{"paper_id":"36854514-7e00-4ca1-bab0-b298c2181c69","body_text":"Public narratives around dementia have often excluded the experiences of people with\ndementia themselves. Language around dementia has been largely medical, negative, or\nboth, with words such as ‘suffering’, ‘burden’ on carers and the concept of dementia\nas a ‘living death’ still commonly used by the media ( Peel, 2014 ). The condition has been seen\nat various points as a part of normal ageing, a solely biomedical issue or a\nrelational problem, necessitating a focus on families providing care ( Nedlund & Nordh, 2015 ;\n O’Connor & Nedlund,\n2016 ). The voices of people with dementia have, in the past, largely been\nabsent.\nThese negative narratives have been shifting in the last few decades. Tom  Kitwood’s (1997)  work\naround the idea of personhood has sought to shift away from an exclusively medical\nnarrative to one which sees the  person  as well as the\n illness . The importance of hearing the perspective of people\nwith dementia is now acknowledged in both research and practice ( Bartlett & O’Connor,\n2007 ), and activities such as life story work are frequently employed in\nsocial care and health settings ( Gridley et al., 2016 ). In recent years\nthere has been some acknowledgement of the decontextualised, apolitical nature of\nthe concept of personhood, and a shift to focussing on citizenship, which locates\nthe experiences of the person with dementia in their socio-political situation, and\ncomprises (1) active participation by people with dementia in their own lives and\nwider society; (2) recognition of the potential for growth and positivity within the\ndementia experience; (3) understanding of the link between individual experiences\nand circumstances and broader socio-political and cultural dynamics and structures\nand (4) fostering solidarity between people with dementia ( Bartlett & O’Connor, 2010 ).\nCitizenship can be enacted through everyday talk and practice (Barnes et al., 2004),\nbut for people with dementia, the ‘struggle for citizenship’ is ongoing ( Bartlett, 2014 ).\nCitizenship is inherently linked with narrative – the personal, inter-personal and\ninstitutional/structural are linked ‘through the stories we tell and are told about\nus, whether by individuals or collectivities (such as the Law, businesses and\ngovernment)’ (Baldwin, 2008, p. 224). The stories told about people with dementia\nare often medical, and medical narratives can overshadow all others, at least at\nfirst, and people can begin to interact with the diagnosis rather than the person\n(Sabat & Harre, 1992). Baldwin (2008) argues for the necessity of ‘narrative\ncitizenship’, recognising that the opportunities for people with dementia to tell\ntheir own stories have been limited, but that these opportunities must be\nfacilitated and nurtured if both personal and policy narratives are to change.\nPeople with dementia are increasingly involved in campaigning for social change\n( Bartlett, 2014 ), and\nthere has been a proliferation of groups led by people with dementia, such as the\nThree Nations Dementia Working Group, 1  Dementia Alliance\nInternational, 2  and many of the groups which are part of the Dementia Engagement\nand Empowerment Project [DEEP] network. 3  People with dementia have\ndeveloped guidance for involving people with dementia in conferences and events\n( DEEP, 2013a ),\nwriting dementia friendly information ( DEEP, 2013b ), and the use of language for\npeople writing about the condition ( DEEP, 2015 ). Such examples encompass many\nof the elements of citizenship outlined by  Bartlett and O’Connor (2010) .\nFor many people with dementia, campaigning work begins by giving their own personal\naccounts of living with dementia. People with dementia have used a variety of\nplatforms to tell their stories, including books (e.g. Mitchell, 2019, Swaffer, 2016\nand see also  Ryan et al,\n2009 , for an overview of the genre), discussion forums ( Rodriquez, 2013 ) and\nTwitter ( Talbot et al.,\n2020 ,  2021 ;\n Thomas, 2017 ). The\nDementia Diaries project was created specifically for people with dementia to tell\ntheir stories easily – diarists use a 3D printed device (or their own telephone) to\nrecord their words, which are transmitted to the Dementia Diaries team, transcribed\nby volunteers and uploaded to the Dementia Diaries website ( Woodall et al., 2016 ). Such innovations\nhave demonstrated the value of online platforms to construct communities ( Rodriquez, 2013 ), build\nself-esteem, support others and impact on policy and practice ( Woodall et al., 2016 ).\nThe concept of telling stories about health and illness is not new. We must tell\nmedical professionals, friends, employers and family what is wrong (or else make a\nchoice to hide our maladies), and our stories may change depending on the audience.\nThe stories that we tell are shaped by ‘all the rhetorical expectations that the\nstoryteller has been internalising ever since he [sic] first heard some relative\ndescribe an illness’ ( Frank,\n2013 : p3).\nHealth blogging – writing blogs about health conditions – is also relatively common.\nAcademic research has explored the blogging activities of women with breast cancer\n( Martino et al.,\n2019 ;  McNamara,\n2007 ), burns survivors ( Garbett et al., 2017 ), women with\nendometriosis ( Fernley,\n2021 ), people with depression ( Kotliar, 2016 ), as well as health blogging\nmore generally (see, for example,  Rains & Keating, 2011 ). Health\nblogging has been examined as a means of providing social support for people with\nhealth conditions ( Rains &\nKeating, 2011 ), and has been associated with modest improvements in\nwellbeing ( Rains & Keating,\n2015 ), and there is a suggestion that reading blogs written by someone\nwith personal experience of a health condition (in this case HIV) are more\npersuasive in changing action than blogs written by professionals ( Neubaum & Krämer,\n2015 ).\nIn people who care for people with dementia, blogging has been shown to reduce stress\n( Hori et al., 2010 )\nand foster community ( Anderson\net al., 2016 ). Carers’ blogs have explored the concept of dignity for\npeople with dementia ( Anderson\net al, 2021 ); needs, concerns and advice of caregivers ( McLennon et al., 2021 );\nand suicide and homicidal ideation in family carers of people with dementia ( Anderson et al., 2019 ).\nHowever, this work has all been from the perspective of the carer – the perspective\nof people with dementia themselves is absent.\nBlogging as a medium for people with dementia themselves to tell their own stories\nhas been largely neglected in academic research. One exception to this is a study by\n Kannaley et al.\n(2019) , which analysed five posts from blogs written by both people with\ndementia and carers and identified a series of themes, including seeing the\npositives, feeling out of control, advocacy and empowerment and coping mechanisms.\nHowever, their analysis did not separate blogs written by people with dementia from\nthose written by carers. In this paper we use a citizenship perspective to explore\nthe motivations of people with dementia to write their own blogs, and the practical\nchallenges of blogging for people with dementia.\n\nThe findings in this paper are taken from a small scale qualitative study exploring\nblogging by people with dementia, funded by Sheffield Hallam University and\nconducted in 2017 and 2018. The study was led by the researcher (Jenni Brooks), with\nNada Savitch (an independent dementia adviser) advising on and supporting the\ninvolvement of people with dementia.\n(1) Interviews with people with dementia in the UK who write their\nown blogs. (2) Analysis of blogs written by people with dementia (in English)\nacross the world.\n(1) Interviews with people with dementia in the UK who write their\nown blogs.\n(2) Analysis of blogs written by people with dementia (in English)\nacross the world.\nThis paper reports the first of these two stages. The aim for this stage was to\nexplore motivations and experiences of UK bloggers with dementia, and to examine\ntheir perceptions of the benefits, challenges and practicalities of\nblogging.\nRecruitment focused on bloggers with dementia, based in the UK, who wrote\nsole-authored blogs (not hosted by organisations or with multiple authors).\nExisting lists of bloggers with dementia provided a starting point, 4  followed by an\ninternet search for ‘blogger with dementia’, and ‘dementia blog’, and by\nsnowball sampling.\nBlogs were only selected for inclusion if they   • were written by people with dementia (based on their\nself-identification on the blog) living in the UK;   • were published by individuals rather than organisations;   • were publicly available and   • had posts within the previous year.\n• were written by people with dementia (based on their\nself-identification on the blog) living in the UK;\n• were published by individuals rather than organisations;\n• were publicly available and\n• had posts within the previous year.\nSaturation was reached after identifying eight blogs, with each new search only\nreturning the same results, and each blogger only pointing towards the same pool\nof others.\nWe contacted each blogger using the contact form or email address from their\nblog, or where these were not available, their public Twitter profile, inviting\nthem to take part. Information about the project was written in accordance with\nthe DEEP guidelines for good communication with people with dementia ( DEEP, 2013b ). Seven\nout of eight bloggers responded, one declined to take part, and six agreed. All\nparticipants were able to read and understand the information leaflet and give\nwritten informed consent to take part.\nTable 1  shows the\ncharacteristics of the participants. Table 1. Characteristics of participants. Name Length of time blogging before\ninterview Age at diagnosis Carol 6 weeks 58 George 2 years 11 months 63 Ken 11 years 56 Valerie 2 years 11 months Late 50s Wayne 1 year 2 months 59/60 Wendy 2 years 9 months 58\nCharacteristics of participants.\nAll six participants were white, British and had been diagnosed with dementia\nbetween the ages of 55 and 63. All had some degree of computer literacy, but\nnone had previous experience of blogging, although one (Valerie) was a\nprofessional author, and another (George) had an English degree and was used to\nwriting reports in his previous job.\nParticipants were supported to take part a way that suited them. Three\nparticipants chose to be interviewed at home, and the other three chose public\nlocations – two cafes, and one hotel lobby. Two participants had spouses\npresent, another spouse was in the house but not the same room, and three\nparticipants were interviewed alone.\nAll participants were sent a list of interview topics in advance – one requested\na detailed list of questions to prepare for, which was sent. The interview\nschedule included questions about reasons for starting blogging, reading other\npeople’s blogs, frequency and topics of blog posts, topics avoided in blog\nposts, perceptions of blog readers, positive and challenging aspects of\nblogging, support from other people, changes over time (including perceived\nfuture changes), and advice for other potential bloggers with dementia.\nThe day before each interview the researcher called to confirm. On arrival, we\ntalked through the project information again, and each interviewee gave written\ninformed consent. Interviews lasted 1–2 hours and were audio recorded and later\ntranscribed. Each participant was given a £20 gift voucher to say thank you.\nThematic analysis was carried out using the Framework approach ( Spencer et al., 2013 )\nto manage interview data. The Framework approach is a matrix-based method which\nallows qualitative data to be organised and synthesised consistently, supporting\nidentification of themes both within and across cases. It has advantages in\nallowing later stages of analysis to be directly connected to original interview\nquotes to test emerging findings in the context of the whole dataset. The\nresearcher (Jenni Brooks) transcribed all interviews, re-read for familiarity,\nand developed a coding framework including a priori themes from the topic guide\nand emerging themes, which was discussed with Nada Savitch. Jenni Brooks then\nextracted interview data into the framework and assigned index categories, then\ncreated a series of central charts summarising and synthesising the data, using\nparticipants’ own words wherever possible. Jenni Brooks then conducted an\niterative process of mapping and interpretation to make sense of the data, and\ndiscussed and clarified this with Nada Savitch.\nA short summary of findings, again prepared using the  DEEP (2013b)  guidelines for written\ncommunication with people with dementia, was sent to each participant following\nanalysis. Findings were also presented at the UK Dementia Congress in 2018 to an\naudience of practitioners, academics and people with dementia, including two of\nthe study participants.\nEthical approval for this project was granted by Sheffield Hallam University\nFaculty of Development and Society Ethics Committee on 26 th  May 2017\n(ref: 394-BRO).\nEach participant was asked whether they wanted to choose a pseudonym, but all\nasked to appear in the research under their own name. This is consistent with\n Bartlett’s (2014) \nresearch with people with dementia who campaign for social change.\nThe aim of the study was to explore the motivations and challenges experienced by\npeople with dementia when writing their own blogs. This section begins with a\nbrief outline of what makes blogging as a format valuable for people with\ndementia, followed by a discussion of how participants overcame some of the\npractical challenges of blogging. The main body of the findings section focuses\non motivations for blogging, and these are grouped under three broad themes: the\npersonal level (blog as journal, blog as a ‘room of one’s own’); community level\n(blog as solidarity, blog as comfort) and society level (blog as education, blog\nas campaign tool).\nThe format of blogging allowed bloggers to tell their stories in ways they may\nnot have otherwise been able to do, but there were still practical challenges\nwhich they had developed strategies to overcome.\nThe asynchronous nature of blogging was perceived as a particular benefit for\npeople with dementia, allowing bloggers to draft posts over the course of days,\nsometimes weeks, before publishing them online, and all took advantage of this,\noften writing drafts in a word processing programme. This allowed them to\ncollect their thoughts before writing. ‘I’m not so good at speaking off the cuff…. [Blogging] gives me time to\nreflect, to think out exactly how I want to say something’ (George).\n‘I’m not so good at speaking off the cuff…. [Blogging] gives me time to\nreflect, to think out exactly how I want to say something’ (George).\nIn this way, the bloggers could join in public conversations about, for example\ndementia policy or human rights, without having to respond quickly, which they\noften found difficult.\nAll of the bloggers had used other forms of written online communication (for\nexample social media and forums) since their diagnosis to communicate with other\npeople with dementia, but blogs were seen as a personal space, where they\nretained control, and could decide what to write about and how to present their\nthoughts, with no word limit. All had gone some way to personalise their blog\nspace by choosing templates, or using photographs.\nBlogging as a format allowed bloggers to tell their stories in ways they may not\nhave otherwise been able to do, but it did pose challenges, which the bloggers\nhad developed their own strategies to overcome. Several wrote drafts of posts\nover a number of days before copying them onto the blog. Some found the blogging\nsoftware interface difficult to navigate, and one had asked someone else to set\nup a shortcut on the desktop of their computer to take them directly to the ‘new\npost’ page. Carol created her own personal ‘helpdesk’ of instructions for\nregular tasks and useful phrases that she could easily find when she needed\nthem.\nWayne described how a friend acted as informal ‘editor’. ‘Sometimes I get angry! [laughing] And… I see everything very black and\nwhite, that’s the dementia… and Dave has to try and tone it down, so\nwe’re keeping the frustration there, but taking the explosive anger\nout!’ (Wayne).\n‘Sometimes I get angry! [laughing] And… I see everything very black and\nwhite, that’s the dementia… and Dave has to try and tone it down, so\nwe’re keeping the frustration there, but taking the explosive anger\nout!’ (Wayne).\nWayne was unique in this sense though – the other bloggers occasionally asked\nother people to read a particular post but did not have this editorial\nrelationship. People did have other strategies though, such as keeping a bank of\nwords and phrases on the computer, and keeping an ongoing list of posts for when\nthey did not have any idea what to write about.\nAll of the bloggers were candid in their acknowledgement that their ability to\nkeep writing their blog would likely change in the future and some were already\naltering their blogging habits and strategies. Some, finding typing difficult,\nhad tried voice recognition software, with mixed success. Others found\nthemselves getting frustrated with blogging software, and writing less as time\nwent on. Valerie felt she was coming to the end of her blog, found using\nWordpress ‘murder’, and felt ‘I really cannot now do something so long and\npurposeful’. Similarly, Wayne found his posts taking longer, and joked: ‘I’m\nspending so much time living life I haven’t got time to write about it any\nmore’. Most, though, were determined to continue blogging whilst they could.\nThe rest of this findings section deals with the reasons the bloggers gave for\nblogging.\nThere were two sub-themes at the personal level: the blog as a journal – a place\nfor people with dementia to capture their thoughts and memories; and the blog as\na virtual ‘room of one’s own’, a space for bloggers to exert autonomy and\ncontrol, and in which to find their own voice.\nSeveral of the bloggers already had some involvement with dementia-related\ngroups and started their blogs partly to keep a record of their activities.\nWendy, for example found that ‘exciting things were happening, and they were\ngetting lost’, and for her, looking back at her own written and photographic\naccounts of events and activities was ‘quite therapeutic… whether you’ve\nforgotten it or not doesn’t matter’. Carol’s experience was similar – one of\nthe reasons she was writing was ‘to build a memory book that I can look back on further down the\nline, reading about all the things I’ve done… I’m hoping it’s going\nto be like a morale booster, you know, oh I did all those things’\n(Carol).\n‘to build a memory book that I can look back on further down the\nline, reading about all the things I’ve done… I’m hoping it’s going\nto be like a morale booster, you know, oh I did all those things’\n(Carol).\nIn this sense the blogs were being used almost as contemporary life story\naccounts, documenting each activity as it was happening or shortly after.\nWendy in particular described how she often wrote blog posts about an event\nduring the event itself, and in fact wrote the outline of a post about being\ninterviewed for this study during the interview.\nFor others, blogs functioned more as personal ‘stream of consciousness’ style\njournals rather than an account of activities. For example for Valerie,\nwhose long career as a writer predated her blog by several decades, her blog was ‘like a diary really of my progress, just thoughts and feelings and\nthe odd poem. And there was no structure to it whatsoever, none, it\nwas just an outlet, there was nothing generous about it, it was a\nme, me, me thing, it was just for me’ (Valerie).\n‘like a diary really of my progress, just thoughts and feelings and\nthe odd poem. And there was no structure to it whatsoever, none, it\nwas just an outlet, there was nothing generous about it, it was a\nme, me, me thing, it was just for me’ (Valerie).\nDespite this, Valerie did intentionally publish her blog online, unlike Ken,\nwho was advised to keep a diary by a clinical psychologist as a way of\ndealing with his graphic nightmares, and did not realise his electronic\njournal was public for 18 months. After the initial shock, Ken read the\ncomments on his blog and decided to keep it public – this is discussed\nfurther in the ‘blogging as reassurance’ section below.\nWayne’s blog also began as a series of private notes, made about events he\nhad attended, in an attempt to keep the appearance of having a good memory.\nOther people recognised the value of these notes, and in time, Wayne began\nto turn them into a blog. These shifts from private (or at least intended to\nbe private) journals to public resources demonstrates the value other people\nplace on accounts written by people with dementia.\nThere was also a sense that these written accounts might be useful in\nsupporting person-centred care in the future. ‘Eventually you reach a point on your journey when you’re not capable\nof looking after yourself and somebody else is going to have to do\nit. Well for somebody to be able to look back on a blog that... is\nnot quite day by day, but event by event expression of who you\nreally were, that’s still inside... that’s brilliant’ (Wayne).\n‘Eventually you reach a point on your journey when you’re not capable\nof looking after yourself and somebody else is going to have to do\nit. Well for somebody to be able to look back on a blog that... is\nnot quite day by day, but event by event expression of who you\nreally were, that’s still inside... that’s brilliant’ (Wayne).\nIn this sense, blogging shares some characteristics with life story work.\nThe blogs were autonomous virtual spaces, where their authors made decisions\nabout tone, style and content. Aside from Ken, setting up a blog had been a\ndeliberate act for all the bloggers, and in some cases they had spent\nconsiderable time reading other people’s blogs, and defining the tone of\ntheir own.\nValerie’s experience differed in some ways to the other bloggers. She had\nbeen a writer for many years, and for her, the blog was just one outlet\namong many through which to continue her writing: ‘Little words still flow\nthrough me, little sentences…’. She felt sharing these snippets of thoughts\nand poetry would be more beneficial for her than sharing too much of ‘me and\nmy doom and gloom’, because ‘I think that would have a negative impact on me, because I try and\nwork out all the things I can do rather than the things that I\ncan’t’ (Valerie).\n‘I think that would have a negative impact on me, because I try and\nwork out all the things I can do rather than the things that I\ncan’t’ (Valerie).\nThe other bloggers did also share positive experiences and other elements of\nlife, but were more specifically focused on sharing about their experience\nof dementia.\nAll of the bloggers were very aware of issues around privacy, and the impact\nof their writing on other people, and had given considerable thought to what\nthey were willing to share. For example some, like George, did not write\nabout their own medical appointments, whereas others were quite candid about\ntheir health, but did not mention family members or personal\nrelationships.\nThe asynchronous nature of blogging gave people with dementia the ability to\njoin in ongoing conversations in a way that they may otherwise have been\nunable to, as dementia can make speaking in public, particularly in group\nsettings, more challenging. In this way, blogging made people feel 'normal’ again. ‘I can type quicker than I can think and speak the words. Because\nthat part of my brain hasn’t broken, typing just makes me feel\nnormal again. I can do it far better than talking to people’\n(Wendy).\n‘I can type quicker than I can think and speak the words. Because\nthat part of my brain hasn’t broken, typing just makes me feel\nnormal again. I can do it far better than talking to people’\n(Wendy).\nEach blogger set out practical strategies for facilitating their writing,\nsuch as drafting and editing over several days, or having a friend read a\npost before publishing.\nSeveral bloggers had started their blogs with an explicit aim of providing\nsupport to others, and all listed this as one of their motivations to continue\nwriting. This support took two forms: solidarity with other people with\ndementia, and reassurance for family and friends.\nBloggers talked about using their blogs to demonstrate to other people with\ndementia that life could continue after a diagnosis – ‘to show that you can\ncontinue to lead a normal, active, well, not a normal life, but an active\nlife’ (Carol).\nSome people mentioned how scared they themselves had been after their own\ndiagnosis. Meeting other people with dementia and reading their words had\nhelped them see they could continue to live a good life and they wanted to\npass this encouragement to other people with dementia, to let them know ‘that life doesn’t end with a diagnosis, that it opens up a different\nworld, and it’s just all about adapting and doing things\ndifferently, but there’s still lots out there to be done’\n(Wendy).\n‘that life doesn’t end with a diagnosis, that it opens up a different\nworld, and it’s just all about adapting and doing things\ndifferently, but there’s still lots out there to be done’\n(Wendy).\nThe bloggers treated their work in this area seriously, and considered\nthemselves part of a peer network providing support to other people with\ndementia. The online element of blogging was thought to be valuable in this\nrespect, as after diagnosis, ‘people very quickly don’t go out, they lose\ntheir confidence, and they sit and home and watch tv’ (George). Having\nonline access to the experiences of other people with dementia was therefore\na way of gaining a sense of community, without being compelled into a face\nto face social situation. ‘We live in our little individual bubbles, and it’d probably be the\nsame for any other disease as well, but it’s really important to\nknow that we’re not alone’ (George).\n‘We live in our little individual bubbles, and it’d probably be the\nsame for any other disease as well, but it’s really important to\nknow that we’re not alone’ (George).\nIt was this that had encouraged Carol to begin writing her own blog.\nThe bloggers also found that they were providing comfort and reassurance to\npeople whose relatives were living with dementia. For example Ken first\nrealised his blog was public when he clicked on a ‘comments’ box 1 day and found ‘about 200 comments from people, all over the world, saying thank you\nfor this, because you’ve explained so much the doctors won’t tell\nus’ (Ken).\n‘about 200 comments from people, all over the world, saying thank you\nfor this, because you’ve explained so much the doctors won’t tell\nus’ (Ken).\nKen was initially ‘terrified’ at this discovery, but decided to continue\nwriting, because ‘it’s humbling to think you’re helping somebody’ – a\nsentiment shared by other bloggers too. This help could take a form that\nothers without dementia were unable to give: ‘Often people who’ve had relatives with dementia who died, they’re\nsaying oh I now realise why they did something, because of something\nI said’ (Wendy).\n‘Often people who’ve had relatives with dementia who died, they’re\nsaying oh I now realise why they did something, because of something\nI said’ (Wendy).\nThe bloggers’ concept of helping people extended beyond other people with\ndementia and their families to encompass two other areas: education for\nhealthcare professionals and others working with people with dementia; and\ncampaigning for change in wider society.\nNone of the bloggers started with an explicit aim of educating healthcare\nprofessionals, although some found themselves doing just that. Several had\nbeen invited to give talks to medical students, and Ken described how his\nblog was being used as a ‘teaching tool’ at several universities, including\nhis most local one, where nursing students were encouraged to search for\nspecific topics on his blog, such as 'waking people up from graphic\nnightmares’.\nSeveral bloggers acknowledged their ability to communicate about dementia was\nnot something necessarily shared by others. For example ‘Many people may not be quite as far on the journey, but have had\ntheir communication centres attacked, and are less able to\ncommunicate… what I was therefore putting across in words were\nthings that quite often they don’t get chance for the person living\nwith dementia to tell them…. So it very quickly proved to be a\nuseful tool’ (Wayne).\n‘Many people may not be quite as far on the journey, but have had\ntheir communication centres attacked, and are less able to\ncommunicate… what I was therefore putting across in words were\nthings that quite often they don’t get chance for the person living\nwith dementia to tell them…. So it very quickly proved to be a\nuseful tool’ (Wayne).\nBloggers therefore saw writing about their experiences of dementia as a\nservice which could help healthcare professionals and others better\nunderstand dementia.\nSome of the bloggers had deliberately started their blog as a campaigning\ntool, mostly to complement other campaigning activities they were taking\npart in, for example as part of the Dementia Action Alliance. ‘I’m writing for an audience, I’m not writing just because I want to\nwrite, I could do that on a piece of paper… I’m writing as an\nactivist, I want people to read it and re-examine what they think\nand what they do’ (George).\n‘I’m writing for an audience, I’m not writing just because I want to\nwrite, I could do that on a piece of paper… I’m writing as an\nactivist, I want people to read it and re-examine what they think\nand what they do’ (George).\nEven those who had primarily started blogging as a journal for themselves\nlater came to recognise the importance of the platform for raising awareness\nabout the realities of living with dementia, including medical appointments\nand accessing services and support. In some cases, bloggers had been invited\nto speak at conferences or to the staff of organisations about their\nexperiences.\n\nThis paper argues that blogging by people with dementia expands the range of public\nstories that are told about the condition, and contributes to the enactment of\n‘narrative citizenship’ for people with dementia through addressing the personal,\ninter-personal and institutional/structural elements and the relationships between\nthem (Baldwin, 2008). Blogs as a format do offer something different to other online\nplatforms that is particularly valuable for people with dementia. Blogs are\nasynchronous, so thoughts can be formed and written over time, meaning people with\ndementia can avoid problems of ‘outpacing’ ( Kitwood, 1997 ). The bloggers in this study\nvalued being able to write a blog post over several days; add photographs either to\nenhance, or when they found words more difficult; change themes or colour schemes to\npersonalise their blogs and write as often and as much as they chose. There is no\nobligation to take part in a conversation as there may be with a discussion forum,\nand their writing appears together, rather than interspersed between the writing of\nothers, giving them an opportunity to create a coherent narrative. Being in control\nof the environment limits the potential for encountering hostile people, as is a\npossibility on social media ( Talbot et al., 2021 ).\nPeople with dementia used their blogs to facilitate communication with, and support\nfor, other people with dementia, echoing the use of other forms of online\ncommunication, such as Twitter ( Talbot et al., 2020 ;  Thomas, 2017 ), internet discussion forums\n( Rodriquez, 2013 )\nand the purpose-built Dementia Diaries platform ( Woodall et al., 2016 ).\nThe long form nature of blogging allows for an enhanced level of insight into the\nexperiences of living with dementia, and bloggers identified that this was of\nbenefit to themselves, to other people with dementia, family and friends, as well as\nhealth professionals and the general public. Bloggers chose what to write about,\nwhat news stories and policy decisions to respond to, and made specific and nuanced\ndecisions about their own privacy. There has been an increased recognition of the\nneed for people with dementia to be included in research ( Dupuis et al., 2012 ;  McKeown et al., 2010 ;  Murphy et al., 2015 ), and\nin the education of healthcare professionals ( Cashin et al., 2019 ), but blogging gives\nthem a way to set the agenda, to talk about what is important to them – not just\nrespond to the specific concerns of policy makers and professionals. Other research\nhas demonstrated that reading blogs written by someone with personal experience of a\nhealth condition is more persuasive in changing action than blogs written by\nprofessionals ( Neubaum &\nKrämer, 2015 ).\nMany of the bloggers in this study also considered themselves to be campaigners, and\nblogging, for them, shared some similarities with campaign work by people with\ndementia ( Bartlett,\n2014 ), in some senses being considered campaigning in itself. Unlike other\nforms of campaigning, for example speaking in public, blogging allowed the bloggers\ntime and space to articulate their points of view, the challenges faced in sharing\npersonal experiences in public, and the difficulties involved in overcoming these\nchallenges. These blogs, as longer form narratives accessible to be read by other\npeople, go some way to bridging this gap between experience and understanding,\nmaking this emotional, and sometimes physical, ‘backstage’ labour visible. This is\nthe ‘backstage’ work that participants in  Bartlett’s (2014)  study found often went\nunrecognised by audiences.\nThis presentation of the ‘backstage’ work involved in telling personal stories of\ndementia in public is important. In recent years, people with dementia have been\n‘increasingly finding both a voice and a narrative space’ (Baldwin, 2008, p. 225).\nHowever, this can come at a cost, as demonstrated by many of  Bartlett’s (2014)  participants having their\ndiagnoses questioned as they did not ‘behave in a way that one might “expect” a\nperson with dementia to behave, (p. 1300). The bloggers in this study are giving\nextensive, ongoing accounts of the realities of living with dementia, sharing both\npositive and negative experiences. By telling their stories slowly, in their own\ntime, and their own voice, they are increasing the variety of public narratives of\nwhat it means to live with dementia.\nBlogging as an activity is, of course, not available to everyone. Income, age,\nhousehold composition, mobility and memory are all contributors to digital exclusion\n( Age UK, 2018 ).\nInternet use is increasing in all age groups, but in 2018, over half of all adult\ninternet non-users were over the age of 75 ( Office for National Statistics, 2019 ).\nThere are moves towards more technological interventions for people with dementia,\nfor example the use of iPads in care homes ( Evans et al., 2017 ), but specific\ninterventions mediated by staff members are very different to independent blogging.\nThere is evidence that more older people began using the internet during the Covid\n19 pandemic ( Ageing Better,\n2020 ), but no evidence about internet use by people with dementia.\nThis study is small by nature. At the time of participant recruitment, only eight\nbloggers with dementia were identified in the UK, and six of those agreed to\ninterview. The bloggers included in this study all lived in England, spoke English,\nwere white, did not live in residential care, and had some support from family or\nfriends. They were all diagnosed with some form of young onset dementia between the\nages of 56 and 63. None of them had previous blogging experience, but they had all\nhad some degree of computer literacy.\nVoices are still missing from the blogging community in England, and therefore from\nthis research. The experience of dementia is very different for people with\ndifferent ethnic backgrounds ( Moriarty et al., 2011 ), who are not represented here, and according to\nsexuality ( McGovern,\n2014 ) and socio-economic status, which this study did not collect data\nabout. Older and more frail people with dementia are missing from the blogging\nspace, and therefore from this study, too. Similar omissions were found in research\nabout the use of Twitter by people with dementia ( Talbot et al., 2021 ).\nIt is unsurprising that relatively young, computer literate people might take to\nblogging about their experiences of dementia in greater numbers than people who are\nolder, have little experience of computer use throughout their life, or are more\nfrail and therefore perhaps unable to use such technology without support. People\nwith dementia who are involved in campaigning work more widely tend to be relatively\nyoung and healthy ( Bartlett,\n2014 ). The voices of people with dementia have been absent in the public\nnarrative for so long that any are a welcome addition and contribute to the public\nunderstanding of living with the condition. However, the relative demographic\nhomogeneity of bloggers with dementia, does mean that the variety of stories\navailable in this space is limited. There is a risk that those with different\nexperiences of living with dementia remain unheard.\n\nBlogging is a personal activity for a public audience. This study has identified that\nbloggers are motivated at the personal, community, and societal level to share their\nstories, but not everyone with dementia will want to share their thoughts online.\nWhen they do, there may be some value to technical support from other people. Some\nstudies have started to explore the specific needs of internet users with dementia,\nparticularly in relation to website design ( Freeman et al., 2005 ;  Schnelli et al., 2021 ),\nand if implemented by blogging software providers this may go some way to reducing\nthe technological challenges experienced by some of the participants in this study.\nIt is also possible that existing bloggers without dementia may develop the\ncondition in the future and continue their blogging activities, leading perhaps to a\nwider range of voices and subjects written about by people with dementia.\nWriting in general may be a useful way for people with dementia to ‘grow positively\nwith dementia’ ( Ryan et al.,\n2009 : p. 156), and blogging can be beneficial for the writer themselves,\nfor readers, and for education and raising awareness in the wider community. Writing\na blog does not require the commitment of writing a book, and provides some of the\nsocial and community benefits to the writer themselves of other forms of online\ncommunication, whilst shielding them from some of the more negative aspects\nassociated with some forms of social media ( Talbot et al., 2021 ). It is tempting to\nrecommend that blogging be attempted more widely by people with dementia, but one of\nthe key motivations for blogging is being able to share personal stories in a\npersonal way, so editorial control should remain with the blogger.\nBlogs blur the boundary between public and private space ( Snee, 2013 ) and there are potential\nethical issues in using them in a way not intended by the author. It may be useful\nfor professionals to read blogs written by people with dementia to gain an insight\ninto the everyday reality of living with the condition, and to hear experiences that\nmay not be heard in healthcare settings – but they should be mindful that there\nstill are voices and perspectives missing, and not assume that the stories are\nrepresentative. For the bloggers in this study, raising awareness among\nprofessionals was an important outcome of blogging. However, anyone using a personal\nblog in a professional context should be mindful of the author’s intentions, perhaps\nfollowing  Whiteman’s\n(2010)  suggestion to check the author shows an awareness of unknown\nreaders in their writing.\n\nThis study has explored the motivations and challenges faced by bloggers with\ndementia. We have found that blogging as a format offers benefits particularly\nwelcome to people with dementia, and that bloggers with dementia have found creative\nways to overcome technological challenges of blogging. Motivations for blogging\nexist at an individual level (blogging as a journal for personal thoughts, and as a\npersonal online space); at a community level (as solidarity for others living with\nthe condition, and comfort for family and friends), and the society level (as\neducation and a campaign tool). By working in these spheres, blogging can enable the\nenactment of some elements of active social citizenship for people with\ndementia.\nBloggers with dementia are challenging assumptions about what people with dementia\nare capable of, and are creating new stories of what it means to live with dementia\nwhich can enter the public consciousness.\nWe should be mindful of the implications for other people with dementia. Telling\none’s story publicly should never become compulsory, but there is potential for\nothers with dementia, for family and friends, and for healthcare professionals, to\nread and learn from the lived experience of bloggers with dementia to gain a better\nunderstanding of what it is like to live with the condition, and to ultimately shape\nbetter care.","source_license":"CC-BY-4.0","license_restricted":false}