Inciting dialogue and disruption - developing participatory analysis of the experience of living with dementia and dementia care
Lead Research Organisation:
University of Edinburgh
Department Name: Sch of Health in Social Science
Abstract
The World Health Organisation (2012) argue that dementia is the greatest health challenge of our time. The day-to-day lives of those living with dementia is incredibly complex and current health and social care provision may not be best able to meet their needs (Alzheimer's Society 2012). Contemporary policies aim to empower people with choices and resources, quite different to earlier ideas in which risk was understood as something to be controlled and limited. This move from managing 'vulnerable people' (through an emphasis on safety and loss) to managing vulnerable situations is evident in the contemporary language used such as 'risk enablement', 'positive risk taking', 'reasonable risk', and positive risk in practice models such as personalisation.
Our recent completion of Healthbridge, the evaluation of innovative and empowering services recommended by the National Dementia Strategy for England (DH 2009) has generated a large volume of data from people living with dementia (Clarke et al 2013). In total, 239 interviews were completed (lasting 45-120 minutes) with 47 people with a diagnosis of dementia and 54 carers interviewed on up to three occasions. This is the largest data-set of interviews with people with dementia and carers that can be found.
We aim to interrogate this existing qualitative dataset in partnership with those living with dementia, using an approach that sets out to challenge assumptions of current practice to inform the development of empowering support for people living with dementia.
To achieve this aim, our objectives are to:
1. Interrogate through secondary data analysis a large qualitative data-set of interviews with people living with dementia using two theoretical frameworks that will inform our analytical process: risk and resilience, and the ethic of care.
2. Collaborate with people living with dementia in the co-production (interpretation) of knowledge and the co-production of digital stories which re-present experiences within the data set.
3. Working with partners to influence practice and services to ensure that the work impacts on the development of services and support through briefing papers, digital stories, a blog and a good practice guide.
The project will be a process of co-production between academic researchers and non-academic partners, acknowledging the varied yet equally valuable knowledge/ experience bases involved in the process. There will be two key aspects to the work - identification of theory from the existing dataset, and participation with people with experience of dementia. These link together, enabling people living with dementia to be part of the process of analyzing the data.
Partners in the work are the Mental Health Foundation and Alzheimer Scotland. We will work together to develop a relationship with four groups of people with dementia and their carers, who will then shape the emerging findings from the secondary analysis of the data-set. Together with people living with dementia, we will create digital stories which combine individual experiences and the analysed data. These will be central to two workshops with people who influence policy and practice in dementia care.
In order to have the greatest influence of the work, we will communicate throughout and after the duration of the project with a wide academic and non-academic audience through a website, blog commentary, briefing papers and a good practice guide. The collaboration between the Mental Health Foundation, Alzheimer Scotland and the University of Edinburgh creates a powerful combination of influence and access to the key policy and practice arenas to ensure longer term use of the findings across these sectors.
Our recent completion of Healthbridge, the evaluation of innovative and empowering services recommended by the National Dementia Strategy for England (DH 2009) has generated a large volume of data from people living with dementia (Clarke et al 2013). In total, 239 interviews were completed (lasting 45-120 minutes) with 47 people with a diagnosis of dementia and 54 carers interviewed on up to three occasions. This is the largest data-set of interviews with people with dementia and carers that can be found.
We aim to interrogate this existing qualitative dataset in partnership with those living with dementia, using an approach that sets out to challenge assumptions of current practice to inform the development of empowering support for people living with dementia.
To achieve this aim, our objectives are to:
1. Interrogate through secondary data analysis a large qualitative data-set of interviews with people living with dementia using two theoretical frameworks that will inform our analytical process: risk and resilience, and the ethic of care.
2. Collaborate with people living with dementia in the co-production (interpretation) of knowledge and the co-production of digital stories which re-present experiences within the data set.
3. Working with partners to influence practice and services to ensure that the work impacts on the development of services and support through briefing papers, digital stories, a blog and a good practice guide.
The project will be a process of co-production between academic researchers and non-academic partners, acknowledging the varied yet equally valuable knowledge/ experience bases involved in the process. There will be two key aspects to the work - identification of theory from the existing dataset, and participation with people with experience of dementia. These link together, enabling people living with dementia to be part of the process of analyzing the data.
Partners in the work are the Mental Health Foundation and Alzheimer Scotland. We will work together to develop a relationship with four groups of people with dementia and their carers, who will then shape the emerging findings from the secondary analysis of the data-set. Together with people living with dementia, we will create digital stories which combine individual experiences and the analysed data. These will be central to two workshops with people who influence policy and practice in dementia care.
In order to have the greatest influence of the work, we will communicate throughout and after the duration of the project with a wide academic and non-academic audience through a website, blog commentary, briefing papers and a good practice guide. The collaboration between the Mental Health Foundation, Alzheimer Scotland and the University of Edinburgh creates a powerful combination of influence and access to the key policy and practice arenas to ensure longer term use of the findings across these sectors.
Planned Impact
Central to ensuring impact is the powerful collaboration between the Mental Health Foundation, Alzheimer Scotland and Edinburgh University; this combination creates significant reach of influence and access to the key policy and practice arenas to ensure longer term use of the findings across these sectors.
There will be direct benefits for the partners involved, each of who are keen to use the lessons emerging from the project to inform future developments within their organisations and for the care they provide. The project specifically involves time dedicated to support the use of research within these partner organisations.
Beyond these direct partners, the project will also deliver significant benefits to the wider dementia health and social service sectors and to carers supporting people with dementia, by contributing to their understanding of how to improve life for people with dementia. It is expected that, across the dementia field, practitioners, service providers and policy-makers, will specifically benefit from the findings, accessed through the briefing papers, the practice guide, the website and the 'challenging assumptions' events, which will feed into practice and policy debates around improving services for people with dementia. The impact of this learning on the wider social service sector will be maximised through the involvement of the project partners, both of which can utilise their remit and involvement to further maximise the sharing and use of knowledge generated through this project across the UK. Impact will further be maximised through the project website, and the dissemination of findings through existing newsletters, social media channels, events and contacts. All publications will be made available via project and partner websites, and highlighted via a range of dissemination channels, including relevant communities of practice,
The methodological findings from the work will have direct benefit to academia and to wider understanding of the use and usefulness of secondary qualitative analysis as a mechanism for improvement and innovation. In particular, dementia researchers will gain through improvements in their understanding of the experience of living with dementia and the importance of peer support within a framework of resilience. Beyond subject specific benefit there will be wider implications gained from the 'Challenging methodologies' work and from sharing our methodological findings in a way that will allow others to challenge assumptions around participatory qualitative analysis. This impact will be achieved through the briefing paper on methods and through at least two journal articles translating the innovative methods for involving people with dementia in data analysis and the theoretical findings from the analysis. These will contribute to academic debate around secondary data analysis of large qualitative data sets and also to our academic knowledge and understanding of qualitative analysis involving people with dementia (particularly across applied disciplines: social work, housing, nursing etc).
There will be direct benefits for the partners involved, each of who are keen to use the lessons emerging from the project to inform future developments within their organisations and for the care they provide. The project specifically involves time dedicated to support the use of research within these partner organisations.
Beyond these direct partners, the project will also deliver significant benefits to the wider dementia health and social service sectors and to carers supporting people with dementia, by contributing to their understanding of how to improve life for people with dementia. It is expected that, across the dementia field, practitioners, service providers and policy-makers, will specifically benefit from the findings, accessed through the briefing papers, the practice guide, the website and the 'challenging assumptions' events, which will feed into practice and policy debates around improving services for people with dementia. The impact of this learning on the wider social service sector will be maximised through the involvement of the project partners, both of which can utilise their remit and involvement to further maximise the sharing and use of knowledge generated through this project across the UK. Impact will further be maximised through the project website, and the dissemination of findings through existing newsletters, social media channels, events and contacts. All publications will be made available via project and partner websites, and highlighted via a range of dissemination channels, including relevant communities of practice,
The methodological findings from the work will have direct benefit to academia and to wider understanding of the use and usefulness of secondary qualitative analysis as a mechanism for improvement and innovation. In particular, dementia researchers will gain through improvements in their understanding of the experience of living with dementia and the importance of peer support within a framework of resilience. Beyond subject specific benefit there will be wider implications gained from the 'Challenging methodologies' work and from sharing our methodological findings in a way that will allow others to challenge assumptions around participatory qualitative analysis. This impact will be achieved through the briefing paper on methods and through at least two journal articles translating the innovative methods for involving people with dementia in data analysis and the theoretical findings from the analysis. These will contribute to academic debate around secondary data analysis of large qualitative data sets and also to our academic knowledge and understanding of qualitative analysis involving people with dementia (particularly across applied disciplines: social work, housing, nursing etc).
Publications
Clarke CL
(2018)
A Seat Around the Table: Participatory Data Analysis With People Living With Dementia.
in Qualitative health research
Clarke CL
(2020)
Relational care and co-operative endeavour - Reshaping dementia care through participatory secondary data analysis.
in Dementia (London, England)
| Title | Edinburgh Fringe Festival 2017 |
| Description | The Ties That Bind was performed on 14 occasions, including at the Edinburgh Fringe Festival in 2017. |
| Type Of Art | Performance (Music, Dance, Drama, etc) |
| Year Produced | 2017 |
| Impact | 162 people attended these performances |
| URL | http://skimstone.org.uk/thetiesthatbind/ |
| Title | Michael's Map |
| Description | A film, Michael's Map, has been developed in partnership between the research team and Skimstone Arts. The film presents the findings of the research in a narrative film format. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2016 |
| Impact | To date, the film has been shown at an international conference and was well received, both as a way of communicating the results of the research and for its artistic quality. Several discussions have arisen from this. Several people have asked for access to the film to use themselves, including in Georgetown USA to include as a key resource in teaching healthcare practitioners. The film is openly available on multiple sites (Vimeo, YouTube, Media Hopper) to allow maximum search-ability. Michael's Map premiered at the Life with Dementia Conference Linköping University, Sweden in October 2016 and has to date been viewed 188 times on Vimeo, been linked to a resource for raising awareness of dementia by the Public Health Agency, Canada and is being used with students at Georgetown University, USA. It has already received very positive feedback including: I found the film very thought provoking and thought it would work very well as a way of stimulating conversation in communities re how we respond/are more aware of dementia in our day to day lives I thought it was a very fine piece of work - December 2016 |
| URL | https://vimeo.com/channels/1148563 |
| Title | The Ties That Bind |
| Description | This is a 40 minute physical theatre performance that communicates the themes generated in the research. |
| Type Of Art | Performance (Music, Dance, Drama, etc) |
| Year Produced | 2017 |
| Impact | The Ties that Bind premiered in Keswick Theatre on 1st March 2017 with very positive reviews including: Excellent in giving an insight into dementia Good show. Felt sympathy for the characters. Thought setting and music/visuals worked - Paul in his own environment rather than a nursing home. Favourite part was Paul's victory in finding his keys. On a post-performance audience survey 74% of the audience agreed or strongly agreed with the following statements: 1. Watching The Ties That Bind has made me feel more compassionate towards people living with dementia 2. Watching The Ties That Bind has increased my awareness and understanding of living with dementia 3. I found watching The Ties That Bind comforting and reassuring 4. Watching The Ties That Bind has given me a bit of courage to change some things about how I live with dementia, or how I will interact with people with dementia in the future 5. Having watched The Ties That Bind, I can see new ways of doing things |
| URL | http://skimstone.org.uk/whats-on-theatre/ |
| Description | 1. We developed new methods of participatory secondary data analysis, working alongside group of people living with dementia to analyse a large qualitative dataset derived from the national evaluation of the English National Dementia Strategy. The analysis was based on two theoretical perspectives: Douglas' Culture (or Group-Grid) Theory and Tronto's Ethic of Care. We used a 9-stage model of analysis that involved cycles of presenting, interpreting, representing and reinterpreting the data and findings between multiple stakeholders. In the spirit of reflexivity and an understanding of knowledge as a provocateur which can have multiple, contradictory viewpoints, the analysis process was designed to incite dialogue with a range of stakeholders and create a space for dialogue with those voices most often marginalized and silenced by the dominant presence and understandings of researchers. Conducting this innovative research required us to explore and develop an understanding of how to prepare the data, and how to work with people with dementia as partners (including attending to research ethics, determining how to present a large dataset to people with dementia in an accessible way, and questioning what data is). 2. We discovered that: • Dementia and the effect it has on adhering to presumed but unspoken social expectations can lead to a gradual process of withdrawal of friends and withdrawing of oneself which culminates in social exclusion • Peer support, which is underpinned by a different set of social expectations, can restore a sense of social inclusion and is beneficial for some people, but not everyone. • More attention to the collective nature of care which includes peer support, families, communities and professionals, with people with dementia recognised as playing an active role within this network, could better support social inclusion. • New social expectations based on co-operative listening, co-operative action, and co-operative caring could lead to solidarity with people with dementia and a society where people with dementia can be included in community, social and public life. |
| Exploitation Route | We have developed several outputs from the research that are designed to make the findings accessible to non-academic groups. These include a series of Briefing Papers and a digital film (titled Michael's Map). We held two 'policy and practice' workshops, one in London and the other in Edinburgh. We have secured further funding from the ESRC Impact Accelerator Account held at the University of Edinburgh (2016/17) - this will allow more extensive ways of taking the findings forward through development of a live performance version of the film (titled Ties That Bind) and assessment of impact of the film and play. In addition, we have presented the research at two conferences to date and will be focussing on developing academic papers. The findings will increase awareness of the social group dynamics experienced by people living with dementia and may influence future policy and service delivery and well as family interpersonal relationships. There has already been international interest in the research findings and the research outputs. |
| Sectors | Communities and Social Services/Policy,Creative Economy,Healthcare,Leisure Activities, including Sports, Recreation and Tourism,Government, Democracy and Justice |
| URL | http://talkingdementia.org |
| Description | The ESRC project, Inciting Dialogue and Disruption in Dementia (IDD), is a secondary data analysis of interviews with 47 people with dementia and 54 care partners, analyzed with the participation of people living with dementia. The original data was collected to understand experiences of accessing the support of a dementia advisor or attending a dementia peer support group as part of the evaluation of the English National Dementia Strategy (the Healthbridge project, funded by the Department of Health Policy Research Programme). The distinctive contribution of the IDD secondary data analysis is that it highlights and articulates the subtle and often hidden shifts that can happen in relationships that can lead to people with dementia experiencing social exclusion. Some key messages from the research include: • Care as a co-operative relational endeavour (rather than unidirectional, polarising care receiver and care provider) • The importance of attending to 'silent harms' and risk enablement for people with dementia. • The importance for people with dementia of re-narrating their lives as purposeful within their communities. The IDD research team worked in partnership with the Artistic Director of Skimstone Arts, a group who make theatre, music and art in collaboration with artists, researchers and people experiencing increased social vulnerability: http://skimstone.org.uk/. The key messages from the research were developed into a film, Michael's Map (2016), and (with support from ESRC Impact Accelerator Account funding) a play, The Ties That Bind (premiered in March 2017). Both Michael's Map and The Ties That Bind reflect the key messages of the research through telling the story, and making visible, the subtle ways in which the early stages of dementia insidiously begin to affect close relationships, contributing to gradual social exclusion, but also how a meaningful and hopeful life with dementia can be re-narrated within co-operative caring relationships. The Ties That Bind uses a combination of physical performance, sound and visuals to convey these themes. Arts-based approaches to sharing research findings are a pathway to achieving impact and are known to provide opportunities to reach a range of audiences and wider publics. In relation to dementia, arts-based approaches enable research findings to be shared in accessible and emotional ways which prompt thinking about the complexities of living with dementia, open up new ways of seeing, broadening understanding and highlighting issues of social injustice which continue to affect the lives of people with dementia. Michael's Map and The Ties That Bind provide accessible ways of sharing research findings from IDD with a wide range of audiences, many of whom would be unlikely to read an academic journal or attend an academic conference e.g. families who are caring for a relative with dementia, front-line health and social care staff, or volunteers with an interest in dementia such as Dementia Friends. Post-performance discussion enable audiences to engage further in thinking about the themes, contributing to an ongoing process of sense-making as audiences bring their own experiences to the interpretive process. Thus the film and play enable the research to have a much greater reach in terms of the extent and diversity of the communities, individuals and organisations who are impacted - the film is easier to distribute digitally and so is able to reach larger and more geographically dispersed audiences; the play, like most live performances, carries a greater emotional impact (and is likely to have the greater significance for participants) and opportunity for post-performance discussion and impact feedback. Michael's Map premiered at the 'Life with Dementia' Conference in Linköping University, Sweden in October 2016 (audience approx. 100) and has to date been viewed 236 times on Vimeo: https://vimeo.com/channels/1148563/188113371. One testimonial stated: "Particularly interesting to see this issue from early stage and younger characters - often perceived/reported as solely an 'elderly' issue so thank you for broadening the scope. Top Notch!" The film has now been screened in a range of UK and overseas venues, indicating how the film is enabling research findings to reach an international audience quickly and increasing the potential of the research findings to influence perceptions and education: (i) Used by the Department of Health Public Health Agency Canada as part of a dementia resource for Facebook Canada to raise awareness about dementia, specifically for Facebook users. "Michael's Map was suggested by our expert working group as an excellent resource as it illustrates what it's like to live with dementia as well as for people who are carers". (ii) Used with students at Georgetown University, USA, to facilitate discussion about dementia. (iii) Shown in Peking University (Beijing, China) in March 2017 to 90 1st year nursing undergraduate students, and to 20 staff in the Institute of Medical Humanities. A Chinese sub-titled version has been developed to increase accessability. (iv) Shared through a blog site for the Journal of Advanced Nursing, which has a very wide international reach: http://journalofadvancednursing.blogspot.co.uk/search?updated-max=2017-01-10T14:44:00Z&max-results=6?t=18&by-date=false (v) Distributed through the Facebook networks of the Mental Health Foundation and Alzheimer Scotland. The Ties That Bind premiered in The Theatre on the Lake, Keswick, with an audience of 22 people, on 1st March 2017. It was reported in the regional news: http://www.itv.com/news/border/2017-03-01/keswick-based-theatre-explores-memory-loss-through-new-play/ The performance recieved very positive reviews, showing how the key outcomes of the research have been communicated to, and interpreted by, the audience: "I felt you portrayed the early stages of dementia well, the losing confidence and avoiding of tricky situations. Once on the journey it is difficult to turn back, change route." "Good show. Felt sympathy for the characters. Thought setting and music/visuals worked - Paul in his own environment rather than a nursing home. Favourite part was Paul's victory in finding his keys." A lively post-performance discussion revealed more of the immediate significance of the impact of the play on the audience, such as seeing things from the perspective of the person with dementia, and an increased self-awareness of their own behaviour towards people with dementia, asking the question 'what would I do?'. To further assess the significance of the impact of The Ties that Bind on the audience, a post-performance questionnaire was given out. The results showed that 74% of the audience agreed or strongly agreed with the following statements: 1. Watching The Ties That Bind has made me feel more compassionate towards people living with dementia 2. Watching The Ties That Bind has increased my awareness and understanding of living with dementia 3. I found watching The Ties That Bind comforting and reassuring 4. Watching The Ties That Bind has given me a bit of courage to change some things about how I live with dementia, or how I will interact with people with dementia in the future 5. Having watched The Ties That Bind, I can see new ways of doing things ESRC Impact Accelerator Account (Impact Booster) funding has been secured to perform The Ties That Bind at the Edinburgh Fringe in 2017, and it will continue to tour mainstream theatres in England throughout 2017. |
| First Year Of Impact | 2016 |
| Sector | Communities and Social Services/Policy,Creative Economy,Education,Healthcare |
| Impact Types | Cultural,Societal,Policy & public services |
| Description | Beyond The Margins |
| Amount | £344,414 (GBP) |
| Funding ID | 432 |
| Organisation | Alzheimer's Society |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2018 |
| End | 03/2021 |
| Description | ESRC Impact Accelerator Account |
| Amount | £20,000 (GBP) |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 11/2016 |
| End | 06/2017 |
| Title | IDD participatory secondary data analysis |
| Description | The project developed new methods of participatory secondary data analysis. This involved the participation of 35 people living with dementia over a series of four workshops (in four groups, so a total of 16 workshops). the method developed too account of ways of authentically engaging people with dementia with a large data set, exploring levels of engagement and analysis, and analysing the data in a way that was informed by people living with dementia. This required the suspension any search for a singular truth which is owned by ourselves (as academic researchers), and to instead focus attention on: Reflexivity - the juxtaposition of self and subject matter. Multiple voicing - the rejection of single, integrating conclusions. Literary styling - the replacement of traditional realist discourse. Performance - expanding communities in dialogue and avoiding claims of truth. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2016 |
| Provided To Others? | Yes |
| Impact | To date, the methods has been presented orally at a conference, stimulating several discussions about how to work with people with dementia as co-researchers. |
| Title | IDD data analysis |
| Description | We developed a novel method of working with people living with dementia in co-analysing a large qualitative dataset. |
| Type Of Material | Data analysis technique |
| Year Produced | 2016 |
| Provided To Others? | Yes |
| Impact | To date, we have presented this model in two workshops and at an international conference. This stimulated several discussions about the practical and methodological ways on working with people with dementia. |
| Description | AS - IDD |
| Organisation | Alzheimer Scotland |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | engagement in research that adds value to the organisations activities. |
| Collaborator Contribution | Access to user network for recruitment. Use of venues and catering for research purposes. |
| Impact | Outputs to date include Briefing Papers, policy workshops and a film (Michael's Map). Multi-disciplinary - social policy, healthcare, geography It is a multi-disciplinary collaboration - healthcare, geography, social policy |
| Start Year | 2015 |
| Description | MHF - IDD |
| Organisation | Mental Health Foundation |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | engagement in a research project that is consistent with the aims of the Mental Health Foundation |
| Collaborator Contribution | Access to participants. Use of facilities, catering and local staff support. |
| Impact | Outputs to date include Briefing Papers, policy workshops and a film (Michael's Map). Multi-disciplinary - social policy, healthcare, geography |
| Start Year | 2015 |
| Description | Skimstone Arts - Michael's Map |
| Organisation | Skimstone Arts |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | The findings of the research were the foundation to the development of a new film by Skimstone Arts (titled Michael's Map). This is part of a larger partnership between the research project PI and Skimstone Arts, and this has enabled them to secure Arts Council for England funding previously (leading to performances and a film titled Jack and Jill). In addition, Skimstone Arts have recently secured further Arts Council for England funding and this will support the development of a live performance version of the film (titled Ties That Bind) and its touring. |
| Collaborator Contribution | Skimstone Arts have brought their creative and performance skills and experience to the partnership. This has enabled the development of a film (Michael's Map) as an output of the research which communicates the findings of the research in a way that can be accessed by a wide audience, including a lay audience. |
| Impact | The partnership has led to multiple performances of the play Jack and Jill and the Red Postbox; and a linked film titled Jack and Jill - available at https://media.ed.ac.uk/media/Jack+and+Jill/1_lys8yduu The partnership has also led to the development of a film titled Michael's Map, and a linked performance version titled Ties That Bind is in development. |
| Start Year | 2012 |
| Description | IDD CEDER Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | Around 35 people attended a conference presentation about the research. The conference concerned Citizenship and Dementia and was hosted by the Center for Dementia Research (CEDER), Linkoping University, Sweden. The presentation stimulated considerable debate about the methodological challenges of the research and the findings. Participants were largely other (international) academics and doctoral students. |
| Year(s) Of Engagement Activity | 2016 |
| Description | IDD Dementia Congress |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Around 40 people attended a presentation about the research at the 2016 Dementia Congress, held in Glasgow. The presentation stimulated discussion about the project and about experiences of living with dementia |
| Year(s) Of Engagement Activity | 2016 |
| Description | IDD Participant workshops |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | 35 people living with dementia (with a diagnosis or a care partner) engaged with the project as co-analysts in one of four group - each group meeting on four occasions (a total of 16 workshops). These workshops were critical to the participatory design of the research. They stimulated extensive discussion and have informed the findings of the research. Participants reported finding the discussions helpful themselves in shaping their understanding of living with dementia. |
| Year(s) Of Engagement Activity | 2015,2016 |
| Description | IDD Policy workshops |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | 30 people attended one of two workshops held towards the end of the project, one in London and one in Edinburgh. The participants were from backgrounds where there were informed by and informed policy development and policy implementation - including third sector employees, policy advisors, service managers, practitioners and academics from other Universities. The workshops presented the findings of the IDD project and stimulated extensive debate. |
| Year(s) Of Engagement Activity | 2016 |
| Description | IDD blog |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Third sector organisations |
| Results and Impact | The project developed a blog - visited to date by 124 people on 293 occasions. The purpose of the blog was to communicate the ongoing development of the project and some of the key methodological and practical challenges. |
| Year(s) Of Engagement Activity | 2015,2016 |
| URL | http://talkingdementia.org/category/blog/ |
| Description | IDDwebsite |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Third sector organisations |
| Results and Impact | 124 people visited the project website on 293 occasions. The purpose of the website is to make available the study objectives and methods, key resources informing the study and resulting from it, and a blog site. |
| Year(s) Of Engagement Activity | 2015,2016 |
| URL | http://talkingdementia.org/category/blog/ |
| Description | Premier performance of The Ties That Bind |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | 20 members of the public attended a performance of The Ties That Bind in a regional theatre. There was a discussion session after the performance and information about impact was collected. |
| Year(s) Of Engagement Activity | 2017 |
| URL | http://skimstone.org.uk/whats-on-theatre/ |