People with a diagnosis of dementia have often been the subjects of qualitative research; by contrast, this article sets out to reflect on the positioning of people living with dementia in inclusive or ‘co-produced’ research and the connections between the personal and the collective voice in research. The article seeks to explore the unique hallmarks of inclusive dementia research, compared with some of the other models of inclusive research. Drawing on our experiences in one study, we describe the stages at which the research was set up, how a group of people living with dementia got involved in doing research, and their role in a conversation analysis of video interaction. We then use short extracts from recorded data of our meetings to discuss some of the tensions and challenges in this type of inclusive research, including political identification, the unequal power balance in inclusive research and the unique contributions of people living with dementia. Our ensuing argument is for a type of guided spontaneity, where lived experience (and future lived experience) has a space to be valued and to offer insights for research. The implications of inclusive research are about the practical, and about impact. These messages are contained in a postscript written by the last three authors Roy James, Sandy Read and Harry Davis, who are the members of the dementia research group.
The Dombrock null reported here is due to a single Phe62Ser mutation. The expression data confirmed that 62Ser is responsible for lack of cell surface Do, and protein modeling suggests the mutation disrupts important aromatic side chain interactions between Phe62 and His160. Production of an antibody to a high prevalence Dombrock antigen (anti-Gya) in this patient was consistent with complete absence of Dombrock/ART4 protein.
There has been surprisingly little research capturing people’s everyday lives in the early years following a diagnosis of dementia. This project was co-produced by three people with dementia and two university researchers. The co-researchers with dementia formulated the aims of this project as: (1) to explore post-diagnosis life with dementia and (2) to use data collection methods as a form of peer support and confidence building for the participants. The intent was to provide the opportunity to learn new skills and support participants to share their experiences without putting them on the spot. Five participants with recent diagnoses received a photography lesson and cameras to take photographs of their everyday lives. This was followed with a focus group in which the photographs were discussed. The participants used their photographs to explain: (1) the differences between their past and present with dementia, (2) how dementia affected their thought processes, (3) pets and grandchildren as facilitators of reciprocal joy and support, (4) the emotional effects of living with a dementia diagnosis, and (5) the solace and stability of nature in a changing world. The participants’ creative use of photography supported them to express the complex emotions felt after a diagnosis of dementia and they reported the benefit of doing this in an environment with peers going through the same experiences. The role of the co-researchers with dementia was the key to the success of this project, drawing on their own experiences to design the project and support the participants. Future research should draw on the experiences of people with dementia to design research projects and care interventions.
Quizzes are a ubiquitous part of the dementia social care landscape. This article explores why. Using an ethnographic approach which draws on close analysis of communication, we examine dementia quizzes as a ‘social practice’, and what such a lens can tell us about their popularity in social care settings. Vignettes of real interactions drawn from ten different quizzes recorded in four different group settings attended by 28 people living with dementia and 15 staff members are presented to highlight particular issues. We show that the conditions of post-diagnosis dementia social care are uniquely well suited to an activity such as quizzes which are malleable, requiring little preparation or materials, and impose a communication framework which can help to organise the interactional space. Quizzes also draw on previously forged interactional competences, such as turn-taking and question–answer sequences, a skill that has been shown to persist even as dementia progresses. Finally, we argue that the meaning of quizzes with people with dementia feeds into wider societal values and associations attached to memory, dementia and personhood. The extent to which quizzes are akin to a ‘test’ or a fun and enjoyable social activity rests in how they are enacted. We suggest that practice can be adapted, developed and made more inclusive through input from people living with dementia themselves.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.