S5: COGNISANCE: Co-Designing Dementia Diagnosis And Post Diagnostic Care

Abstract

Symposium OverviewPeople with dementia can live full and meaningful lives after diagnosis, but still many people with dementia and their family care partners are dissatisfied with the process of getting a diagnosis and may also receive limited, if any, post-diagnostic support. The international COGNISANCE project aims to improve the communication of dementia diagnosis and post-diagnostic support. It is a 3-year project supported by the EU Joint Program for Neurodegenerative Disease Research (JPND), with partners in Australia (lead), Canada, Netherlands, UK, and Poland.Based on the experiences of people with dementia, family care partners and health care professionals, and in partnership with them, we codesigned a website that provides structured information, resources and tools tailored to empower people with dementia and their family care partners. Effects of the campaign was evaluated using the RE-AIM framework. From our collective experiences, a ‘playbook’ was produced outlining how to deliver similar campaigns in other countries. Through these activities we aimed to improve health care practitioner’s diagnostic habits and provision of support, as well as increase help seeking by people with dementia and care partners.In this symposium, you will hear about the latest results of four workpackages of this COGNISANCE project: 1.A general overview of the rationale, goals, and design of the project will be presented by the principal investigator2.Data of a qualitative study will be presented on the experiences of receiving a diagnosis, and the barriers and facilitators towards post-diagnostic support, as well as on the differences and similarities between countries.3.The development of an online actionable guide Forward with dementia (www.forwardwithdementia.org) using a person-centered approach with target audience groups. The aim of this online guide was to support decision making and to help people find their way forward from a diagnosis of dementia.4.Data will be presented of the evaluation of the implementation and perceived impact of the Forward With Dementia websites and campaign in the five participating countries