Doing Dementia  CA is the primary method of analysis  Family conversations  Data collection  Ethics  Safeguarding the participants

Why study conversation?  CA is a research tool which can be applied to all talk-in- interaction  Courtroom  Business meetings  Interviews  Emergency calls  Investigation of the interactional strategies employed by people with dementia and their co-participants  The lived experience of dementia happens at home, everyday, in the small mundane decisions we make

Data collection  Informed consent  Privacy  Practical challenges – who will operate the recording device?  Recruiting participants

Ethics: informed consent capacity to decide confidentiality freedom from coercion Participants: early stage dementia acknowledging their diagnosis members of the Alzheimer’s Society Support by the Alzheimer’s Society Project Design

Ethics Proposal  Supporting letter from the Alzheimer’s Society  Information for Alzheimer’s Society staff  Information for potential participants  Accessible format ‘Easy Read’ (DH, 2010)  Given time to read, understand and ask questions  Contact information provided  Demographic questionnaire  Consent form

Informed Consent  Capacity to decide  Can the participant understand the research, and their part in it, well enough and for long enough, to make an informed decision?  Mental Capacity Act (2008)  Nuffield Council on Bioethics (2009)

Project design  A multiple case study.  A snap-shot of the conversational abilities of people with dementia and their caregivers.  Video data of around three hours from up to 12 dyads  To explore the communication strategies of PWD and their everyday conversational partners.

Recruiting participants Members of the Alzheimer’s Society valued this kind of research. Both people with dementia and caregivers felt it was an important area for research. Communication was one of the major issues that affected daily living in the early to mid stages of dementia.

Feedback Members told me…  They had too much on  Medical complications  Already involved in other research  Operating a video recorder would be problematic  They were ‘private’ people

Project design (2) A detailed single case study Mixed methods approach  Primarily CA  Semi-structured interviews  Observations from wider involvement with PWD  Audio recorded conversation

Participant consent Contact with Alz staff Discussion with researcher at Alz group Meeting at participants’ home Caregiver offers additional support

A complex case study Person with dementia Primary caregiver Other family members community

Thank you I am grateful for the support of the local branch of the Alzheimer’s Society and of course to the generous families who have taken part in this project.