118 research outputs found

    Talking Lines: A Research Protocol Integrating Verbal and Visual Narratives to Understand the Experiences of People Affected by Rarer Forms of Dementia

    Get PDF
    People affected by rarer forms of dementia often have a long and difficult experience obtaining a diagnosis and appropriate support, impacting family, employment and social relationships, quality of life and wellbeing. For this population progressive cognitive symptoms affect skills other than memory and disproportionately occur under the age of 65 years, often resulting in misdiagnosis and lack of appropriate care pathways. The objective of this study will be to better understand the subjective experience of the time period from first noticing symptoms to obtaining a formal diagnosis, through to accessing support, and onward to the present time. Through the concurrent use of line drawings and video-recorded interviews we will collect the stories of people living with different rarer dementias and/or family members who are care partners in Canada and the United Kingdom. Narrative and visual analysis will be used in parallel to methodologically explore how line drawing and verbal discourse interact and inform each other to construct knowledge, and how the use of drawing lines might enrich research interviews and increase accessibility of research participation. This novel research approach may also have implications for clinical interviewing, support services, and public engagement. To the best of our knowledge, this is the first study to retrospectively explore over time the experiences of people affected by rarer forms of dementia from initial symptoms—to diagnosis—to accessing support—to the present, using visual and verbal methodologies

    Conceptualising and Understanding Artistic Creativity in the Dementias: Interdisciplinary Approaches to Research and Practise

    Get PDF
    Creativity research has a substantial history in psychology and related disciplines; one component of this research tradition has specifically examined artistic creativity. Creativity theories have tended to concentrate, however, on creativity as an individual phenomenon that results in a novel production, and on cognitive aspects of creativity, often limiting its applicability to people with cognitive impairments, including those with a dementia. Despite growing indications that creativity is important for the wellbeing of people living with dementias, it is less well understood how creativity might be conceptualised, measured and recognised in this population, and how this understanding could influence research and practise. This paper begins by exploring prevailing concepts of creativity and assesses their relevance to dementia, followed by a critique of creativity and dementia research related to the arts. Perspectives from researchers, artists, formal and informal caregivers and those with a dementia are addressed. We then introduce several novel psychological and physiological approaches to better understand artistic-related creativity in this population and conclude with a conceptualisation of artistic creativity in the dementias to help guide future research and practise

    Symptom-led staging for semantic and non-fluent/agrammatic variants of primary progressive aphasia

    Get PDF
    INTRODUCTION: Here we set out to create a symptom-led staging system for the canonical semantic and non-fluent/agrammatic variants of primary progressive aphasia (PPA), which present unique diagnostic and management challenges not well captured by functional scales developed for Alzheimer's disease and other dementias. METHODS: An international PPA caregiver cohort was surveyed on symptom development under six provisional clinical stages and feedback was analyzed using a mixed-methods sequential explanatory design. RESULTS: Both PPA syndromes were characterized by initial communication dysfunction and non-verbal behavioral changes, with increasing syndromic convergence and functional dependency at later stages. Milestone symptoms were distilled to create a prototypical progression and severity scale of functional impairment: the PPA Progression Planning Aid ("PPA-Squared"). DISCUSSION: This work introduces a symptom-led staging scheme and functional scale for semantic and non-fluent/agrammatic variants of PPA. Our findings have implications for diagnostic and care pathway guidelines, trial design, and personalized prognosis and treatment for PPA. HIGHLIGHTS: We introduce new symptom-led perspectives on primary progressive aphasia (PPA). The focus is on non-fluent/agrammatic (nfvPPA) and semantic (svPPA) variants. Foregrounding of early and non-verbal features of PPA and clinical trajectories is featured. We introduce a symptom-led staging scheme for PPA. We propose a prototype for a functional impairment scale, the PPA Progression Planning Aid

    Mediated Habits: Images, Networked Affect and Social Change

    Get PDF
    While many people remain hopeful that particular images of injustice will have the power to catalyse progressive transformation, there is also widespread belief in the inevitability of ‘compassion fatigue’. Bringing philosophers of habit into conversation with contemporary scholars of affect, visual culture and digital media, this article argues for a more nuanced understanding of the links between images and change – one in which political feeling and political action are complexly intertwined and repeated sensation does not necessarily lead to disaffection. When affect acts as a ‘binding technique’ compelling us to inhabit our sensorial responses to images, I suggest, we may become better attuned to everyday patterns of seeing, feeling, thinking and interacting – and hence to the possibility of change at the level of habit. This article thus contends that thinking affect and habit together as imbricated may enable us to better understand the dynamics of both individual and socio-political change today

    BOURDIEU’S TWO SOCIOLOGIES OF KNOWLEDGE

    No full text

    Reply to Baldwin

    Full text link

    Structure After 50 Years: The Anatomy of a Charter

    Full text link
    corecore