Empowerment into practice: a realist evaluation of a dementia empowerment service

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    Background: Involving people with dementia (PWD) in decision-making is broadly recognised as a way to empower them to lead more independent lives and have a more meaningful role in determining their care. However, there are a lack of rigorous evaluations of empowerment-driven services and policies, which are needed to develop a deeper understanding about how to optimise successful implementation. This paper presents findings from an evaluation of Dementia NI, an organisation founded and led by people with dementia.
    Method: We used a realist evaluation approach that involved interviews with 15 PWD, three staff and two board members, ethnographic observations, along with documentary analysis to identify ‘what works, for whom, under what circumstances’. Analysis followed realist logic to develop context-mechanism-outcome configurations (CMOcs).
    Results: The Dementia NI service model of empowerment involved the formation and maintenance of social groups of PWD. Facilitators, selected and recruited by PWD, supported six groups, comprising one to four members with mild to moderate cognitive impairment. Facilitators helped expand empowerment groups, facilitated decision-making, awareness raising and consultation opportunities alongside group members. Interview and observational data suggested that ‘Empowerment Groups’ helped members develop a shared social identity and a sense of collective strength, demonstrated by a strong activist mentality among group members to challenge the stigma surrounding dementia. Group members also reported improved quality of life. Observational data also suggested that widespread implementation of this empowerment model has the potential to reduce stigma, increase social inclusion and involvement of PWD as active co-producers of policy and service development, better services and support.
    Conclusion: This case study of Dementia NI highlights potential 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.
    Original languageEnglish
    Publication statusPublished - 31 Oct 2018
    EventAlzheimer Europe Conference, Barcelona, 2018, Making dementia a European priority - Barcelo Sants Hotel, Barcelona, Spain
    Duration: 29 Oct 201831 Oct 2018
    https://www.alzheimer-europe.org/Conferences/Barcelona-2018

    Conference

    ConferenceAlzheimer Europe Conference, Barcelona, 2018, Making dementia a European priority
    CountrySpain
    CityBarcelona
    Period29/10/201831/10/2018
    Internet address

    ID: 160387848