Discussion

The work described provides new and distinctive insights into the potential contributions a peer research approach brought to the research process and the challenges that arose from involving people with dementia as peer researchers. Identifying and evidencing the positive benefits of peer research activity may help shift societal safeguarding concerns around the potential physical and emotional harm for the person with dementia, towards more openly recognising that, with the right support, it is possible to constructively engage people with dementia in research processes. Such activity can provide benefits to the peer researcher, the research team, and to others through the new knowledge the research produces. Immersion in project processes also led us to consider the distinguishing charac-teristics of peer research activity and how these differ from other forms of patient and public involvement.

Realising agentic potential in the peer researcher role

Our preparatory work highlighted how peer research with people with dementia had rarely been undertaken, because of concerns for the physical and emotional safety of the individual alongside debate about whether people with cogni-tive impairment could add anything useful to research outputs. Working from such assumptions restricts a person’s right to be a social citizen, and prevents them from being agentic in taking on a social role and responsibility that might enhance their own life and the lives of others with similar lived experiences. In this project, we found that being a peer researcher and being listened to created personal satisfaction and generated a social role as being able to help others. The positive emotions the peer researchers experienced in safe, judgement-free spaces, resonate with Bartlett’s (2014) findings, which showed how people with dementia derive personal benefits from the enactment of such citizenship roles. Research is now needed to explore the different components of peer research to better understand which components generate the most positive outcomes: whether this is the intellectual engagement, the sharing of experiences with the aim of helping others, or both of these.

Distinguishing the person with dementia’s voice from others

Since we embarked on this project in 2016, several publications have reported on peer research with people living with dementia (Mockford et al. 2016; Clarke et al. 2018; Stephenson and Turner 2019). The extent to which the authors justify procedures and the descriptions of activity vary, but one point consistently noted is that family carers are accounted for as ‘living’ with dementia. However, lived experiences of dementia may differ markedly between the carer and the individual with the diagnosis. Our analysis workshops deliberately did not include family carers as their voices can overshadow the voices of people with dementia. More transparent reporting of peer research and co-production in

Peer research with people with dementia 71 dementia research will enable us to monitor how frequently, and where explicitly, the voice of the person with dementia is heard and prioritised.

Distinguishing between peer research and patient and public involvement

Throughout the study, we questioned how the peer research activity differed from more mainstream patient and public involvement. The expectation of public involvement is that such activity will help to ensure the research meets the needs of people, that information is accessible and the research is ethically sound (Health Research Authority 2016). An overarching intention for involving peer researchers in data analysis is to support the generation of new ways of understanding the data, to build new research knowledge. In this study, involving peer researchers in data analysis went beyond patient and public involvement, as they confirmed, challenged and produced new insights, which underpinned novel interpretations enabling knowledge-building.

Revaluing the practicalities of peer research approaches in dementia research

Our work with peer researchers with dementia highlights the need to be realistic, rather than dismissive, of the extent to which a medical condition affects a person’s abilities. Providing clear information on the expectations of peer researchers involved in these workshops enabled gatekeepers to see the potential of the activity. Subsequently, respecting the autonomy of peer researchers enabled them to assert their opinions during the analysis activities. We followed guidelines concerning the pragmatics of venue, transport, payment and accessibility (Di Lorito et al. 2016) and received advice from those living with dementia on how best to involve others in patient and public involvement activities (Gove et al. 2018). By making explicit our rationale on how we selected data to realise research aims, we have aimed to make the analytic processes more transparent. As the benefits of peer research become apparent, so researchers may have increasing confidence in sharing research processes for generating knowledge (Boaz et al. 2016). However, we acknowledge that while sharing power and control may be the ultimate aim in participatory methods, in this peer research, the management of data remained under the research team’s control.

 
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