eprintid: 10141403 rev_number: 12 eprint_status: archive userid: 608 dir: disk0/10/14/14/03 datestamp: 2022-01-07 15:55:52 lastmod: 2022-01-07 15:55:52 status_changed: 2022-01-07 15:55:52 type: article metadata_visibility: show creators_name: Lord, K creators_name: Kelleher, D creators_name: Ogden, M creators_name: Mason, C creators_name: Rapaport, P creators_name: Burton, A creators_name: Leverton, M creators_name: Downs, M creators_name: Souris, H creators_name: Jackson, J creators_name: Lang, I creators_name: Manthorpe, J creators_name: Cooper, C title: Co-designing complex interventions with people living with dementia and their supporters ispublished: inpress divisions: UCL divisions: B02 divisions: C07 divisions: D79 divisions: D12 divisions: J96 keywords: Co-design, dementia, interventions, public and patient involvement note: This work is licensed under a Creative Commons Attribution 4.0 International License. The images or other third-party material in this article are included in the Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/ 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. date: 2021-12-30 date_type: published official_url: https://doi.org/10.1177%2F14713012211042466 oa_status: green full_text_type: pub language: eng primo: open primo_central: open_green verified: verified_manual elements_id: 1912890 doi: 10.1177/14713012211042466 lyricists_name: Burton, Alexandra lyricists_name: Cooper, Claudia lyricists_name: Rapaport, Penny lyricists_id: ABURT01 lyricists_id: CCOOP74 lyricists_id: PRAPA28 actors_name: Flynn, Bernadette actors_id: BFFLY94 actors_role: owner full_text_status: public publication: Dementia event_location: England citation: Lord, K; Kelleher, D; Ogden, M; Mason, C; Rapaport, P; Burton, A; Leverton, M; ... Cooper, C; + view all <#> Lord, K; Kelleher, D; Ogden, M; Mason, C; Rapaport, P; Burton, A; Leverton, M; Downs, M; Souris, H; Jackson, J; Lang, I; Manthorpe, J; Cooper, C; - view fewer <#> (2021) Co-designing complex interventions with people living with dementia and their supporters. Dementia 10.1177/14713012211042466 <https://doi.org/10.1177/14713012211042466>. (In press). Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/10141403/1/14713012211042466.pdf