How do we co-produce care planning with people living with dementia: A scoping review

Abstract

Background: Legislation, policy and clinical guidance champions the values of co-production in good care planning; however, it is unclear what kind of information is available in the literature about how concepts of co-production have been applied in practice to care planning from the perspective of people living with dementia and their carers as experts-by-experience. A scoping review was conducted to map the current evidence addressing care planning co-production practice from the perspectives of people living with dementia and their carers across various settings of dementia care.

Methods: A two-phase process was employed. Phase 1 comprised of a systematic search of the literature exploring co-production of care planning with people living with dementia from the perspective of experts-by-experience, followed by a data charting process to extract the relevant information from the included studies and present in a table format. Phase 2 utilised a process of category construction to synthesise the outcome of the data charting and present the key care planning co-production categories from the included publications into a table format with an accompanying narrative.

Results: We identified eight international papers, published between 2001 and 2023, addressing care planning co-production practice from the perspectives of people living with dementia and their carers across various settings of dementia care. The synthesis of results revealed seven key care planning co-production categories: 'preparedness', 'accessibility', 'active involvement of the person with dementia', 'active involvement of the carer', 'decision-making', 'outcomes and measurement', and 'care plan review'. Principles of co-production of care planning within dementia settings were established from the perspective of people living with dementia and their carers, as well as indicators of co-production of care planning having taken place.

Conclusions: Our scoping review has implications for change at all levels of healthcare provision. It highlights the lack of research in this area, but the learning that was uncovered pointed towards a largely absent voice of people with dementia and their carers in day-to-day care planning knowledge-exchanges and decision-making. This is despite this group's evident expertise on the subject of themselves and their loved ones from their own living experience. The scoping review was registered with the Open Science Framework (OSF) on 3 February 2023 (doi:10.17605/OSF.IO/KMR7G).

Keywords: Care plan; Care planning; Carer; Co-production; Dementia; Expert-by-experience; Healthcare; Review.