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P1‐668: SELF‐STIGMA MANIFESTATIONS AFTER DIAGNOSTIC DISCLOSURE OF EARLY STAGE ALZHEIMER'S
Author(s) -
Gajardo Jean
Publication year - 2018
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1016/j.jalz.2018.06.680
Subject(s) - stigma (botany) , dementia , psychology , clinical psychology , nonprobability sampling , psychiatry , qualitative research , disease , medicine , population , environmental health , pathology , social science , sociology
Background: Decision-making about driving and transitioning to non-driving is a challenging and complex issue faced by all drivers diagnosed with dementia and their families. To address the gap in evidence-based interventions that support individuals in this process we developed the Driving Cessation Decision-Making and Coping Framework and Toolkit (DCDT). Our objective is to further develop and refine the DCDT (content, design and mode of delivery), based on the perspectives of key informants, to facilitate its effective implementation in settings that support older adults with dementia. This study reports on the development of the DCDT and the results of the initial phase of a multi-phase qualitative research project aimed to evaluate the DCDT’s design and implementation process. Methods: A focus group (n1⁄48) comprised of key stakeholders (family members, a former diver with dementia and a social worker) was conducted at an Alzheimer Society organization, following a presentation of the DCDT. The interaction element in focus groups allows for multiple point of views, and considerations of various understandings and collective ideas about a topic. Participants were asked to report on their impressions of the DCDT including its strengths and weaknesses. The discussion was audio-recorded and transcribed verbatim for analysis. Data analysis techniques included thematic coding and inductive analysis. Results: Interrelated themes derived from participants’ accounts focused on the delivery of the toolkit including its mode of delivery, structure and accessibility. Across these areas, themes of consideration for designing and disseminating the toolkit are: integrating a systems-oriented approach (e.g. targeting GPs and transportation organizations); accounting for varied contexts of users (e.g. adapting language to address specific needs, stages of driving cessation and age cohorts) and attending to how users experience the toolkit (e.g. ensure it promotes a sense of autonomy and is non-stigmatizing). Conclusions: Obtaining the perspectives of individuals with dementia, their family caregivers and healthcare/ service providers is critical to designing an intervention toolkit that can effectively assist with decisions about driving and providing support with the transition to non-driving. This feedback is essential throughout the design process to ensure that on-going considerations raised by these key stakeholders continue to be addressed.