{"title":"3136改善患者和公众对痴呆症研究的参与:为产生影响创造条件","authors":"N Morley, K Liabo, V Goodwin","doi":"10.1093/ageing/afaf133.080","DOIUrl":null,"url":null,"abstract":"Introduction Dementia is a major challenge to healthy ageing, and research into dementia is essential. Including people with lived experience of dementia in research leads to higher-quality, more impactful outcomes. But successful engagement can be complex and routine involvement practices may not always be inclusive for people with living with dementia. This project aimed to highlight what is needed to improve public involvement in dementia research and support researchers in engaging those with lived experience. Method We collaborated with experts by experience (people living with Dementia) and dementia researchers to explore current PPI activities within NIHR-funded dementia research. Mixed method data collection included an online questionnaire and structured conversations, supplemented with web searches. Data was organised in MAXQDA and visually mapped in MindGenius, identifying patterns and gaps. Results A diverse group of 38 participants, including researchers, healthcare professionals, funding panellists, and experts by experience, contributed. They emphasised that dementia affects individuals uniquely and involvement should be tailored to individual’s abilities and preferences. They encouraged avoiding assumptions and a focus on positive change, particularly for underserved communities. Creative approaches were highlighted as effective for prompting discussions and enabling non-verbal individuals to express their experiences. Openness to learning from lived experiences and adaptability were key in shifting from task-oriented to relational approaches and deepen understanding. However, participants also identified that rigid funding processes, limited resources, and a lack of understanding of involvement can undermine these practices. They emphasised the need for funder guidelines, ethical working frameworks, and supportive spaces for shared learning. Conclusion Promoting good practice in Patient and Public Involvement for people with dementia is critical to enhancing both research and impact. This work seeks to highlight examples of relational approaches that foster co-learning and meaningful engagement, and addresses structural barriers, providing supportive frameworks to achieve impactful and inclusive dementia research.","PeriodicalId":7682,"journal":{"name":"Age and ageing","volume":"1 1","pages":""},"PeriodicalIF":6.0000,"publicationDate":"2025-07-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"3136 Improving patient and public involvement (PPI) in dementia research: building conditions for impact\",\"authors\":\"N Morley, K Liabo, V Goodwin\",\"doi\":\"10.1093/ageing/afaf133.080\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"Introduction Dementia is a major challenge to healthy ageing, and research into dementia is essential. Including people with lived experience of dementia in research leads to higher-quality, more impactful outcomes. But successful engagement can be complex and routine involvement practices may not always be inclusive for people with living with dementia. This project aimed to highlight what is needed to improve public involvement in dementia research and support researchers in engaging those with lived experience. Method We collaborated with experts by experience (people living with Dementia) and dementia researchers to explore current PPI activities within NIHR-funded dementia research. Mixed method data collection included an online questionnaire and structured conversations, supplemented with web searches. Data was organised in MAXQDA and visually mapped in MindGenius, identifying patterns and gaps. Results A diverse group of 38 participants, including researchers, healthcare professionals, funding panellists, and experts by experience, contributed. They emphasised that dementia affects individuals uniquely and involvement should be tailored to individual’s abilities and preferences. They encouraged avoiding assumptions and a focus on positive change, particularly for underserved communities. Creative approaches were highlighted as effective for prompting discussions and enabling non-verbal individuals to express their experiences. Openness to learning from lived experiences and adaptability were key in shifting from task-oriented to relational approaches and deepen understanding. However, participants also identified that rigid funding processes, limited resources, and a lack of understanding of involvement can undermine these practices. They emphasised the need for funder guidelines, ethical working frameworks, and supportive spaces for shared learning. Conclusion Promoting good practice in Patient and Public Involvement for people with dementia is critical to enhancing both research and impact. This work seeks to highlight examples of relational approaches that foster co-learning and meaningful engagement, and addresses structural barriers, providing supportive frameworks to achieve impactful and inclusive dementia research.\",\"PeriodicalId\":7682,\"journal\":{\"name\":\"Age and ageing\",\"volume\":\"1 1\",\"pages\":\"\"},\"PeriodicalIF\":6.0000,\"publicationDate\":\"2025-07-04\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Age and ageing\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1093/ageing/afaf133.080\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"GERIATRICS & GERONTOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Age and ageing","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1093/ageing/afaf133.080","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"GERIATRICS & GERONTOLOGY","Score":null,"Total":0}
3136 Improving patient and public involvement (PPI) in dementia research: building conditions for impact
Introduction Dementia is a major challenge to healthy ageing, and research into dementia is essential. Including people with lived experience of dementia in research leads to higher-quality, more impactful outcomes. But successful engagement can be complex and routine involvement practices may not always be inclusive for people with living with dementia. This project aimed to highlight what is needed to improve public involvement in dementia research and support researchers in engaging those with lived experience. Method We collaborated with experts by experience (people living with Dementia) and dementia researchers to explore current PPI activities within NIHR-funded dementia research. Mixed method data collection included an online questionnaire and structured conversations, supplemented with web searches. Data was organised in MAXQDA and visually mapped in MindGenius, identifying patterns and gaps. Results A diverse group of 38 participants, including researchers, healthcare professionals, funding panellists, and experts by experience, contributed. They emphasised that dementia affects individuals uniquely and involvement should be tailored to individual’s abilities and preferences. They encouraged avoiding assumptions and a focus on positive change, particularly for underserved communities. Creative approaches were highlighted as effective for prompting discussions and enabling non-verbal individuals to express their experiences. Openness to learning from lived experiences and adaptability were key in shifting from task-oriented to relational approaches and deepen understanding. However, participants also identified that rigid funding processes, limited resources, and a lack of understanding of involvement can undermine these practices. They emphasised the need for funder guidelines, ethical working frameworks, and supportive spaces for shared learning. Conclusion Promoting good practice in Patient and Public Involvement for people with dementia is critical to enhancing both research and impact. This work seeks to highlight examples of relational approaches that foster co-learning and meaningful engagement, and addresses structural barriers, providing supportive frameworks to achieve impactful and inclusive dementia research.
期刊介绍:
Age and Ageing is an international journal publishing refereed original articles and commissioned reviews on geriatric medicine and gerontology. Its range includes research on ageing and clinical, epidemiological, and psychological aspects of later life.