Table 4 Study Characteristics: Dementia research

Identifying & prioritising

Alzheimer’s Society (2013) [17]

UK

To bring together a wide range of organisations representing the views of people affected by dementia, practitioners and clinicians to collectively agree on priorities addressing the care, treatment, diagnosis and prevention of dementia

Priority setting partnership

PwD, carers, and health and social care professionals

• Consultation - survey • Workshop - Nominal Group technique

Questions were prioritised by PwD, carers, and health and social care professionals to inform the future of dementia research

NR

NR

NR

NR

Identifying & prioritising

Deane et al. (2014) [18]

UK

To encourage people with direct and personal experience of Parkinson's disease to work together to identify and prioritise the top 10 evidential uncertainties that impact on everyday clinical practice for the management of Parkinson's disease

Priority setting partnership

PwP, carers and former carers, family members and friends, healthcare and social care professionals

• Consultation - survey and • Consensus meeting/ workshop• Steering group

Identified the paucity of evidence currently available to address the everyday practicalities of managing a complex disease such as PD. These results will help funders identify future priorities for research that have greatest relevance to patients and the clinicians that treat them.

NR

NR

NR

NR

Identifying & prioritising

Poland et al. (2014) [19]

UK

Carers and people with dementia to identify key issues for developing carer-relevant research projects

Patient and public involvement workshop

PwD and carers

• Workshop using adapted focus group methodology

Discussions highlighted the need to understand why health care professionals might not spend time listening to patients and carers so as to address their medication related difficulties and concerns

Directly involving carers in specifying topics that matter to them, can greatly enhance the relevance and feasibility of research to develop effective interventions

Involving health professionals into dialogue with carers in an extended workshop may have brought more perspectives to demonstrate the extent of difference in their experience, understanding and weighting of medications issues.

NR

NR

Identifying & prioritising

Hassan et al. (2017) [20]

UK

To involve members of the public in discussions about the acceptability and feasibility of different devices and research designs to inform the development of a device pool, software platform and written guidance to support future studies

Patient and public involvement

PwD and cognitive impairments, carers and people without memory problems

• Workshops• Drop-in sessions • Meetings

Findings were used to develop a pool of devices for researchers, with computer software and written guidance to help plan, design and support studies. Lessons learned was the need to build in help with set-up and on-going technical support as part of future connected health dementia research studies, as well as support with operating the device itself

It was feasible to involve patients and the public and use their insights to shape the development of a sensing platform for dementia research. Seeking feedback from a range of potential user groups meant that their requirements are accounted for

NR

NR

NR

Design

Paterson et al. (2005) [21]

UK

User participation in a pilot study to inform the design of any subsequent large-scale trial

User participation

PwP

• Semi-structured interviews

Service users assisted the team to create relevant outcome measures and helped with refining the design of the trial by advising on how best to explain the intervention to participants, helped the research team in defining the inclusion criteria and also highlighting an issues; relating to the time of the day when the interview is conducted with PwP’s, as people’s symptoms alternate during the day and are affected by their medication. The service users recommended that researchers assist participants to complete any questionnaires as people with Parkinson’s have may find it stressful to talk about their illness, and have problems with concentration and their eyesight

Study confirms the benefits of involving users in the research process and makes recommendations concerning the design of any future randomised trial

NR

NR

NR

Design

Yates et al. (2015) [22]

UK

Service users’ involvement in the development of individual Cognitive Stimulation Therapy for dementia

User involvement

PwD and carers

• Semi-structured interviews • Focus groups

Informed the development of the second draft of the manual, sample materials presented were well received by both carers and people with dementia, valuable insight into the feasibility of the programme, identified potential barriers at an early stage

Yielded valuable insight into the needs of service users for the iCST programme, and the importance of mental stimulation, both from the point of view of carers and people with dementia

NR

NR

NR

Design

Brooks et al. (2016) [23]

UK

Involved people with dementia as both advisers and participants in research about the use of life story work

Advisers

PwD

• Individual meetings

Advisers’ views on outcomes of life story work helped researchers with literature review, informed on ethical issues involved in doing focus groups with PwD, advised on information sheets and consent for PwD to ensure it’s clear and easy to understand, validated focus group findings from the first stage of the project. Informed on style of film for dissemination

Partnership between the research team and Innovations in Dementia to set up a network of advisers ensured that people with dementia were able to contribute in a real and valuable way to the research. However, the process of using consultees was lengthy and complex

NR

NR

NR

Design

Sheree et al. (2017) [24]

UK

Evaluate the design against stakeholder requirements: obtain feedback from PPI representatives and clinical experts on the usability of the adapted therapy

Patient and Public Involvement

Parkinson related dementia and caregivers

• PPI session

The final version of the therapy manual incorporated feedback from PPI session. PPI input agreed that the intervention was easy to engage in the session and to stimulate conversation using the topic materials, and that the discussion was stimulating and interesting. Also agreed that the session content and images were clear and easy to understand, that there was opportunity to personalize the session and that they would like to do a similar activity in the future.

NR

NR

NR

Design

Alan et al. (2016) [25]

UK

NR

Patient and public involvement group

PwD and Carers

• Interviews

Obtained feedback on the acceptability and feasibility of the toolkit, this was used to modify the toolkits prior to piloting

NR

NR

NR

NR

Undertaking / Managing

Burnell et al. (2012) [26]

UK

To develop a peer support intervention for family carers of people with dementia by involving service users in research

Involving service users

PwD and caregivers

• Modified Delphi process combined with a consensus conference• Anonymous reader consultation

Intervention was renamed, the role of the carer supporter defined, information booklet less formal and presentation style changed

Importance of involving service users in the development of complex interventions in making the intervention and consent documents as appropriate and feasible as possible to the target recipients

Peer support among small reference group, virtual lay group accommodates members with mobility issues, PPI group as members of the steering committee – good practise involving carers with direct experience, involving carers face-to-face and virtually is invaluable in shaping a programme for the end user

NR

NR

Undertaking / Managing

Littlechild et al. (2015) [27]

UK

Older people with dementia were involved as co-researchers and worked with academic researchers in all stages of the research process, exploring other older people’s experiences of transitions between care services

Co-researchers

PwD

• Participatory approach

Co-researchers worked in all stages of the research process, in planning and carrying out the interviews, although the academic researchers were conscious of the power they held in terms of resources and responsibility for the outcomes, they invested considerable time and effort into promoting equality in their relationships with the co researchers

It is possible to involve older people with dementia in a meaningful way in research processes and that both co-researchers and participants can benefit significantly from their participation

NR

• Semi-structured interviews • Focus groups

Co-researchers perspectives:Participation in the study was to ‘make a difference’, and had some advantages of ‘telling things as they are’. Personal benefits of involvement referred to gaining knowledge, enhancing skills, developing networks and new opportunities for involvement. The project helped them to own and affirm publicly their dementia identity in a way that they felt benefitted others, challenging negative expectations of both self and othersStatutory organisations’ perspectives:The feeding back of findings via the reading of narrative experiences was regarded as both powerful and refreshingVoluntary organisations’ perspectives:Co-research approach had led to fuller and richer data. Involving co-researchers with dementia was seen as challenging negative stereotypes Academic researchers’ perspectivesCo-researchers were sometimes sensitive to different issues, were more adept at ‘tuning in’ to participants’ communications. However, there was a tension between the data generated through the interactions of co-researchers and participants in the interviews and the data required to answer the research questions

Undertaking / Managing

Mockford et al. (2016) [28]

UK

Setting up the research study with lay members as part of the research team

Co-researchers

PwD and carers

• Discussions

Developing ideas which are important to people living with memory loss, high levels of interest from volunteer groups. Organisational challenges were met in the requirement for research passports and with payment methods for the co-researchers. Training was beneficial but incurred extra costs for repeated training days

Overall the benefits outweighed the challenges which were overcome to varying degrees. Buy-in to service user involvement in research studies could be improved by clarifying the requirements for NHS Trust approval and by simplifying the system for financial reimbursement to lay co-researchers.

NR

NR

NR

Undertaking / Managing

Swarbrick et al. (2016) [29]

UK

Development of the CO-researcher INvolvement and Engagement in Dementia (COINED) Model, which was co-produced alongside three independent groups of people living with dementia

Co-researchers

PwD

• Participatory Action Research• Discussions

Group members developed a more comprehensive compendium of themes of co-researcher involvement and engagement model. Each component of the model represents inclusivity, mutual respect and empowerment which are at the very core of the Neighbourhoods and Dementia Study

Developed the co-researcher involvement and engagement in dementia (COINED) Model, and identified ways in which people living with dementia wish to be involved as co-researchers in the research process.

NR

NR

NR

Undertaking / Managing

Giebel et al. (2017) [30]

UK

To develop a dementia toolkit, synthesising the evidence for home support and involving patient and public throughout the programme

Public involvement

PwD, caregivers and public members

• Small reference group • Virtual lay advisory group

Feedback on the proposal, protocol and research design of the suggested programme, agreed proposed research, amendments made to interventions, contributed towards devising a model using specialist software, contributed to the evidence synthesis components, revision to patient pathway – economic model, amendment to participant information sheet, case vignettes agreed on

Virtual lay advisory group allows access for anyone regardless of location and is less time consuming. Involving carers and patients both face to-face and virtually to shape both the design and methods of data collection has proven an invaluable source of knowledge to adapt studies of the programme better to the real-life experience of patient and public

NR

NR

NR

Undertaking / Managing

Schipper et al. (2014) [31]

Netherlands

Patients with Parkinson’s disease were engaged to list priorities for research to complement the professionals’ research agenda

Engaged

PwP and a spouse of a patient with PwP

• Interviews • Focus groups • Questionnaire • Voiceover group meetings

Developed a shared research agenda, prioritised the research topics, research process, commented on preliminary findings

NR

NR

NR

NR

Undertaking / Managing

Morgan et al. (2018) [32]

UK

To collect Research Network volunteers and researchers perspectives to understand and demonstrate the real impact of the Research Network

Research Network volunteers

PwD and carers

• Lay reviewer• Monitor• Grant Advisory Panel lay member• Grant Advisory Board lay member• Research Strategy Council lay member• Research Network Area Coordinator

A series of detailed case studies, demonstrating the range of mechanisms through which impact is achieved on volunteers, on researchers, on research and on Alzheimer’s Society

PPI was seen as less influential in biomedical research than in care research. However, case studies demonstrate Research Network can contribute to communication,accessibility and research impact in biomedical research.

NR

• Online survey• Semi-structured interview or group interview

1. Impact on volunteers - Network volunteers share motivation to make a contribution to dementia research and, ultimately, to improve life for people affected by dementia. For several volunteers, involvement in the Research Network have led to further opportunities for involvement in dementia research2. Impact on researchers - Insight from volunteers helps to validate current ideas and inform the future focus of researchers work, and to focus on the long-term impact of their body of work. Improved researchers written lay communication skills and understand more about how people understand and interpret their work. This has particular benefits for early career researchers:3. Impact on research - Changing methodology, supporting ethics approval applications, ensuring that the outcomes of research produce useful benefits for people affected by dementia has led to change in research focus.4. Impact on Alzheimer’s Society - Ensured consensus, accountability and allowed Research Network to reach a consensus that is representative of the diverse views

Undertaking / Managing

Iliffe et al. (2013) [33]

UK

Describes the extent of PPI in research within the Dementias and Neurodegenerative Diseases Research Network (DeNDRoN), in terms of PPI activity at the different stages of the research cycle and within the different levels of the research network. Includes three case studies in which centrally managed PPI was called on to assist three research studies conducted within the network.

Patient and public involvement

Patients, carers and public

• PPI panels

• DOMINO‐AD study - PPI advised to promote the study more effectively in primary care and to make GP referrals of patients into the study easier, by informing practices of the study and inviting them to engage with the research team and identify potential participants. This had a positive impact, recruitment rates increased within the 2 sites after PPI consultation on recruitment issues, in comparison with all other DeNDRoN recruitment patterns for the DOMINO‐AD study.• MUSTARDD‐PD - PPI reviewers recommendation was that the word ‘dementia’ should be used less and be replaced by terminology which pertained to the range of potential symptoms and signs; the study team found many suggestions as valid and constructive and that they would be making changes to their documents as a result of the consultation process with the PPI reviewers.• RESULT - Members of the PPI reference panel contributed to designing a systematic review of literature and available data, reviews of GP records and hospital databases, and economic modelling of disease progression and cost at different stages. PPI representatives had a significant role in the final stage of the study. A questionnaire was developed with help of the patients and carers on the reference panel, and approved by an ethics committee, which allowed lay people to review the intended outcomes of studies, dissemination plans and implementation strategies.

More specific written guidance is needed to optimize the contribution of PPI in clinical research at all stages from design to implementation. Guidance should contain clear information about the level of support that is on offer for study teams, practical advice about PPI methods, and details of the resources available and advice on what resources will be needed

The three case studies exemplify how centrally managed PPI can contribute positively to clinical research, in different ways. The benefits of PPI in these studies were perceived positively by both research network staff and researchers, as they solved problems identified by the research teams themselves.

NR

NR

Analysing & interpreting

Bunn et al. (2015) [34]

UK

To test and contextualize the findings of a systematic review of qualitative studies looking at patient and carer experiences of diagnosis and treatment of dementia

Involving service users

Patient, public and professionals

• Focus groups • Semi-structured interviews

Findings from the focus groups and interviews were consistent with those from the systematic review

The involvement of service users and practitioners allowed a more nuanced understanding of the systematic review data

NR

NR

NR

Analysing & interpreting

Martin et al. (2015) [35]

UK

To give members of the public the opportunity to offer their perspectives and to comment on the findings of a systematic literature review looking at attitudes and preferences towards screening for dementia

Patient and public involvement Event

Public members and carers

• Patient and public involvement Event

23 key themes emerged. PPI exercise suggest the acceptability of screening is dependent upon a variety of factors including personal beliefs, experiences and attitudes to health

Inclusion of lay participants in the analysis and the writing of the article was helpful because it allowed for the research team to confirm their interpretation of the discussion

NR

NR

NR

Analysing & interpreting

Stevenson et al. (2017) [36]

UK

Involving individuals with dementia as co-researchers in a qualitative analysis

Co-researchers

PwD

• Sessions involved in deriving meaning from the data, identifying and connecting themes

The analysis generated additional sub-topics for exploration in subsequent interviews. The session also led to development of ideas for dissemination of findings.

Involving users with dementia in analysis impacted on the overall quality of the study by allowing for inclusion of multiple perspectives in interpretation of findings and generating new insights to be explored in further interviews

NR

• Open-ended questions in a paper format

Usefulness of the role-play exercises as an opportunity to ‘actually think about a situation that happened to someone else’. Benefitted from taking part in an activity that required them to reason, use their cognitive abilities, meet with others of similar ability and hear the opinions of other people with dementia.