Table 1.

Study characteristics describing the technology, stakeholder involvement, stage of the research process in which the involvement took place, role of the stakeholder, and methods used to involve patients and the public.

Study, year	Origin	Technology type and purpose	Stakeholders involved	NIHRa stage of research in which PPIb took place	Role of stakeholders involved	PPI methods
Davies et al [53], 2019	United Kingdom	Website to provide information and peer and professional support for caregivers of people with dementia toward end of life	Research development group including 6 HCPsc, 2 members of a dementia charity organization, and 1 carer	Design of the research, undertaking and management of the research, and analysis of data	Refining the aims of the wider project and steering the project throughout	Steering group, group meetings, and 1:1 meetings
Kort and van Hoof [54], 2014	The Netherlands	Website with information about home modifications for people with dementia and their family caregivers	3 dyads (people with dementia+carer) and, separately, a group of 20 (carers or residential home staff)	Did not fit model	Contributing to the iterative design process	Observations, consultation rounds, and questionnaire
Schikhof et al [55], 2010	The Netherlands	Monitoring system in residential home for people with dementia to detect anomalies (eg, panicking and falls)	8 nursing home staff members and 13 family representatives (as proxies for people with dementia)	Did not fit model	Contributing to the iterative design process	Interviews, workshops for prototype testing, informal group meetings, and focus groups
Muñoz et al [56], 2022	Canada	Virtual reality game to support engagement in exercise for people with dementia	7 people with dementia or MCId, 5 older adults without dementia, industry partners, and HCPs	Design of the research and undertaking and management of the research; elements did not fit model	Contributing to the iterative design process; HCPs and industry representatives also had a role in designing and managing the study	Prototype testing and interviews (people with dementia or MCI and older adults), research group meetings (HCPs), and focus group (older adults without dementia, members of the research team, and industry representatives)
Eisapour et al [57], 2020, also with reference to Eisapour et al [58], 2018, and Eisapour [59], 2018	Canada	Virtual reality game to support engagement in exercise for people with dementia	HCPs and 3 people with dementia	One PPI representative involved in the main research team, presumed to be throughout; other elements did not fit model	Contributing to the iterative design process and involved in the main research team	Focus groups, observations, informal discussions in care home, and prototype testing; one member of the original focus group subsequently joined the research team
Hanson et al [60], 2007	Sweden	Home computer-based education and support program providing information, support tools, and exercises for people with dementia and their carers	7 people with dementia	Did not fit model	Contributing to the iterative design process	Group meetings to develop support program content and computer skills tuition for group members
Orpwood et al [61], 2004	Finland and others part of the ENABLE project	Various assistive technology devices: picture gramophone, calendar, tap monitor, lost object locator, gas cooker monitor, and night-light	Family carers (as proxies for people with dementia), paid carers, and older adults without dementia	Did not fit model	Contributing to the iterative design process	Informal group meetings and focus groups
Kort et al [62], 2019	The Netherlands	Various projects described: a smart pill box and real-time location systems (also a website as documented separately [51])	People with dementia and carers (past or current)	Did not fit model	Contributing to the iterative design process	Varied between projects: observations, consultations, storytelling, focus groups, and “thinking aloud” sessions
Hendriks et al [63], 2017, also with reference to Hendriks et al [64], 2014	Belgium	System for monitoring the mealtimes of people with dementia in a care home using sensors and data input by carers into the app	Industry representatives, academics and HCPs, professional carers, people with dementia, and informal carers	Did not fit model	Contributing to the iterative design process	Meetings, feedback sessions with HCPs or professional carers, integration of research team into daily life at care home, and group “mapping” sessions with people with dementia and carers
Orpwood et al [65], 2007	United Kingdom	Various technology projects: music player, video streaming of outside world scenes into the homes of people with dementia, conversation prompter for people with dementia, and “sequence support” tool for prompting ADLse	Varied across projects: people with dementia; carers; and other “user representatives,” including academics from the social sciences, engineering, and dementia organizations	Did not fit model	Contributing to the iterative design process	Varied across projects: user survey, co-design workshops, observations, 1:1 user testing, and interviews
Savitch et al [66], 2012	United Kingdom	Website providing information about assistive technology for people with dementia	People with dementia and, separately, a steering group that also included 1 person with dementia	Steering group: detail not given; elements did not fit model	Contributing to the iterative design process (people with dementia); steering group also provided input throughout	Interviews, focus groups, co-design workshops, and involvement in steering group meetings
Perkins et al [52], 2022	United Kingdom, Ireland, Hong Kong, India, and Brazil	Web-based delivery of CSTf	4 people with dementia, 4 family carers, 4 service managers, and 8 CST group facilitators from the United Kingdom and Hong Kong; additional stakeholders in India	Design of the research and undertaking and management of the research	Designing and developing a protocol (people with dementia, carers, service managers, and CST facilitators) and field-testing of the protocol and subsequently giving feedback following testing (CST facilitators)	Focus groups (web-based); CST facilitators then tested the protocol with people with dementia in 5 countries; interviews with CST facilitators following field-testing
Hwang et al [67], 2015	Canada	Animated videos for prompting people with dementia with ADLs	6 family carers	Did not fit model	Contributing to the iterative design process	Co-design workshops first to develop the concept and then refine the designs; 2 home visits for paper prototype evaluation
Oksnebjerg et al [68], 2019	Denmark	An app to support self-management for people with dementia, including a calendar and diary	4 people with dementia, 4 family carers, and 4 paid carers	Did not fit model	Contributing to the iterative design process	Co-design workshops
Hung et al [50], 2021	Canada	PARO, a commercially available robot seal that uses AIg to support the social and emotional needs of the people with dementia interacting with it	5 “patient and family partners”	Undertaking and managing the research, analysis of data, and dissemination of research findings	Supporting data collection, thematic analysis of data, and authoring of the paper	Supporting data collection with some patients or particular settings, analysis (4 × 1-h thematic analysis group sessions), and coauthoring the paper
Rathnayake et al [37], 2021	Australia	A mobile health app that provides information about dementia, care strategies, and tips for managing ADLs	Carers, HCPs, and IT experts	Did not fit model	Contributing to the iterative design process	Web-based survey, interviews, and co-design workshops
Kowe et al [69], 2021, also with reference to Kowe et al [70], 2022	Germany	Sensor-based activity management system	6 family carers	Analysis of data	Supporting thematic analysis of interview data	30-min group analysis session or workshop
Daly Lynn et al [51], 2021, also with reference to Daly Lynn et al [71], 2019, and Daly Lynn et al [72], 2022	United Kingdom	Smart home system for people with dementia in supported living	Peer researchers: 7 older adults without dementia; steering group: including 2 people with dementia, 1 family carer, and 2 dementia organization employees	Undertaking and management of the research, analysis of data, and dissemination; steering group: detail not given	Peer researchers: conducting interviews with research participants and supporting data analysis; steering group: ensuring that the voice of older people was central to the project and coauthoring the paper	2-d training for peer researchers, conducting interviews jointly with a member of the research team, group thematic analysis session, and evaluation forms
Banbury et al [73], 2021	Australia	Virtual support program to provide information and peer support for carers of people with dementia	6 family carers	Did not fit model	Contributing to the iterative design process	Co-design workshops and group meetings (all virtual) following the Double Diamond approach
Fox et al [74], 2022	United Kingdom	A mobile health app that delivers memory tests throughout the day to monitor cognition changes	7 people with dementia, 7 family carers, and a PPI officer	Did not fit model	PPI officer as “proxy patient representative” in the research team; people with dementia and carers contributed to the iterative design process	Co-design workshops; PPI officer part of the main research group
Rai et al [75], 2020	United Kingdom	Virtual delivery of CST	People with dementia and family carers	Did not fit model	Contributing to the iterative design process	Consultation meetings and co-design workshops
Owens et al [76], 2020	Consortium spanning organizations in Europe and the United States	Remote monitoring and measurement technologies for people with dementia	People with dementia and family carers	Design of the research	Patient advisory board—supporting research planning and design and feedback on relevance and priorities	Provision of feedback on researchers’ literature review, group discussions, workshops, and other meetings of the patient advisory board
Stavropoulos et al [77], 2021	Greece, with involvement from multiple countries across Europe	A range of commercially available wearable devices	11 people with dementia and 10 carers from 11 countries across Europe	Design of the research	Reviewing devices and providing information to guide the design of future research, aiming to make it more relevant and accessible and improve participant experience	One-off 2.5-h session including presentations, roundtable discussions, hands-on experimentation, and voting
Liddle et al [17], 2022	Australia	No specific technology discussed—study explored factors related to engagement with technology for people with dementia and carers	15 people with dementia and carers (living experience expert reference group); 4 of them (2 people with dementia and 2 carers) were also members of the core research team and were listed as coauthors	Design of the research, undertaking and management of the research, analysis of data, and dissemination of research findings	Setting research priorities, supporting the design of interviews and developing the topic guide, thematic analysis of data, reflexivity sessions with the research team, and writing up of the study	Group sessions, discussions and meetings with reference group, group analysis sessions, and discussions of reflexivity
Hassan et al [78], 2017	United Kingdom	A range of commercially available wearable devices	>30 in total: people with dementia or MCI, carers, people with early-onset dementia (aged <65 y), and older adults without dementia	Design of the research	Contributing to research design (producing guidelines to optimize design and improve acceptability) and informing procurement decisions	Exploratory workshops in groups according to diagnosis (people with dementia+carers, people with early-onset dementia, and older adults without dementia), individual 1:1 meetings (people with MCI), and opportunities for stakeholders to try the devices at home
Jacklin et al [79], 2020	Canada	A wearable (wristband) for capturing movement-related behaviors (eg, falls, wandering, and agitation)	Indigenous community representatives, carers, community elders, and health and social care workers	Did not fit model	Informing the design of the research to ensure that culturally appropriate and inclusive methods are used	Community-based participatory research approach, focus groups (with carers), and preparation meetings with the Community Advisory Council to plan the research and ensure that appropriate methods are used
Ghafurian et al [80], 2022	Canada	App to support professional carers in communicating with people with dementia in nursing homes	17 professional carers and 1 nurse	Did not fit model	Contributing to the iterative design process	Survey, focus groups, and co-design workshops
Berge et al [81], 2022	Norway	Tablet-based music app primarily used as a relational tool to support positive interactions between people with dementia and carers	People with dementia or other psychiatric conditions, carers, and HCPs	Did not fit model	Contributing to the iterative design process	Observations, interviews, and 2 focus groups; user testing of a prototype with 4 older adults with dementia or other psychiatric conditions
Shadarevian et al [49], 2020	Canada	Tablet for sharing family videos in hospital with people with dementia to support care provision, reduce social isolation, and reduce aggression	People with dementia, family carers, HCPs, and students	Undertaking and management of the research, analysis of data, and dissemination of research findings	Positioned as part of the research team throughout, guiding the research process; thematic analysis of interview data; creating a toolkit to support wider dissemination and adoption of the intervention; and coauthoring the paper	Monthly research project meetings, making videos, interviews, group thematic analysis session, manuscript reviewing and editing
Tiersen et al [82], 2021	United Kingdom	Smart home system for people with dementia in their own homes	People with dementia, carers, and HCPs	Did not fit model	Contributing to the iterative design process	Various across 9 substudies: semistructured interviews, focus groups, co-design workshops, surveys, home visits, online group meetings, and observations
van der Roest et al [83], 2008	The Netherlands	Website with customized information for people with dementia and their carers about health care and welfare services	People with dementia, carers, and HCPs	Did not fit model	Contributing to the iterative design process	Workshop exploring user needs (people with dementia, carers, and HCPs), further co-design workshops (HCPs), prototype testing, and questionnaire (family carers)

^aNIHR: National Institute for Health and Care Research.

^bPPI: patient and public involvement.

^cHCP: health care professional.

^dMCI: mild cognitive impairment.

^eADL: activity of daily living.

^fCST: cognitive stimulation therapy.

^gAI: artificial intelligence.