Co-producing a shared understanding and definition of empowerment with people with dementia
Research output: Contribution to journal › Article
Methods: We 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) reviewed the findings of this search and co-produced an agreed definition they felt best described empowerment for them.
Results: Phase 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 one is respected, has a voice and is listened to is involved in making decisions about their lives and has the opportunity to create change through access to appropriate resources”.
Conclusions: The 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 the added value of involving PWD in research in terms of unique insights afforded by their lived experiences.