emphasised individualised supports at home in the community. Therefore, the major grants were designed to consistently support personhood and community-based care in a reasonably coordinated and integrated manner. The third important factor is to build a close and credible relationship with government. Atlantic had already established its bona fides with government in Ireland through its work in higher education, but new relationships were forged within the dementia policy-making community, making it easier to get traction on some of its jointly funded projects later on. Having big ideas that fit the prevailing mood of government also helps, as evident by the partnership agreements reached on the National Dementia Strategy between Atlantic and the Department of Health. Fourth, the prudent approach taken by Atlantic in the adoption of multi-pronged support of dementia initiatives rather than invest in one or two major stakeholders was also important. Atlantic funded a variety of projects across a range of organisations spreading the risk and encouraging communication between the different grantee organisations. Finally, building in research and evaluation into the grant-making process provides the framework for evidence-based decision-making and is a powerful stimulus for on-going rationality in resource allocation for grantees and for government. An emphasis on evidence and evaluation is a long-standing trait of Atlantic’s involvement in public policy in Ireland and has been influential in overall public service reform in the country. A more rigorous approach to evidence, in terms of its production and use, is now accepted across all government agencies (Cochrane et al., 2013).

There are some clouds on the horizon. Atlantic have now exited the funding arena in Ireland leading to questions about the sustainability of many of the programmes that have depended on them for ongoing support. Some of the successful programmes need to be scaled up to national levels and there are fears that in the absence of Atlantic promptings this will not happen. There are also legitimate concerns about the funding of new ideas and innovation in dementia care now that Atlantic have left the stage. The leverage of Atlantic money is gone and with it the power to influence the behaviour of government in regard to co-funding new programmes, particularly in the psychosocial space. Time will tell whether new forms of government funding will be found to replace Atlantic support and an early test will be the commitment to provide the money necessary to formulate and implement a second National Dementia Strategy.

Finally, many of the current Atlantic grant leaders are close to the end of their careers and there is real concern about succession and the leadership potential of the new generation. Many of the younger generation working on Atlantic-funded projects have found it difficult to obtain the job security and tenure necessary to launch successful careers. Irish universities have been very poor in providing career platforms for high-achieving researchers, leading to concerns about positive legacy outcomes in relation to leadership and capacity building with the dementia research community. This is at a time when new leaders are necessary to build on the considerable achievements of Atlantic in dementia and maintain the pressure on government for ongoing reforms in their absence.

Conclusion

The full dividend from the investment by Atlantic in dementia in Ireland will not be known for some time. Most of the grants have not yet been completed and only a small number of them have been subject to internal or external evaluations. The counterfactual to Atlantic’s investment in dementia in Ireland is difficult to determine, but it is clear that even if one took the position that change was coming anyway, a proposition for which there was little evidence, Atlantic ensured that it came much faster and in a more coherent manner. What we do know is that the dementia landscape in Ireland has changed significantly in less than a decade. Where once there was pessimism, now there is cautious optimism. The voice of the person with dementia is also stronger. It is not that dementia care in Ireland is perfect. It remains under-funded and does not yet have the priority status from government that it deserves. But there has been a paradigm shift in policy towards personhood and the social model of care linked to evidence-based research. The challenge for stakeholders is to ensure that the gains made in recent years are capitalised upon and leveraged to continue the upward trajectory of care and support for people with dementia in the country. The challenge for government is to initiate a second National Dementia Strategy, building on the successes of the inaugural Plan, and come up with the new forms of funding in the absence of any further support from Atlantic.