Dementia research in Ireland: What should we prioritise?

Introduction

Prevalence rates for the number of people living with dementia in Ireland range between 39,272 and 55,266, depending on the international rates used to measure prevalence (Pierse et al., 2019), with rates expected to more than double by 2045 (Dementia in Europe Yearbook 2019: Estimating the prevalence of dementia in Europe; https://www.alzheimer-europe.org/Publications/Dementia-in-Europe-Yearbooks). Dementia is the only condition amongst the leading causes of death globally without a treatment to prevent, cure or slow its progression although there are hopes that this may change with emerging potential disease modifying therapies such as Lecanemab. Rising dementia prevalence, an ageing population and a lack of disease-modifying treatments represents a significant scientific, medical and socioeconomic challenge for Ireland. Dementia places significant costs on society – both emotional and economic, and these costs represent one of the fastest growing burdens on healthcare systems in developed countries. The total direct and informal care costs for dementia are presently estimated at EUR 2 billion per annum in Ireland (Connolly et al., 2014). Despite this, funding for research in dementia has been disproportionately low when compared with the burden of disease, and there is a lack of information available in Ireland regarding priority areas for dementia research. It is vital that the limited resources made available are spent on research that has the most impact for those who will benefit from and use the results of research.

The importance of advancing research aimed at reducing the global burden of dementia has been recognised at an international level (e.g. WHO’s Global Action Plan on the Public Health Response to Dementia 2017–2025; European 2nd Joint Action on Dementia, 2016; G7/G8 Dementia Summit, 2013). Considering funding resources for dementia research are limited (despite increases in recent years), it is recommended that research priorities are set at a national and international level, to inform the systematic allocation of investment in dementia research by governments, funding agencies and the private sector (Shah et al., 2016). This is highlighted in the WHO’S Global Action Plan for Dementia (2017), which states that “successful implementation of research into dementia aligned with identified research priorities and social and technological innovations can increase the likelihood of progress towards better prevention, diagnosis, treatment and care for people with dementia” (p. 32).

On a national level, the Irish National Dementia Strategy (2014) includes a priority area on research and information systems, and there was an initial investment in dementia research at the time of publication. The Health Research Board’s (HRB) programme of applied dementia research, funded by Atlantic Philanthropies and supported by the Department of Health, had strategic relevance to the implementation of the National Dementia Strategy. The aim of this research programme was to support applied research projects in the areas of organisation and delivery of dementia services; management and decision making in dementia care; and social, economic and policy issues in dementia care.

A 2019 report from the Health Research Board and National Dementia Office (HSE), following their knowledge exchange event, identified many strengths of the dementia research community in Ireland, including: (i) a relatively small research community with good potential for cross-discipline and cross-sector working; (ii) a number of clinical leaders engaged in high quality research; (iii) the establishment of centres for dementia research; (iv) a focal point and coordination role of the National Dementia Office (HSE) and Dementia Research Network Ireland; (v) good potential for coordination between basic, clinical and social research; and (vi) prioritisation of research within the National Dementia Strategy. Ireland now also has a dementia clinical trial network and a strong presence of key sectors such as technology, pharmaceutical, medical devices and diagnostics, which should be harnessed.

Dementia Research Network Ireland (DRNI) and The Alzheimer Society of Ireland (ASI) are committed to advocating for increased investment in dementia research. To address the gap in information regarding research priorities in Ireland, DRNI and The ASI jointly hosted a Dementia Research Consensus Forum in April 2018. The forum brought together a wide range of stakeholders, representing the views of researchers, practitioners and clinicians, to collectively explore priorities for dementia research. The aim of the forum was to provide a platform to capture feedback from participants in relation to areas of dementia research that should be prioritised. Forty-four participants took part in a research prioritisation exercise, involving groups of eight to nine participants taking part in a facilitated roundtable group discussion. Groups were asked to address three questions: (i) what are the challenges and gaps in dementia research in Ireland?; (ii) what areas of dementia research should be prioritised and why?; and (iii) how can we enhance the relevance and impact of dementia research? Feedback was captured by facilitators at each table and published in an internal report by DRNI and the ASI.

This research forum acted as a first step in reaching consensus on dementia research priorities and the output of the forum was to convene a steering group in Autumn 2018, to further advance dementia research prioritisation. Participants from the original research forum were invited to join the steering group, and fifteen individuals joined. Regular steering group meetings were hosted by DRNI and The ASI between 2018 and 2019.

The Steering Group discussed various methods that could be used for a formal research prioritisation exercise, including the advantages and disadvantages of each approach. It was agreed that an existing global research prioritisation exercise (Shah et al., 2016) would be used and tailored where necessary to an Irish context.

The objectives of the Irish research prioritisation exercise were agreed, as follows:

Methods

The research prioritisation exercise consisted of: (i) an anonymous online survey of professionals (based on the WHO global survey, Shah et al., 2016); and (ii) a mixed-methods exercise for people living with dementia and family carers consisting of facilitated workshops that included research prioritisation exercises, general discussion which was captured, and a ‘money game’.

Sex and gender differences were not taken into consideration in the design of the study. The survey of professionals and the workshops were designed to garner information from participants on prioritisation of dementia reasearch themes, regardless of sex or gender. Participants in the survey of professionals were asked to self-report their gender.

Results

Discussion

Priority themes for professionals, and those with the lived experience of dementia, relate to the delivery and quality of care and services for people with dementia and carers, dementia prevention/ risk reduction, timely and accurate diagnosis of dementia, clinical–translational research (including both pharmacological & non-pharmacological interventions), understanding physiology & disease pathogenesis, and building public awareness and understanding.

Eight of the top ten research priorities from the survey of professionals were focused on the delivery and quality of care and services for people with dementia and carers. Family carers also prioritised care for people with dementia and carers in the money game, allocating the majority of the hypothetical research funding to this theme. One possible explanation for the survey results relates to the survey itself, where care-related research avenues are likely to score well on the specific weightings (potential for success; effect on burden reduction; potential for conceptual breakthrough; potential for translation; and equity). Another explanation for the prioritisation of care-related research is that it reflects the lack of available treatments, resulting in an emphasis on maximising care to optimise the available benefit for people with dementia and carers. It is interesting to note that workshop participants (people with dementia and carers) voted ‘better drugs and treatment’ as their top research priority, again possibly reflecting the current lack of available treatments for dementia.

There were some similarities between the Irish findings and those from the global survey conducted by Shah et al. (2016). The global survey found that three of the top ten research priorities were focused on delivery and quality of care for people with dementia and their carers. Another three of the top ten priorities were focused on prevention, identification, and reduction of dementia risk. Diversifying therapeutic approaches in dementia clinical trials was ranked joint 3^rd in the global survey, 7^th in the Irish survey and ‘better drugs and treatment’ was the top priority for people with dementia and carers who took part in the facilitated workshops. Another research avenue which was prioritised by both the Irish survey, and the global survey, was around the timely and accurate diagnosis of dementia in primary health-care practices, which was ranked 9th in the Irish survey and 2nd in the global survey.

Shah et al. (2016) report that several initiatives carried out in recent years in high-income countries have produced research recommendations for better detection, prevention, and treatment of dementia, and to improve the quality of life of people affected by dementia as well as their families and carers. These are in keeping with Ireland’s recommendations to focus on timely and accurate diagnosis of dementia, dementia prevention (ranked in the top 20 of the survey of professionals and ranked second as a theme for people with the lived experience of dementia) and diversifying therapeutic approaches in clinical trials. In relation to other countries’ focus on improving the quality of life of people affected by dementia as well as their families and carers, this is in keeping with the findings in the Irish survey of professionals, where eight of the top ten research priorities were focused on the delivery and quality of care and services for people with dementia and carers. Whilst it is interesting to compare findings with these other international initiatives, Shah et al. (2016) caution that the scope and methods used varied across these various initiatives in other countries, and therefore caution should be exercised when making comparisons.

Being mindful of the different scope and methods used in other initiatives internationally, it is nevertheless of interest to compare findings from a James Lind Alliance Priority Setting Partnership (PSP) exercise carried out by the UK’s Alzheimer’s Society in 2013 (Kelly et al., 2015). PSPs bring patients, carers and clinicians together to identify and prioritise research questions. Notably, members of the research community are excluded from the process, unless they are a clinician, patient or carer. In line with findings from this study and the global survey (Shah et al. 2016), seven of the top ten research questions were on the theme of care (including promoting independence, care in the hospital setting, maintaining nutritional intake, supporting carers, optimal timing for movement into a nursing home and end-of-life care). The other research questions in the top ten related to early diagnosis/ effective routes to diagnosis, interventions for non-cognitive symptoms of dementia and design features of dementia friendly environments. Comparing these findings to the Irish survey, Irish-based professionals also prioritised the timely and accurate diagnosis of dementia and effective interventions for the non-cognitive symptoms associated with dementia, both of which were ranked in the top ten priorities by professionals. In the Irish survey, research focused on dementia-inclusive communities was ranked 26^th and therefore wasn’t given as high a priority as the UK’s PSP exercise, which ranked this research in their top ten priorities. This difference may reflect the considerable work that has already been undertaken on dementia awareness and dementia-inclusive communities in Ireland in recent years, including the Health Service Executive’s Understand Together campaign (Galvin et al., 2020).

With regard to the professionals who completed the Irish survey, eighty-one (75%) of survey participants identified themselves as researchers, clinicians, or healthcare/ allied healthcare professionals, with seventeen participants (16%) not providing information on their professional role. This is similar to the global survey (Shah et al., 2016), where 88% (n=142) of participants identified themselves as researchers or clinicians. The remaining participants in the Irish survey (n=10; 9%) identified themselves as policy, patient advocacy, project manager or administration professionals.

In the Irish survey, twenty-six participants (24%) stated that they had personal experience as an informal (unpaid) carer for a person with dementia, in comparison to the global survey, where eighteen (11%) of the experts who participated also designated themselves as carers of someone with dementia.

Sex or gender analysis of survey participants was not conducted, as the main focus was garnering insight from professionals working in the area of dementia/ dementia research in Ireland, regardless of sex or gender. The absence of sex or gender analysis is not thought to be detrimental to the study.

Shah et al. (2016) emphasise that the research priorities identified in their global dementia prioritisation exercise will inform and assist the balance of research investment across research domains and quote a Lancet Editorial that states “the quest for new drugs must not overshadow improving today’s care and patients’ lives” (Lancet, 2014). This is also true for this Irish prioritisation exercise which provides research priorities across seven over-arching domains, spanning basic science, prevention, clinical and social research areas. Workshop participants spoke of the need for researchers to work collaboratively, avoiding duplication or overlapping of research, and the need to build on research:

Participants in the workshops (people with dementia and carers), scored ‘better drugs and treatment for people with dementia’ as their top priority theme and participants in the survey of professionals ranked research to diversify therapeutic approaches (e.g. pharmacological and non-pharmacological interventions) in clinical trials in their top ten priorities. Ireland’s first dementia clinical trial network (Dementia Trials Ireland; DTI), funded by the Health Research Board, has just been established and this will result in an increased focus on intervention studies for prevention and treatment of dementia, including both drug and non-drug approaches across the stages of dementia (i.e. preclinical to advanced stage).

Workshop participants scored ‘dementia prevention/risk reduction’ as their second highest priority theme and professionals included research avenues under this theme in their top twenty priorities. There has been a greater focus on dementia prevention and the influence of modifiable risk factors, over the last number of years. Our understanding of the potential for dementia prevention has been enhanced through key publications, such as the Lancet Commission reports (Livingston et al., 2017; Livingston et al., 2020) and the WHO Guidelines ‘Risk Reduction of Cognitive Decline and Dementia’ (2019). It is clear from the thematic research avenues contained in the survey of professionals that there is scope for more research in this rapidly developing area of dementia prevention.

Sex or gender information was not collected from workshop participants and therefore no analysis of sex or gender differences was conducted. The main focus of the workshops was to garner insight from people living with dementia and carers, regardless of sex or gender. The absence of sex or gender data from workshop participants is not thought to be detrimental to the study.

Although different methodologies were used for the survey of professionals and the workshops for people living with dementia and carers, there was a more narrow spread of scores found in the survey. Looking at the top twenty research priorities ranked by professionals, scores ranged from 0.81 to 0.89 (out of a possible score from 0 to 1). In comparison, there was a wider spread of scores amongst workshop participants when they were voting for their top research priorities, with their first priority (better drugs and treatment) receiving 31 votes, followed by ‘reducing the risk of developing dementia’ which received 17 votes. Similarly, in the ‘money game’ that carers participated in, the majority of funding (EUR 16,000) was allocated to ‘care for people with dementia and carers’, followed by just under a third of that amount (EUR 5,000) for the next theme ‘better drugs and treatments’.

It is interesting to note that workshop participants scored ‘better drugs and treatment’ as their highest priority, however for the ‘money game’ carried out with carers, participants allocated the majority of the hypothetical research funding (EUR 16,000) to the theme of ‘care for people with dementia and carers’, with ‘better drugs & treatments’ receiving the next highest amount (EUR 5,000). The emphasis on care reflects the findings in the survey of professionals, where eight of the top ten research priorities related to care themes. It appears that both themes (‘better drugs & treatments’ and ‘care’) are important for people living with dementia and carers. It would be worthwhile to conduct further workshops with people with dementia and family carers, to further investigate priorities amongst these two groups, exploring both commonalities and differences.

Conclusions

For the first time in Ireland, we have insight from professional stakeholders and those with the lived experience of dementia, regarding research avenues that should be prioritised. Findings from this exercise will be valuable to policymakers, funding agencies and the research community, as it informs the systematic allocation of investment in dementia research and reduces the likelihood of research waste.

Research priorities identified through this exercise, include themes around care, prevention/ risk reduction, diagnosis & disease monitoring, clinical-translational research (including both pharmacological & non-pharmacological interventions), understanding physiology & disease pathogenesis, and building public awareness and understanding. These priorities inform and assist the balance of research investment across the research domains of basic, clinical and social science. It is vital that collaborative interdisciplinary research is encouraged across the research domains as it is through such interdisciplinary research that we have the best chance to improve outcomes for people with dementia and their families.

Now that research priorities have been identified, it is vital that adequate funding is provided by our national funding agencies, in order to conduct the research. There are a number of crucial factors that heighten the urgency of prioritising research in the area of dementia, including an ageing population, the emotional and economic cost of dementia and the fact that delaying the age of onset, or the progression of dementia, is likely to have significant effects with regard to the enormous associated public health burden (Ritchie & Ritchie, 2012).

In terms of national policy, Dementia Research Network Ireland (DRNI) and The Alzheimer Society of Ireland (ASI) will continue to collaborate with the HSE’s National Dementia Office (NDO) to align research priorities from this prioritisation exercise with priority areas of the National Dementia Strategy and the work programme of the NDO. The NDO can guide the focus, or facilitate meaningful actions, in relation to specific thematic research avenues. DRNI and ASI will also continue to play an important role in facilitating interdisciplinary research, facilitating recruitment of research participants (through the TeamUp for Dementia Research service operated by ASI), facilitating transfer and exchange of research knowledge and linking research with policy and practice.

Dementia research priorities will change over time, as new treatments and interventions emerge, advances are made in relation to disease pathology and biomarker development, and research gaps are addressed in relation to care issues. Shah et al. (2016) call for WHO Member States, and civil society, to continuously monitor research investments and progress, as well as temporal and geographical trends in dementia incidence, prevalence, and burden. DRNI and The ASI aim to repeat this exercise at periodic intervals in order to provide up-to-date information on dementia research priorities to funders, policymakers and the research community, as well as feeding into international platforms such as the global dementia observatory.