A translational case study of empowerment into practice: A realist evaluation of a member-led dementia empowerment service

Abstract

Involving people with dementia in decision-making is widely accepted as a means of empowering them to lead more independent lives and have more meaningful roles in shaping their care. However, there is a need to conduct rigorous evaluations of empowerment-driven services and policies in order to develop a deeper understanding about how to optimise successful implementation. This paper presents the results of an evaluation of Dementia NI, an organisation initiated and led by people with dementia. We used a realist evaluation approach that comprised interviews with 15 people with dementia, three staff and two board members, ethnographic observations, along with documentary analysis to identify 'what works, for whom, under what circumstances'. Analysis used realist logic to build up contextmechanism-outcome configurations (CMOcs). The Dementia NI service model of empowerment revolved around the formation and maintenance of social groups of people with dementia. Facilitators, recruited and selected by people with dementia, supported six groups, consisting of one to four members with mild to moderate cognitive impairment. Facilitators helped expand empowerment groups, facilitate decision-making, awareness raising and consultation opportunities with group members. The 'Empowerment Groups' appeared to lead to the development of a shared social identity and a sense of collective strength as indicated by interview and observational data demonstrating an activist mentality among group members to challenge the stigma surrounding dementia. Group members also reported improved quality of life. Widespread implementation of the empowerment model has the potential to lead to reduced stigma and greater social inclusion, increased involvement of people with dementia as active co-producers of policy and service development, better services and support. This case study of Dementia NI illustrates that there are boundaries and challenges to empowerment in terms of requiring additional support from staff without dementia. However, despite these challenges, empowerment-driven organisations can and should be committed to involving members in lead roles and key decision-making.

The involvement of people with dementia in advocacy: a systematic narrative review

“…This was followed by two studies from the same two-year project investigating the experiences of people with dementia campaigning for change (Bartlett, 2012(Bartlett, , 2014) and one of advocates supporting higher education (Russell, 2016). A realist evaluation of an empowerment service (McConnell et al, 2018) and a series of interviews with individuals "speaking as and for" people with dementia (Hillman et al, 2018) followed. The final paper analysed the aims/purposes of POs representing people with dementia (Schicktanz et al, 2018) and for the purpose of this review should be treated with caution as only three people with dementia were included as part of a much larger sample.…”

“…Clare et al (2008) contacted participants by email, whereas Schicktanz et al (2018) used more than one interviewer, reflecting their international scope. All studies outlined researchers' affiliations, but three added credentials, occupation, experience and training (Clare et al, 2008;McConnell et al, 2018;Russell, 2016). In their reflexive IPA approach, Clare et al (2008) addressed their own pre-conceptions through discussion within the research team.…”

“…Six were exclusively qualitative and presented results in a narrative form, usually as themes. One realist evaluation incorporated quantitative elements, reporting data under the headings of Dementia Northern Ireland's intervention strategies (McConnell et al, 2018).…”

“…People with dementia have become involved in diverse advocacy, including fundraising, campaigning (Bartlett, 2014;McConnell et al, 2018), consultation (McConnell et al, 2018, awareness-raising (Schicktanz et al, 2018), lobbying (Bartlett, 2012), publicspeaking (Bartlett, 2014), and supporting learning (Russell, 2016). Advocates also communicate online, through blogs (Kannaley, Mehta, Yelton, & Friedman, 2018), Twitter (Talbot, O'Dwyer, Clare, Heaton, & Anderson, 2018) and Facebook (Craig & Strivens, 2016).…”

Active inclusion of people living with dementia in planning for dementia care and services in low- and middle-income countries

“…Establishing or strengthening advocacy organisations which are led by and for people with dementia could be key to facilitating involvement in community-level care planning (Lempp et al, 2018). These organisations help build capacity and support people living with dementia who are willing to work as advocates, and can help service planners and researchers to identify people living with dementia who are willing and able to contribute to service planning (McConnell et al, 2018). This is important because only a subset of people living with dementia may want to contribute to dementia services and planning, particularly in public fora and in the contexts where dementia is highly stigmatised.…”