@article{discovery10141403,
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           month = {December},
            year = {2021},
           title = {Co-designing complex interventions with people living with dementia and their supporters},
         journal = {Dementia},
        keywords = {Co-design, dementia, interventions, public and patient involvement},
             url = {https://doi.org/10.1177\%2F14713012211042466},
          author = {Lord, K and Kelleher, D and Ogden, M and Mason, C and Rapaport, P and Burton, A and Leverton, M and Downs, M and Souris, H and Jackson, J and Lang, I and Manthorpe, J and Cooper, C},
        abstract = {BACKGROUND AND OBJECTIVES: We engaged people living with dementia, family carers and health and social care professionals in co-designing two dementia care interventions: for family carers and people living with dementia (New Interventions for Independence in Dementia Study (NIDUS)-family and home-care workers (NIDUS-professional training programme). RESEARCH DESIGN AND METHODS: Over October 2019-March 2020, we invited public and patient (PPI) and professional members of our NIDUS co-design groups to complete the PPI Engagement Evaluation Tool (designed to assess engagement activities), and non-professional PPI members to participate in qualitative telephone interviews. We thematically analysed and integrated mixed-methods findings. RESULTS: Most (15/20; 75\%) of the PPI members approached participated. We identified four themes: (1) Creating the right atmosphere: participants found group meetings positive and enabling, though one health professional was unsure how to position themselves within them; (2) Participants influencing the outcome: while most members felt that they had some influence, for one carer consultation seemed too late to influence; (3) Having the right information: several carers wanted greater clarity and more regular updates from researchers; (4) Unique challenges for people living with dementia: memory problems presented challenges in engaging with substantial information, and within a large group. DISCUSSION AND IMPLICATIONS: We reflect on the importance of providing accessible, regular updates, managing power imbalances between co-design group members with lived and professional experiences; and ensuring needs and voices of people living with dementia are prioritised. We encourage future studies to incorporate evaluations of co-design processes into study design.}
}