Changing the narrative: the role of frontline worker attitudes and beliefs in shaping dementia-friendly services in England

Abstract

Applying the main principles of the Social Model of Disability as a guide, this paper argues that the attitudes and beliefs of staff and volunteers employed in frontline service delivery can play an important role in the achievement of dementia friendly communities, particularly through influencing the types of services offered. This position is supported through findings of an evaluation of an awareness raising intervention run by Age UK, aimed at organisations which provide services for people living with dementia in England. The paper contributes to an understanding of the cultural climate within frontline service delivery, which is often neglected in favour of discussions around meeting more immediate care and support needs. More specifically, it reflects on whether there is a need for an additional conceptualisation within the discourse around dementia friendly communities which ensures inclusion of the cultural environment.

Neighbourhood nursing : connection, place and meaning in the everyday experience of dementia

“…Other literature has offered diverse definitions of dementiafriendly communities, drawing on both the personhood (i.e. psycho-social) approach and the rights-based approach to dementia and arguing for an empowering social environment (Lin & Lewis, 2015;Odzakovic & Kullberg, 2016;Swaffer, 2014;Ward et al, 2018;Wiersma & Denton, 2016), awareness-raising interventions (Alden, Wigfield, Krispeter, & Karania, 2019;Baker et al, 2018;Cashin, Daley, Hebditch, Hughes, & Banerjee, 2019;Ebert, Kulibert, & McFadden, 2019;Innes, Page, & Cutler, 2015;Phillipson et al, 2018), promoting independence (Bartlett, 2016;Rahman & Swaffer, 2018) and human rights (Charras, Eynard, & Viatour, 2016;Rahman & Swaffer, 2018;Swaffer, 2015). Along with this knowledge, the existing literature argues that the implementation of dementiafriendly communities could support recognition of dementia as a public health matter in a widespread societal acknowledgement corresponding to the wishes and assets of people living with dementia (Alzheimer´s Disease International, 2016; Courtney-Pratt, Mathison, Doherty, 2018).…”

Media discourses on the socio-spatial rights of older people living with dementia and their carers

“…The purpose of this study is to address the lack of focus on the rights of people living with dementia as a basis for dementia-friendly communities (Alden et al, 2019; Buckner et al, 2019; Hebert & Scales, 2019). It adopts Lefebvre’s (1996) ‘right to the city’ concept as a rights-based conceptual framework, to inform the establishment of a rights-based dementia-friendly community in a regional Australian local government area (LGA).…”

“…It adopts Lefebvre’s (1996) ‘right to the city’ concept as a rights-based conceptual framework, to inform the establishment of a rights-based dementia-friendly community in a regional Australian local government area (LGA). A key challenge to achieving rights-based dementia-friendly environments relates to the problem of stigmatising and negative language which contributes to negative constructions of people living with dementia (Alden et al, 2019; Courtney-Pratt et al, 2018; Swaffer, 2014). The way in which society views people living with dementia is important for socio-spatial inclusion (Charras, 2020), and shifts in attitudes and beliefs are necessary to achieve genuine rights-based environments for people living with dementia (Alden et al, 2019).…”

“…Common negative and dehumanising metaphors found in dementia discourses can create revulsion and fear, and result in the delegitimisation, separation and marginalisation of people living with dementia (Behuniak, 2011). Attitudes and assumptions within negative dementia discourses contribute to negative stereotypes, which can also influence the participation and inclusion of people living with dementia in their communities (Alden et al, 2019). Furthermore, discourses grounded in tragedy which consider people living with dementia as deviant or different from other members of society, can lead to a lack of respect for their citizenship and human rights (McParland et al, 2017).…”

“…Media constructions of people living with dementia and carers are therefore important, as the oppressive geographies of towns and cities for people living with dementia are due not only to a neglect of accessibility needs, but also because of ableist values which are asserted in the spaces created by designers and planners (Blackman et al, 2003). While the dementia literature acknowledges that negative constructions contribute to the social exclusion of people living with dementia (Alden et al, 2019; Argyle et al, 2017; Behuniak, 2011; Birt et al, 2017; McParland et al, 2017) there has not been an explicit focus on constructions of people living with dementia and carers within a socio-spatial rights discourse. Furthermore while media discourses of dementia tend to be negative, within dementia-awareness and dementia-friendly literature, the rights of people living with dementia, and their community membership are recognised (Hebert & Scales, 2019).…”