‘Our voice started off as a whisper and now it is a great big roar’: The Salford Dementia Associate Panel as a model of involvement in research activities

Abstract

This paper presents the work of the ‘Salford Dementia Associate Panel’, based at the Salford Institute for Dementia, Salford University (UK). We discuss the roles of the Dementia Associates, in particular around the areas of engagement and research. The panel is made up of people living with dementia, and current and former care partners. It highlights the development of this group over a four-year period and demonstrates over time how the role of a Dementia Associate member has evolved. The panel is involved in research, education and public engagement activities conducted by staff and students within the Institute. The motivations for becoming involved are clearly articulated and demonstrate how the personal backgrounds of individuals have driven the collective involvement and desire to bring about change. The benefits and challenges associated with working as part of a panel are discussed. We conclude by bringing together our experiences as a set of suggestions for others who may wish to create a similar forum to promote the involvement of people living with dementia and former and current care partners.

‘I want every minute to be worthwhile now’: The views and experiences of people living with dementia and their care partners about returning to in-person group meetings after COVID-19 lockdown restrictions

“…First, we establish that the involvement of participants in ongoing discussions about what a return to in-person meeting would/should look like throughout lockdown enables a joint process to be developed, which in turn allows all participants to feel valued, safe, and consulted about their re-engagement. This was of great significance to the participants given a co-creation approach corresponded to the ethos of the groups they had previously attended at the dementia institute ( Bowker et al, 2020 ). Although, it should be recognised that experiences of disempowerment in both experiencing the physical space itself and the modes of engagement available spoke to (1) a complexity in ensuring these values are promoted in the landscape of a pandemic and (2) the centrality of working to ensure autonomy is respected.…”

“…In this way, we emphasise that it is important to find the balance between ensuring individuals feel supported and safe, whilst also respecting that their perceptions of risk – and consequently to re-engagement – are varied and should be considered when reinstating groups. While shared decision-making and open on-going discussions about perceptions of safety and inclusion contributed to a successful transition to meeting in-person again for our participants, restrictions to their autonomy were felt to curtail their involvement in advocating for dementia awareness and rights ( Bowker et al, 2020 ; Innes et al, 2021 ). Such findings reflect the broader concern of lobbying groups in the UK and across the globe who fear that the COVID-19 pandemic – and the resultant loss of funding, priority, and sense of urgency in light of other health priorities – might be indicative of a ‘step back’.…”

A Novel Approach to Support the Use of Visual Methods when Researching with People Living with Dementia

“…In recent years there has been a noticeable and positive increase in awareness regarding the ways society engages with people living with dementia and increasing emphasis on their advocacy needs (Department of Health, 2015a;2015b; World Health Organization, 2021). Equally, there is a much-needed shift underway and hearing the ‘voice’ of people living with dementia is becoming common practice in research (Bartlett, 2012a; 2012b; Bowker, Calvert, Allcroft, et al, 2019) and policy and practice organisations (Pickett et al, 2018; Williamson, 2012). In the UK, supporting people to live well with dementia continues to be a priority currently driving national policy (Wittenberg et al, 2019).…”