Innovative methods for involving people with dementia and carers in the policymaking process800  |  Health Expectations. 2021;24:800–809.wileyonlinelibrary.com/journal/hexReceived: 10...

Innovations in Dementia support and care project






Innovative methods for involving people with dementia and carers in the policymaking process 800  |  Health Expectations. 2021;24:800–809.wileyonlinelibrary.com/journal/hex Received: 10 December 2020  |  Revised: 18 January 2021  |  Accepted: 31 January 2021 DOI: 10.1111/hex.13213 O R I G I N A L R E S E A R C H P A P E R Innovative methods for involving people with dementia and carers in the policymaking process Fiona Keogh PhD, Senior Research Fellow1  | Patricia Carney PhD, Senior Public Health Research Officer2 | Eamon O’Shea PhD, Professor of Economics and Director of CESRD1 This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. © 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd. 1Centre for Economic and Social Research on Dementia, National University of Ireland Galway, Galway, Ireland 2Department of Public Health Midlands, Health Service Executive, Tullamore, Ireland Correspondence Fiona Keogh, Centre for Economic and Social Research on Dementia, National University of Ireland Galway, Galway, Ireland Email: fiona.keogh@nuigalway.ie Funding information The work reported here was funded by two Knowledge Exchange and Dissemination awards from the Health Research Board in Ireland, #KEDS- 2018- 016 and #KEDS- 2018- 017. Abstract Background: There are few examples of public patient involvement in policymaking for groups whose ability to participate may be affected by a disability, particularly for people with dementia and their family carers. Principles of engagement and inclusion in democratic processes are as important for these groups as other citizens. We used two innovative methods to increase involvement of people with dementia and fam- ily carers in the policymaking process in Ireland, specifically in relation to impending legislation on home care. Method: A Policy Café was co- produced with people with dementia using a World Café methodology. A Carer's Assembly was co- produced with caregivers of people with dementia using a citizen's assembly model. Results: Ten people with dementia discussed policy developments they wanted to see implemented in relation to diagnosis and home care. Twenty- eight dementia car- egivers prioritized four topics: home care; respite services; psychosocial supports; and financial supports. Film and illustrations were used to create accessible messages for policy- makers to inform their decision making. Discussion: Involving people with dementia and carers in policy development requires time and creativity to facilitate and maximize their involvement. Co- production is essential to ensure the priorities of participants are identified, expressed and com- municated effectively. A cumulative sequence of events and messages can generate significant engagement with policy- makers. Policy- makers need to hear the direct and authentic voice of people with dementia and carers when faced with important policy decisions. Patient or public contribution: People with dementia and carers were involved in study design, data analysis and presentation. K E Y W O R D S carers, co- production, dementia, film, illustrations, policy 13697625, 2021, 3, D ow nloaded from https://onlinelibrary.w iley.com /doi/10.1111/hex.13213, W iley O nline L ibrary on [28/11/2022]. See the T erm s and C onditions (https://onlinelibrary.w iley.com /term s-and-conditions) on W iley O nline L ibrary for rules of use; O A articles are governed by the applicable C reative C om m ons L icense www.wileyonlinelibrary.com/journal/hex mailto: https://orcid.org/0000-0003-1400-1947 http://creativecommons.org/licenses/by/4.0/ mailto:fiona.keogh@nuigalway.ie http://crossmark.crossref.org/dialog/?doi=10.1111%2Fhex.13213&domain=pdf&date_stamp=2021-03-02      |  801KEOGH Et al. 1  | INTRODUC TION In the past two decades, much has been achieved in moving public and patient involvement (PPI) in health research from being a mar- ginal or niche activity to one which is a necessary criterion for re- ceiving research funding.1,2 The involvement of patients and citizens in health research and policy is supported by legal and regulatory requirements3 as well as having a moral and pragmatic footing.4 Progress has been made in the involvement of people with de- mentia in research, particularly in the last decade.5 Organizations such as the Dementia Engagement and Empowerment Project,6 the Alzheimer Society of Ireland7 and others have produced practical guidance on how best to involve people with dementia in research. Self- advocates such as Wendy Mitchell have been particularly strong on the two- way benefits of involvement in research and the personal benefits and benefits to the research process and research outcomes.8 Public involvement in health system planning and policymaking is increasingly recognized as a core activity in many industrialized countries, with an assumption that greater engagement by citizens in governance leads to more democratic and effective processes.9- 13 Patient and family engagement, in particular, is seen as offering a pathway towards better- quality health care, more- efficient care and improved population health.14 The latter outline a framework for patient and family engagement in health care at three levels: di- rect care; organizational design and governance; and policymaking. However, sometimes there are downsides to citizen participation, not least time and cost, and it does not always produce the desired results, either for the citizen participants or government.15 While there is growing evidence of patient engagement in de- mentia research, there is less evidence of the involvement of peo- ple with dementia or family carers in the policymaking process. A scoping review of the literature in preparation for the work reported here found no published journal papers on the involvement of peo- ple with dementia in the policymaking process. A report in the grey literature described the engagement of people with dementia in the development of 20 National Dementia Plans and Strategies, describ- ing a variety of types of engagement in the policymaking process from consultation processes to being members of the policymaking group.16 Where engagement does occur, it is often through advo- cacy organizations. It is important not to confuse advocacy and PPI; the latter connects the person with dementia and the policy- maker directly, while advocacy remains an indirect relationship, even when expertly communicated and delivered. A variety of mechanisms are used to support citizen engagement in policymaking, from quite simple approaches such as a written submission, to more sophisticated methods such as citizen juries.11 However, most methods are not readily accessible to the majority of people with dementia, or indeed to members of other marginalized groups.17,18 Nonetheless, policy is where the ‘big decisions’ are made which affect people with dementia every day in terms of the allo- cation of funding to health and social care services, as well as other areas such as transport, legal rights and more. Until recently, health policymaking in Ireland has been largely a top- down process with little direct involvement of the public and patient voice. People with dementia were involved in the develop- ment of Ireland's National Dementia Strategy (NDS)19 (DoH, 2014) indirectly, through a facilitated consultation process and the inclu- sion of the national advocacy organization (ASI) on the policymaking group. While progress has been made in the implementation of some actions in the NDS, such as raising awareness and staff training,20 there is frustration at the slow implementation of measures which would more directly benefit people with dementia.21 Although per- sonhood was referenced as an overarching principle in the NDS, much clearer direction on how personhood and person- centred care can be supported in practice and through regulation is necessary in Ireland.22 More direct and impactful methods of involving people with dementia in policymaking and policy implementation are nec- essary to ensure their concerns and priorities can be more rapidly realized in service delivery. As with many other researchers, a central focus of our work has been to involve people with dementia centrally in the work of our research centre and to have maximal impact on dementia policy in Ireland.23,24 Our understanding of how best to achieve both aims has developed over the past 5 years, in particular our appreciation that involving people with dementia does not just yield benefits in terms of the relevance of research questions and methods, but also pro- vides a pathway to greater policy impact. Focused national funding to develop PPI in research has aided the involvement of a range of patient groups, including people with dementia.25 It has always been a challenge to involve patients whose condi- tion can create additional barriers to involvement, such as people with communication difficulties; people whose capacity is chal- lenged; or people whose cognitive abilities affect their understand- ing of conceptual or complicated information. However, there are many examples of PPI in research which overcome these barri- ers.5,26,27 The use of creative and innovative methods can be partic- ularly useful for addressing barriers to involvement for people with different disabilities. In this paper, we describe two such methods for involving people with dementia and their carers in the policymaking process which combine the principles of co- production and PPI; a dementia policy café and a citizen's assembly for carers. The aim of this work was to create a pathway for the voice and experiences of people with dementia and family carers to influence upcoming legislation on home care— currently represented through advocacy but not through direct voice. We could identify no examples in the literature of the use of such approaches with people with dementia and caregivers to influence the policymaking process. 2  | METHOD 2.1 | Policy café Over a number of years, the authors had discussed and explored with people with dementia, pathways through which they and their 13697625, 2021, 3, D ow nloaded from https://onlinelibrary.w iley.com /doi/10.1111/hex.13213, W iley O nline L ibrary on [28/11/2022]. See the T erm s and C onditions (https://onlinelibrary.w iley.com /term s-and-conditions) on W iley O nline L ibrary for rules of use; O A articles are governed by the applicable C reative C om m ons L icense 802  |     KEOGH Et al. peers could be more directly involved in the policymaking process in a way which would empower them, present a forum for their views but also have a real impact on policy. The idea of a policy café was one which started to take shape as it was an accessible and engag- ing format and would allow for the direct capture of the voice and experience of people with dementia. The World Café is a participa- tory method with a flexible format that can be adapted to different circumstances. Seven design principles are set out by the World Café Community Foundation,28 which emphasize generating an informal, hospitable, creative space, encouraging and valuing everyone's con- tribution and identifying insights. Issues are discussed at round café tables, with a small number of participants for a set period of time and the insights from each table are shared with the larger group. The policy café method used in this study was adapted from the World Café model. 2.1.1 | Participants The Irish Dementia Working Group (IDWG) is an advocacy group of people with a diagnosis of dementia who work to share their experiences and highlight issues important to them. The IDWG formed in 2012 and now has four regional groups with a total of 40 active members. Twelve members of the group were approached by the advocacy organization (ASI) that supports the group, to identify their willingness to be involved in the policy café. Using the knowledge of the ASI facilitator of the group, potential par- ticipants were selected based on their availability and their ability to participate in the exercise for the whole event. An information sheet was sent to each person and their carer/supporter. Two of those approached were not available and ten members agreed to participate, five females and five males, from urban and rural environments, including people with young- onset and later- onset dementia. 2.1.2 | Topic identification and development The topics to be discussed were identified through examining con- sultations and materials which members of the IDWG had helped produce for other work. Discussions were held through (pre- Covid19) face- to- face meetings and phone calls with two mem- bers of the IDWG to identify topics and associated questions to be addressed in the policy café and two topics were identified: home care and diagnosis with post- diagnostic supports (PDS). Home care is a current and high priority policy area as the Department of Health in Ireland is currently engaged in a review of the funding and regulation of home care as part of an ongoing legislative pro- gramme of reform.29 The development of diagnostic facilities and processes in Ireland is a high priority for the National Dementia Office and is also the subject of discussions around budgetary planning at a national level. Therefore, there were identifiable fo- rums (such as planning committees and review groups) with whom to communicate the issues identified from the café and they were timely and high priority issues for policy- makers and decision- makers as well as people with dementia. As recommended in the World Café guidelines, questions were developed from these top- ics and were posted on the wall of the meeting room and on each table (see Figure 1). 2.1.3 | The event A hotel venue was selected