Dr Jenni Brooks Senior Lecturer in Sociology, Sheffield Hallam University Nada Savitch Independent Dementia Consultant

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1 Dr Jenni Brooks Senior Lecturer in Sociology, Sheffield Hallam University Nada Savitch Independent Dementia Consultant UK Dementia Congress 2018

2 Introduction to the study Who is blogging? What do people write about? Why do people blog? Who reads the

3 Phase 1 UK Interviews with 6 bloggers Phase 2 Worldwide Analysis of 14 blogs (so far!)

4 29 blogs found 3 no contact details 3 not publicly available 1 no posts for 3 years

5 29 blogs found 3 no contact details 3 not publicly available 1 no posts for 3 years 22 invited 14 said yes

6 Perceived privacy? Is the text just text? Anonymise or give credit? Ask permission?

7 'In essence, the researcher knows all about the person producing the information found online, but this person knows nothing about the researcher' (Snee, 2013, p57) 'So perhaps, framed sharply, participants might understand my data collection as a kind of "eavesdropping" - listening in on a conversation that I was not part of, and not meant to be part of" (Lomborg, 2012, p25) I gained informed consent for interviews, and asked permission to use blog archives - and won't use them if I don't get permission.

8 Where? Age? UK, US, Australia Writing in English Diagnosed before 60 Gender Working when diagnosed Not blogged before 7 men, 7 women Since stopped work Had to learn how to blog

9 Everyone wrote about diagnosis everyday experiences news stories about dementia

10 Bloggers made different decisions about medical appointments family and friends other areas of life

11 Diagnosis & support Everyday experiences Daily routines & coping strategies Symptoms Medical appointments Interactions Therapy sessions Courses Advocacy work, including giving talks Tips for other people living with dementia Family outings and holidays Involvement in research

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14 I wanted an electronic journal, like a diary, because even then I was forgetting things, and exciting things were happening, and they were getting lost, so I wanted to document them to remind me Wendy Mitchell

15 I think it was part of my desire to spread the word, like with the Dementia Action Alliance, to demystify dementia and to spread awareness George Rook

16 'It wasn't a deliberate thought... it was like a diary really of my progress, and just thoughts and feelings and the odd poem. And there was no structure to it whatsoever, none, it was just an outlet, there was nothing generous about it, it was a me, me, me thing, it was just for me Valerie Blumenthal

17 So many people have the vision of an elderly person sat in a chair, unknowing of what's going on around them and unable to engage in anything, and that's what I thought dementia was until I diagnosed so there's a lot needs changing around that Carol Fordyce

18 Memory aide Journal Therapy Advocacy and campaigning Raise awareness in professionals Peer support Blogging as democracy - tell my story, my way, in my own time, to people around the world

19 People living with dementia Families Health professionals Organisations Giving confidence Understanding the disease Understanding the disease Used in training undergraduates Used in awareness training General public Led to newspaper articles, speaking engagements etc

20 It's humbling to think you're helping somebody, but if you're doing that then fine, and that's all it's about isn't it? Helping others Ken Clasper

21 I think blogging is a tremendously democratic tool, because it enables you to be heard... In the past it was just your immediate work group and social group, but now you can address the world Wayne Eaton

22 Blogging is not for everyone - but for some people it can be very positive Bloggers present themselves as they wish to be seen Hearing voices that don't always get heard (but there are still voices missing) Creates peer support networks Can lead to involvement in wider 'dementia community' Lengthy personal narrative can foster more understanding and acceptance

23 Jenni Brooks Sheffield Hallam University