Innovative methods for involving people with dementia and carers in the policymaking process
800 | Health Expectations. 2021;24:800–809.wileyonlineli
ary.com/journal/hex
Received: 10 December 2020 | Revised: 18 January 2021 | Accepted: 31 January 2021
DOI: XXXXXXXXXX/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
Co
espondence
Fiona Keogh, Centre for Economic and Social
Research on Dementia, National University
of Ireland Galway, Galway, Ireland
Email: XXXXXXXXXX
Funding information
The work reported here was funded by two
Knowledge Exchange and Dissemination
awards from the Health Research Board
in Ireland, #KEDS XXXXXXXXXXand #KEDS-
XXXXXXXXXX.
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
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| 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
equirements3 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-
ect 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
esults, 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
ealized in service delivery.
As with many other researchers, a central focus of our work has
een to involve people with dementia centrally in the work of our
esearch 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 ba
iers 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 ba
i-
ers.5,26,27 The use of creative and innovative methods can be partic-
ularly useful for addressing ba
iers 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— cu
ently represented through advocacy
ut 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
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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
ut 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
y 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 care
supporter. Two of
those approached were not available and ten members agreed
to participate, five females and five males, from u
an 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-
ers 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 cu
ent and high priority policy area as the Department
of Health in Ireland is cu
ently 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-
ums (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