Co-designing dementia diagnosis and post-diagnostic care: COGNISANCE
Dementia is characterized by a decline in memory and day-to-day functioning, resulting in life changing physical, emotional, and psychological stress on the person with dementia and their family. In New Brunswick (NB), there are approximately 15,000 people living with dementia and seven people develop dementia each day. The projected impact of new dementia cases poses challenges for NB primary care providers (PCPs) around diagnosing and supporting the growing number of patients and their families affected by this condition. This project aims to design, deliver, and evaluate an awareness campaign to improve how PCPs diagnose and support persons with dementia and their care partners. This research is embedded in a larger, international funded project co-led by teams in Canada, Australia, Netherlands, United Kingdom, and Poland, in partnership with the World Health Organisation, Alzheimer’s Disease International, and Dementia Alliance International. Our team is led by Dr. Henry Brodaty (Australia), and my role is a Co-Principal Investigator. We received €1,543,691 (approx. CA$ 2,296,988) over three years (2018-2021) from the European Union (EU) Joint Programme in Neurodegenerative Disease Research (JPND) Transnational call: Multinational Research Projects on Health and Social Care for Neurodegenerative Diseases. We have also received an additional $495,000 from the Government of New Brunswick’s Healthy Senior Pilot Project (I am the Nominated Principal Investogator). The project is referred to as the COGNISANCE project, which stands for CO-desiGning demeNtia dIagnoSis ANd post-diagnostic CarE.
The project will proceed through five phases over three years. Phase 1 (current phase) consists of surveys and focus groups with people at-risk or with dementia, their care partners, as well as PCPs and other health care providers (HCPs) to explore experiences of the current diagnostic process and post-diagnostic supports, including barriers and facilitators across settings in each participating province and country. Lessons learned from this phase will be carried forward to Phase 2, which will consist of the creation of bilingual dementia care toolkits that will enhance HCPs knowledge of diagnostic and post-diagnostic support, and promote changes in help-seeking behaviors in those at-risk or currently diagnosed with dementia. Phase 3 will involve the implementation of these toolkits through an awareness campaign. Phase 4 will consist of evaluating the awareness campaign using the Reach Effectiveness Adoption Implementation Maintenance (RE-AIM) framework. Phase 5 will focus on sustaining and scaling the project, including helping other locations beyond those involved in this project to develop their own awareness campaigns.
The awareness campaign will improve the knowledge of PCPs and other HCPs around the diagnosis and delivery of dementia care, which will enhance access to care and improve communication and quality of care in NB and across the five participating countries. The campaign will improve the awareness of programs and services for seniors who are at-risk for dementia and their care partners, to better direct them to the appropriate supports and level of care, which is a central focus for this funding call. This study provides the opportunity to share lessons learned and improve dementia care at a provincial, national, and global level.