Abstract
BackgroundEmpowerment for people with dementia (PWD) is not well defined within the research literature and we feel that this is an important area for development. It is important to seek, consult, and co-produce such a definition with PWD who are more actively involved in their communities post diagnosis (e.g. no longer the ‘long goodbye’). This study seeks to combine academic literature review methods with participatory/co-production methods in order to address this gap. We feel this approach also adds to developing methodologies in the field of co-production and user involvement.MethodsWe use a unique approach toward a definition of empowerment for PWD. Phase 1 - A scoping review of medical/health, social care and social policy-based databases to identify any previous literature that may have defined empowerment exclusively for PWD. Based on this literature, we collected a list of terms relating to empowerment for PWD. Phase 2 – Using empowerment key terms set on cards formulated from Phase 1 across three co-production workshops, academic team members, and nine members of Dementia NI (an organisation founded and led by people with dementia) we reviewed the findings of this search and co-produced an agreed definition they felt best described empowerment for them.ResultsPhase 1 and 2 led to a definition of empowerment relevant to PWD. This shared understanding of empowerment was defined by PWD as ‘A confidence building process whereby PWD are respected, have a voice and are heard, are involved in making decisions about their lives and have the opportunity to create change through access to appropriate resources’.ConclusionsThe strength of this research lies in addressing the current confusion and arbitrariness of empowerment within the context of dementia. This coproduced work also provides evidence for not only the possibility, but also the added value of involving PWD in research in terms of unique insights afforded by their lived experiences.
Highlights
Empowerment for people with dementia (PWD) is not well defined within the research literature and we feel that this is an important area for development
Plain english summary Empowerment is a useful term within health and social work to challenge stigma and enable greater freedoms to people with dementia (PWD)
This research article coproduces a definition of empowerment for PWD by PWD
Summary
Empowerment for people with dementia (PWD) is not well defined within the research literature and we feel that this is an important area for development. By utilizing the term “empowerment” among all of these organizations, it is claimed that stigma associated with dementia is challenged and PWD are empowered to influence decisions that affect them at community, service and policy levels [50]. This is important as previous studies have shown that that while individuals with dementia report wanting to participate in decisions about their care, the actual level of participation is limited, declining considerably as dementia progresses beyond the mild stages [43]. Constructing a definition of empowerment that is relevant to PWD is important to ensure that people within this population can set their own goals and facilitate objectives for empowerment
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