Dementia research in Ireland: What should we prioritise?

Background Dementia research prioritisation allows for the systematic allocation of investment in dementia research by governments, funding agencies and the private sector. There is currently a lack of information available in Ireland regarding priority areas for dementia research. To address this gap, a dementia research prioritisation exercise was undertaken, consisting of an online survey of professionals in the dementia field and workshops for people living with dementia and family carers. Methods (1) An anonymous online survey of professionals, based on an existing WHO global survey: the global survey was adapted to an Irish context and participants were asked to score 65 thematic research avenues under five criteria; (2) A mixed-methods exercise for people living with dementia and family carers: this involved two facilitated workshops where participants voted on the research themes they felt were important to them and should be addressed through research. Results Eight of the top ten research priorities in the survey of professionals ( n=108) were focused on the delivery and quality of care and services for people with dementia and carers. Other research avenues ranked in the top ten focused on themes of timely and accurate diagnosis of dementia in primary health-care practices and diversifying therapeutic approaches in clinical trials. Participants in the workshops ( n=13) ranked ‘better drugs and treatment for people with dementia’, ‘dementia prevention/ risk reduction’ and ‘care for people with dementia and carers’ as their top priority areas. Conclusions Findings from this prioritisation exercise will inform and motivate policymakers, funders and researchers to support and conduct dementia-focused research and ensure 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.

with dementia and family carers.

Methods
(1) An anonymous online survey of professionals, based on an existing WHO global survey: the global survey was adapted to an Irish context and participants were asked to score 65 thematic research avenues under five criteria; (2) A mixed-methods exercise for people living with dementia and family carers: this involved two facilitated workshops where participants voted on the research themes they felt were important to them and should be addressed through research.

Results
Eight of the top ten research priorities in the survey of professionals (n =108) were focused on the delivery and quality of care and services for people with dementia and carers.Other research avenues ranked in the top ten focused on themes of timely and accurate diagnosis of dementia in primary health-care practices and diversifying therapeutic approaches in clinical trials.Participants in the workshops (n=13) ranked 'better drugs and treatment for people with dementia', 'dementia prevention/ risk reduction' and 'care for people with dementia and carers' as their top priority areas.

Conclusions
Findings from this prioritisation exercise will inform and motivate policymakers, funders and researchers to support and conduct dementia-focused research and ensure 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.

Introduction
Prevalence rates for the number of people living with dementia in Ireland range between 0.78 -1.1% (approximately 100 in 100,000), 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 represent 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 economic 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 impact of the 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 impact 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 HRB and the Health & Safety Executive's (HSE) National Dementia Office, 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 HSE's National Dementia Office 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.

Amendments from Version 1
Following reviewer feedback, this article has been updated to include: the use of more positive language where appropriate; clearer reporting of dementia prevalence rates; more information on the demographic information collected; additional information on scoring and the money game in the workshops to avoid any confusion; movement of some information from the discussion section to the results section to enhance flow; and clarification on completion rates for the survey of professionals.In addition, some formatting of text and table titles was carried out to enhance the flow of the article, avoid repetition of information, communicate some points more clearly and correct grammar.

Any further responses from the reviewers can be found at the end of the article
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: (i) To elicit feedback from relevant professional stakeholders with experience and/or knowledge of dementia/ dementia research on the priority areas for dementia research in Ireland.
(ii) To elicit feedback from people living with dementia and family carers on what areas of dementia research they would like to see prioritised in Ireland.
(iii) To identify the research avenues that professional stakeholders consider to be most important based on their: potential for success; effect on burden reduction; potential for conceptual breakthrough; potential for translation; and equity.
(iv) To provide information to research funders, policymakers and the research community regarding what research should be prioritised, to ensure 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.

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 research themes, regardless of sex or gender.

(i) Survey of professionals
To ensure that the global dementia research prioritisation survey of Shah et al. (2016) was suitable for an Irish context, steering group members met in three smaller sub-groups, to discuss each thematic research avenue, with each sub-group reviewing 2-3 over-arching themes.The aim of these sub-group meetings was to review the global survey and decide if any thematic research avenues should be added, altered or removed, to suit the Irish context and make the survey more user-friendly and succinct.It was agreed that the Irish survey should remain as faithful as possible to the global survey.Most of the thematic research avenues were unaltered; however, some were re-worded slightly or added to the Irish survey.In addition, some thematic research avenues from the WHO survey were split into two or three separate research avenues in the Irish survey.
See Table 1 for details of changes made.
The final survey, consisting of 65 thematic research avenues, was uploaded to SurveyMonkey®.Steering group members completed the survey on a pilot basis, to ensure that there were no technical issues or formatting errors.This also allowed for feedback on the time required to complete the survey.As a result of the pilot, it was estimated that the survey would take approximately 30-45 minutes to complete.
The anonymous survey collected some basic demographic information.including professional role, institution/organisation, geographical location, years of experience working in the dementia field, area of research, personal experience as an informal (unpaid) carer for a person with dementia and gender.This information was collected to ensure there was a good mix of professionals undertaking the survey, a good range of experience in the field amongst participants, as well as a good geographical spread.It also allowed for some comparisons with the global study (Shah et al., 2016).Participants were then provided with a list of 65 thematic research avenues and asked to score each one (rate their level of agreement) under five different criteria: (i) potential for success -is the proposed research likely to be successful in reaching the proposed endpoint within the next decade?; (ii) effect on burden reduction -has this research potential to markedly reduce the burden of dementia?; (iii) potential for conceptual breakthrough -is the research likely to result in a paradigm shift/ be a 'game changer'?; (iv) potential for translation -is the research likely to lead to practical application, implementation of new knowledge and/or be deliverable at scale?; (v) equity -is the proposed research outcome likely to benefit people as a whole in an equitable/ fair manner?
Participants were asked to choose one answer: "Yes"; "No"; or "Not Sure/I do not know", for each of the five criteria listed above.
(ii) Workshops for People living with Dementia and Family Carers Two facilitated workshops were carried out with people with dementia and family carers in December 2019, in order to explore participants' views and perspectives on areas of dementia research they feel should be prioritised. .Thematic research avenues that were used in the survey for professionals were presented as questions, in order to explain the themes to a public audience.The six over-arching themes were colour-coded to enable clarity and avoid confusion, and each theme was explained by the facilitator.In the carers' workshop, the themes and questions were discussed as a group, while in the workshop for people with dementia, the various themes and questions were discussed in pairs.
Participants with dementia were supported by staff from The ASI and DRNI, as well as the facilitator, to ensure their understanding of the various themes and questions.Participants were given the opportunity to express their views on the areas of research they felt should be prioritised, and to hear other people's perspectives on the various themes and questions.
Each participant voted on the research questions they felt were important to them and should be addressed through research, by placing a sticker beside relevant questions.
The workshop with carers concluded with a money game.
Respondents were each given a hypothetical budget of EUR 5,000 to invest proportionally in different themes.Participants were invited to put the money into one theme or spread it among various themes.This exercise was another means of capturing participants' views.

Participants (i) Professional Survey
The population of interest for the survey was relevant professional stakeholders working in the area of dementia/dementia research in Ireland and included clinicians, health and social care professionals, researchers, representatives from government agencies, policymakers and representatives from the community and voluntary sector.A convenience sample (n=150) of members of DRNI and other relevant stakeholders in the field were invited by email to take part in the online survey.Steering group members also sent an invitation email to colleagues within their network who may be interested in taking part in the survey.Details of the survey were posted on DRNI's and The ASI's websites and social media accounts (DRNI and The ASI Twitter pages), to allow for additional stakeholders not

And
Identify the range of supports required to most effectively meet the needs of family/unpaid carers of people with dementia.

Quality of Care for People with Dementia and Their Carers
Establish norms and standards for the highest quality of care in residential and nursing homes and approaches to assist families of people with dementia to determine the optimal time to consider placement Develop clinical guidelines and standards for the delivery of dementia care in residential care settings and in the community.

And
Identify how to best support people with dementia and their carers in deciding whether and when to enter long-term care.This resulted in five numbers (one for each of the five scoring criteria) ranging between 0 and 1.Higher scores reflected respondents' views that a given research avenue would be likely to fulfil a given scoring criterion, for example 'potential for success': the proposed research would likely be successful in reaching the proposed endpoint within the next decade; or 'effect on burden reduction': the research has potential to markedly reduce the burden of dementia on patients, caregivers and society as a whole; whereas lower scores reflected respondents' views that a given research avenue would be unlikely to fulfil a given scoring criterion.An overall priority score was then calculated by averaging the five intermediate scores.

Delivery of
In addition, the proportion of 'Yes', 'No' and 'Not sure/I do not know' responses for each research avenue was counted and the frequency of the most common response for each scoring criterion was noted.The mean of the frequencies across the five criteria was calculated to provide an average expert agreement (AEA) score for each research avenue, which complements the overall priority score, providing a measure of cohesiveness or dispersion in the experts' opinion.
For the facilitated workshops, ASI staff collated the scoring sheets for both workshops.The ASI engaged a professional transcribing service to transcribe the discussions that arose during the workshops.

Demographics for survey respondents
One hundred and eight professionals completed the survey (n=108), which is more than twice the number of respondents anticipated.Not all participants completed all parts of the survey, with respondent numbers ranging from 41 to 62 across the themes.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.The remaining participants in the survey (n=10; 9%) identified themselves as policy, patient advocacy, project manager or administration professionals.The majority of respondents (33%) were working in an academic/ research setting, followed by a University Hospital (19%), community healthcare (12%) and a memory clinic (7%).Seventeen respondents (16%) did not identify their type of institution/ organisation.With regard to geographical location, a significant majority of respondents (48%) were based in Leinster, with 12% specifying 'nationwide' and 16% providing no response to this question.The remaining 20% of respondents were based in Munster, Connaught and UK & Northern Ireland.Twenty-six participants (24%) sated that they had personal experience as an informal (unpaid) carer for a person with dementia.See Table 2 for details.
Top 10 research priorities (for professionals) Eight of the top ten research priorities were focused on the delivery and quality of care and services for people with dementia and carers.Other thematic research avenues ranked in the top ten focused on themes of diversifying therapeutic approaches (e.g.pharmacological and non-pharmacological interventions) for discovery and development in clinical trials; and timely and accurate diagnosis of dementia in primary health-care practices (see Table 3).
In relation to the over-arching theme of 'quality of care for people with dementia and carers', priority areas were focused on: 1) the effective education, training and support of professional carers and health & social care professionals; 2) effective interventions for non-cognitive symptoms associated with dementia; 3) the supports required to meet the needs of family/ unpaid carers; 4) effective strategies and supports for enabling people with dementia to maintain their interests and abilities for as long as possible; and 5) the development of clinical guidelines and standards for the delivery of dementia care in residential care settings and in the community.In relation to the over-arching theme of 'delivery of care and services for people with dementia and carers', priority areas were focused on: 1) how to involve people with dementia and their carers in research prioritisation and funding, and the design and delivery of services; 2) identifying features of adapted care systems for people with dementia during hospital admission and determining how best to promote their implementation; and 3) determining how to address gaps in healthcare for people with dementia and investigating the quality of life and cost benefits of a more effective holistic integrated medical care.

Top 20 research priorities
In addition to the top 10 priorities discussed above, the top 20 research priorities were reviewed.Under the theme 'delivery of care & services for people with dementia and their carers', priority areas included: 1) management of noncognitive symptoms of dementia; 2) identifying models of effective end-of-life care; 3) identifying the barriers to equitable access to care; 4) determining optimal case management for people with dementia; and 5) identifying optimal models for organising and delivering care and support to people with dementia and carers across the disease course.Priority areas under the theme of 'dementia prevention/ risk reduction' included: 1) understanding the influence and interactions of co-morbidities on disease course; 2) exploring approaches for primary and secondary prevention of dementia; and 3) determining the feasibility, effectiveness, and best way of delivering interventions to alter/modify risk factors for dementia.
In relation to the theme of 'pharmacological and nonpharmacological clinical-translational research', the research avenue in the top twenty priorities was focused on: 'promoting collaborations to explore more efficient trials, adaptive trials, and combination therapy for dementia.A top twenty priority under the theme of 'physiology and disease pathogenesis' was: 'understanding the contributions of vascular conditions to diseases causing dementia'.
Top 4 research avenues per over-arching theme Priority scores for the 65 thematic research avenues in the survey of professionals ranged from 0•57 to 0•89 (see Analysis section for details of how scores were calculated).Higher scores (closer to 1) reflected respondents' views that a given thematic research avenue would be likely to fulfil a given scoring criterion (e.g.potential for success, effect on burden reduction etc.).See Table 4 for details of the top four thematic research See Table 5 for results of the priority scoring exercise that took place at the workshops.
Results for the 'money game' carried out with carers are detailed in Table 6.The theme that scored the highest in this exercise was 'care for people with dementia and carers', followed by 'better drugs & treatment for people with dementia, 'public awareness & understanding' and 'diagnosing dementia earlier or better'.The remaining themes of 'reducing the risk of developing dementia' and 'effects of dementia on bodies and brains' were not allocated any money by participants in this exercise.
Table 7 contains details of all results from the survey of professionals, across the seven research themes.
Results for the 'money game' carried out with carers are detailed in Table 6.The theme that scored the highest in this exercise was 'care for people with dementia and carers', followed by 'better drugs & treatment for people with dementia, 'public awareness & understanding' and 'diagnosing dementia earlier or better'.The remaining themes of 'reducing the risk of developing dementia' and 'effects of dementia on bodies and brains' were not allocated any money by participants in this exercise.

Discussion
Priority themes for professionals, and those with the lived experience of dementia, relate to the delivery and quality

Research Theme No. of Votes
Better drugs and treatment for people with dementia 31 Reducing the risk of developing dementia -How can we affect the risk factors for dementia?

17
Building public awareness and understanding 14 Care for people with dementia and carers 11

Effects of dementia on bodies and brains 9
Diagnosing dementia earlier or better 7 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 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 twenty 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 Irish study and the global survey (Shah et al. 2016), seven of the top ten research questions in the UK PSP study 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 of the UK PSP study related to early diagnosis/ effective routes to diagnosis, interventions for non-cognitive symptoms of dementia and design features of dementia friendly environments.Comparing these UK PSP 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 PSP study, 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 HSE's Understand Together Understand Together campaign (Galvin et al., 2020).
With regard to the professionals who completed the Irish survey, 75% (n=81) of survey participants identified themselves as researchers, clinicians, or healthcare/ allied healthcare professionals.This is similar to the global survey (Shah et al., 2016), where 88% (n=142) of participants identified themselves as researchers or clinicians.The majority of respondents in the Irish survey (33%) were working in an academic/ research setting, followed by a University Hospital (19%), community healthcare (12%) and a memory clinic (7% 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.
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, this was ranked in second place for funding, after 'care for people with dementia and carers'.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 investigate priorities amongst these two groups, exploring both commonalities and differences.
Although a EUR35,000 hypothetical budget was given to the seven carers (EUR5,000 each), and all carers used some or all of their budget, only EUR25,000 was allocated to four of the six research themes.An exploration of why some budget remained un-used was not carried out at the workshop although this would be interesting to explore in any future workshops with carers.
Sex or gender analysis of survey participants was not conducted and sex or gender information was not collected from workshop participants.For both the survey and workshop, the main focus was garnering insight from participants, regardless of sex or gender.The absence of sex or gender analysis is not thought to be detrimental to the study.

Strengths and limitations
Survey respondents consisted of a convenience sample of members of DRNI and other relevant stakeholders in the field who were invited by email to take part in the online survey.Details of the survey were posted on DRNI's and The ASI's websites and social media accounts and some respondents may have accessed the survey through these avenues.Although 108 people responded to the survey, it is likely that some people working in the area of dementia/ dementia research in Ireland were not aware of the survey or did not get an opportunity to complete it.It is recommended that the survey is repeated at periodic intervals in order to provide an opportunity for anyone working in the area of dementia/ dementia research to take part.
Given the good balance of professionals who took part in the survey, it is likely that respondent bias has been reduced.However, given that the majority of survey participants (75%) identified themselves as researchers, clinicians, or healthcare/ allied healthcare professionals, it is possible that this group influenced the results of the survey in comparison to the smaller group of policy, patient advocacy, project manager & administration professionals.However, the mean expert agreement was higher than 70% for sixteen of the top twenty priorities, which is a similar finding to the global survey conducted by Shah et al., 2016.The survey is considered to be transparent, systematic, rigorous, replicable and democratic, and limits the effects of personal interests or biases (Shah et al., 2016).One of the strengths of this prioritisation exercise is that it did not merely ask professionals what areas of dementia research should be prioritised, but rather asked them to consider five important criteria when determining research priorities, as follows: (i) potential for success -is the proposed research likely to be successful in reaching the proposed endpoint within the next decade?;(ii) effect on burden reduction -has this research potential to markedly reduce the burden of dementia?; (iii) potential for conceptual breakthrough -is the research likely to result in a paradigm shift/ be a 'game changer?'; (iv) potential for translation -is the research likely to lead to practical application, implementation of new knowledge and/or be deliverable at scale?; and (v) equity -is the proposed research outcome likely to benefit people as a whole in an equitable/ fair manner?Another strength of this exercise is the fact that people living with dementia and family carers were involved in determining research priorities, however people at risk of dementia (preclinical and those with mild cognitive impairment) were not included, which is a limitation.
Not all participants completed all parts of the survey, with respondent numbers ranging from 41 to 62 across the themes.
It is likely that respondents completed the sections of the survey that reflected their area of research interest and expertise.
Respondent numbers decreased as the survey progressed, possibly indicating a level of respondent fatigue.It does not appear that this influenced the ranking of research avenues, as the carefocused themes appeared last in the survey but were ranked the highest by survey respondents.For future prioritisation exercises, it is recommended that the survey is split into four sub-surveys, which could be administered at different timepoints.
Only one research prioritisation workshop took place with people living with dementia, and only one with family carers, resulting in small numbers of PPI representatives (n=13) taking part in this exercise, mainly from Dublin and the surrounding area.Plans to conduct more workshops were curtailed due to the COVID-19 pandemic.When the prioritisation exercise is repeated, more workshops for people living with dementia and family carers should be facilitated, with better geographical spread and including those at risk of dementia.

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.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.
Participants -I find it odd that you day how many participants there were in the facilitated workshops, but not for the professional survey -instead giving this number in the results section.It's picky, but for consistency it feels like you should either give the numbers for both activities in the participants section or the results section, rather than one in either.
Demographics for survey respondents -in the last sentence before Table 2, I think you mean to say '(24%) stated' not '(24%) sated' General point about consistency -sometimes when using a '/' you have a space after it and sometimes you don't, e.g.and/or and/ or.I don't mind which you do, but I think you should be consistent throughout the article and in the tables.Priority ranking by people living with dementia and carers -in the second quote the bit saying who it's by is on a separate line rather than directly after the quote as per the other quotes.
Table 7 -as this relates to the ranking by professionals, this should be earlier in the article rather than in the section reporting on the priority ranking by people living with dementia and carers.It's not relevant where it is.
The paragraph before Table 5 which talks about the money game results is repeated twice.One of the paragraphs can be deleted.In that paragraph, there is no ' at the end of the 'better drugs…theme.
Consistency point -in the final few paragraphs of your discussion section, you start by saying 'EUR 16,000' and 'EUR 5,000' (i.e. with a space after EUR), but later you say 'EUR35,000', 'EUR5,000' and 'EUR25,000' (i.e.no space after EUR).Please be consistent.
Competing Interests: No competing interests were disclosed.
Reviewer Expertise: Dementia I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.

Francesco Di Lorenzo
Hospitalisation and Health Care Santa Lucia Foundation, Rome, Italy This is an interesting report that sheds light on the vision that people working on dementia has on which priorities should be taken in account in Ireland.
The paper is well written and I just have some comments, which I think their consideration could improve the quality of the paper.
Firstly, as a researcher clinician, I think that one of the most important priority is a timely diagnosis.Nowadays, we are in the era of anti-amyloid drugs which have the potential to impact the course of the disease (even if i have to admit the data presented are not very convincing).However, this recent pharmacological advancement, together with other possible treatments, urge the need of a timely diagnosis.We should not forget about that; also because much more clinical research can be performed on patients in order to improve knowledge on the disease.For example, lumbar puncture examination is able to give us insights into the levels of the pathological proteins involved in the pathophysiology of AD (DOI:10.1111/cns.12476 1 ) and this data can be associated to other clinical means which can help in better stratifying the patient, especially in clinical terms (doi: 10.1159/000090631 2 ).
Another issue I would emphasize is the concept of frailty among people with dementia and especially AD (DOI:10.2174/1871527311312040010 3 ).The identification of these patients would help the clinicians in alleviating their symptoms and reducing the burden of caregivers

Jennifer Bray
University of Worcester, Worcester, England, UK There were a few areas where I felt the work could have been presented more clearly or more detail could have been provided to help the reader better understand what was done.Apart from a possible lack of detail at times, I did not have any particular issues with the study design.As per my comments below, more detail could be provided to make the methods and analysis clearer.At present I'm not sure it would be possible to replicate the work.More detail would help the reader to fully interpret the findings and provide context, such as the number of people who responded to each theme.The source data can be requested but is not automatically provided in the article.
The conclusions are clearly based on the results, but the points raised in my comments make it tricky to appreciate the full context.
It may be that everything is fine and it's just how it's been presented that raises a few queries for me, but in its current format the level of detail and lack of consistency in some areas mean that it's difficult to have full confidence in the findings.I think the findings are interesting and important, but just that extra bit of work to strengthen the article would give them more weight.

Comments to consider and address:
I would suggest being aware of the language used to avoid automatically being negative.

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For example, in the abstract at the end you talk about 'conduct research to address the burden of dementia'.Please find an alternative way to express the point, such as 'conduct dementia-focused research'.If you are talking about the economic burden on the healthcare system (as suggested in your main introduction) please make this clear.At present it reads as a personal/emotional burden on families.I'm not convinced by the use of 'burden' in your introduction either.
In your introduction you talk about prevalence rates.I would expect to see this expressed as a % or so many people per 10,000 or 100,000 but you've just given the overall number of people with dementia in Ireland.You may have got those numbers by using the prevalence rates, but for me 'between 39,272 and 55,266' are not prevalence rates in their own right.

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When describing the anonymous survey, is it possible to give an indication the types of basic demographic information collected, and why it was needed?
○ On page 5 you repeat a sentence about recruitment.In the first column when talking about the workshops you say how participants were recruited.In the second column when talking about the workshop participants you say how they were recruited.I would suggest the first instance could be removed as it makes more sense in the second instance.

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There is also some repetition in terms of saying how many people were involved in each workshop (on page 5 first column and page 6 first column).It feels like you could just say it in one place.
○ Analysis -apologies if I've missed this, but it would be useful to have more information about the scoring of the workshops.It might just be a case of clarifying how many questions were within each of the six over-arching themes, because on seeing  3).Is there a reason why the fifth priority area isn't listed?
Top 20 research priorities -I initially found this confusing as it seemed very similar to the top 10, especially as you talk about eight of them in particular.It might be slightly clearer if you say something like 'included a total of eight research avenues'.When talking about 'clinical-translational research' it might be worth using the full title given in Table 3 to help the reader tie everything together.It might also be helpful to reorder the start of the paragraph to make it read better.For example, something like 'In addition to 'diversify…trials' which was ranked in the top ten, the other research avenues relating to the theme of 'clinical-translational research (full title)' in the top 20 priorities…' ○ I think it would be beneficial to have some consistency.You talk about 'Research domains' in Table 3 but in the text you talk mainly about over-arching themes.On page 8, column 2 you even switch between the two terms within the same sentence.

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Table 6 -It might be useful to say how much the money allocated is out of.I know you had 7 carers and they had EUR 5,000 each, so theoretically it should be out of EUR 35,000, but reminding the reader of this would help to provide context.It's interesting, and a bit confusing, therefore that only EUR 25,000 appears to have been allocated.The reason for this disparity should be explained (e.g. if only 5 carers used their money, say it).Listing all six research domains and showing that the final two got no money allocated would also be beneficial to give the full picture.

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Page 17, both columns -do you actually need the two paragraphs about 'Sex or gender' as you basically already said about this in the methods section?I know the professionals one is about analysis rather than collecting the information in the first place (which makes me wonder why you bothered to ask about their gender if you weren't going to do anything with the info), but still.

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Page 18, column 1 -is there a better way to express what you're saying in the first paragraph that maybe doesn't involve giving the EUR values as you've only just given those values in the paragraph at the end of page 17.Maybe focus on better drugs and treatment being the highest priority for workshop participants, but was second highest in the money game carried out with carers.It just feels a bit repetitive at the moment even though you are actually saying something different in the two paragraphs.

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Page 18, column 2 -when you talk about completion rates, it would be useful to provide more clarification what you mean.The way it reads at the moment suggests that although 108 people responded to the survey, some themes only had 41 people responding, with at most 62 people responding to other themes.This doesn't seem like a great response rate, and feels like the sort of thing that should be mentioned in your results.Maybe when presenting the rankings or overall scores in the tables there should be some indication of ○ how many responses they are based on.It would be easy for the reader to assume that something was ranked 1 st across all 108 people, so if it's actually just based on 50 people that presents a different picture.
Also, you say that respondent numbers decreased as the survey progressed, so it would be interesting to know the order in which the research domains were presented as this could have an impact.For example, were the themes that people ranked highly to ones earlier in the survey?Could some themes not be considered a priority because people didn't actually get that far through the survey, or were fed up by that point and not paying enough attention? ○

Minor points
Introduction -should it be 'represent a significant' rather than 'represents a significant'?
○ Introduction -should there be a ' -' after 'both emotional and economic' rather than a ','?Similarly, when saying 'Comparing these findings to the Irish survey' it might be better to say 'Comparing these PSP findings to the Irish survey' or however you want to refer to the PSP study -you say 'the UK's PSP exercise' later on, so maybe choose a consistent phrase and stick with that throughout this section.
Page 19, column 1 -why are you setting up the DRNI and ASI abbreviations here (again), when you've been using them throughout the article?Reviewer Expertise: Dementia I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above.

Reviewer Report 02 1 Reviewer
November 2023 https://doi.org/10.21956/hrbopenres.15144.r36904© 2023 Lorenzo F. This is an open access peer review report distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.Francesco Di Lorenzo Hospitalisation and Health Care Santa Lucia Foundation, Rome, Italy I am happy with authors review Competing Interests: No competing interests were disclosed.Reviewer Expertise: Dementia I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.Version Report 11 July 2023 https://doi.org/10.21956/hrbopenres.14809.r34695© 2023 Lorenzo F. This is an open access peer review report distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Is the work clearly and accurately presented and does it cite the current literature?PartlyIs the study design appropriate and is the work technically sound?YesAre sufficient details of methods and analysis provided to allow replication by others?PartlyIf applicable, is the statistical analysis and its interpretation appropriate?PartlyAre all the source data underlying the results available to ensure full reproducibility?NoAre the conclusions drawn adequately supported by the results?YesCompeting Interests: No competing interests were disclosed.

Table 4 . Top 4 thematic research avenues for each over-arching research theme and overall ranking for each thematic research avenue.
2ndDetermine the feasibility, effectiveness and best way to enhance awareness and understanding, and reduce stigma, of dementia at an individual, community and society level (across all age groups, including school children).

Physiology and Progression of Normal Ageing and Disease Pathogenesis
Joint 3rdIdentify the most effective strategies and supports for enabling people with dementia to maintain their interests and abilities for as long as possible.

Delivery of Care & Services for People with Dementia and Their Carers
of global fight.And you know a great result can come from a small country like Ireland." (family carer) "[A]lot of that kind of collaboration happens (reference to clinical trials) and it could be just that Irish people get a chance to be involved with a drug trial.So it could be starting in Germany but you know are and to tell people " (person living with dementia)Participants referred to the need to engrain messaging about risk factors in young people as they grow up, noting: "I don't think society is necessarily ready to change their behaviours."(person living with dementia) "Too often it's about managing the dementia and not the person… So it's what are the unmet needs and how can they best be helped… it can be easy to hand out a drug, it can be a little bit more challenging to find out what's going on" (person living with dementia)

Table 6 . Results of Money Game Conducted with Carers.
Note: A hypothetical budget of EUR35,000 was given to the group of 7 carers

Table 2 -
in the 'participants' column there looks like an odd line after one result '(33.33%)|'Top 20 research priorities -part of the first theme is not in bold.You also say 'top 20' and 'top twenty' which again comes back to consistency.In the 2 nd paragraph in this section, you've got a ' before promoting collaborations, but I can't see a matching '.I assume it should come after therapy for dementia.

Yes If applicable, is the statistical analysis and its interpretation appropriate? Yes Are all the source data underlying the results available to ensure full reproducibility? Yes Are the conclusions drawn adequately supported by the results? Yes Competing Interests:
No competing interests were disclosed.

have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above.
Reviewer Report 29 June 2023 https://doi.org/10.21956/hrbopenres.14809.r34689© 2023 Bray J.This is an open access peer review report distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Table 2 .
Table5I was confused about how one of the research domains could have 31 votes from 13 participants.It might sound silly, but it shouldn't be up to the reader to try and work it out for themselves by looking at Table7, especially when the research domains/over-arching themes have different titles for the survey and the workshops.It makes it feel like collecting the demographic information wasn't worth doing as you pretty much ignore it.If you moved the actual information from page 17 to here it would make more sense, then in your page 17 discussion you could indicate how your participants compared to the global survey.E.g.'The majority of professionals in both the Irish and global surveys identified themselves as researchers or clinicians at 75% (n=108) and 88% (n=142) respectively'.This might be a bit simplistic, but presenting your demographic results for the first time in the discussion just feels odd.Also, it would be good to have something in the text about the other demographics that you captured, rather than just leaving it to the reader to look at Table2.I'm not saying you need to do any deep analysis, but one short paragraph to give an overview of who the professionals were is all it would need.services' is more accurate.Using the full domain title in Table3would also be better (and more consistent with Table4) rather than just 'quality of care'.I'd suggest listing the other two themes in the reverse order as 'timely and accurate diagnosis' was ranked lower than 'diversifying therapeutic approaches' but you've listed it first which implies the opposite.Similarly, when listing the four priority areas within quality of care, I'd put them in the order they were ranked to give a more accurate picture.(If they are in order in the text, you need to change Table ○Demographics for survey respondents -a lot of the information given on page 17 is what I would expect to find here.At the moment it's basically 108 people took part and have a look at ○ Top 10 research priorities -it is probably worth clarifying that this is for professionals.Also, based on the research domain titles I'd suggest that 'focused on the quality of care and ○ delivery of

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Introduction, column 2 -you've already set up the abbreviation HRB in column 1, so why do you not use it at the top of column 2? Also, I'm confused by the use of HSE as it looks like it's set up as an (odd) abbreviation of National Dementia Office twice within one paragraph.If it's actually a different abbreviation it needs to be expanded the first time it's used.Various places -when you use / do you have spaces around it or not?At the end of introduction column 2 you use 'and/or' and 'dementia/ dementia' in the same sentence.Please be consistent.Page 6, column 2 -in your second paragraph about ethics I would suggest saying that 'Ethics approval was not required for the workshops' rather than 'not obtained' as the current wording immediately made me think you'd done something wrong and unethical.Also, you've already set up the DRAT and DCCN abbreviations on page 5, column 2, so you don't need to do it again here, just use them.Top 4 research avenues -it feels odd to give a range of scores with the higher score first.I would expect to see 'from 0.57 to 0.89' but I'm willing to be overruled on this.(although having seen later on page 17 that you say 'from 0.81 to 0.89' it feels like you should be consistent in terms of whether you give the higher or lower score first).It also seems odd to jump from Table4to Table7.I can see why it's done based on where it was possible to position the tables, but it just makes me as a reader wonder what happened to tables 5&6.not sure you need to keep reminding the reader that the workshop participants were '(people with dementia and carers)', especially as the first time you do this is just after the title 'Priority ranking by people living with dementia and carers'.In link with findings from this study and the global survey' it might be useful to make it clear that 'this study' relates to the PSP study not the work ○ you've done.It probably wouldn't be an issue normally, but the placement of Table7breaks the flow for the reader making it trickier to keep track of what you are talking about.
○Introduction, column 2 -is it 'steering group' or 'Steering Group' as you seem to use both?○ ○ Page 5, column 1 -in your list of criteria why do ii and iii not have '?' at the end?○ ○ ○ ○ I'm ○ Page 17, column 1 -when saying '