Self-management and HeAlth Promotion in early-stage dementia with e-learning for carers - A randomised controlled trial

People who have been diagnosed with dementia often want to know more about their condition. Many express a wish for a place to meet others in similar situations. In the research project called SHAPE, individuals with dementia were offered a customized online course once a week for 10 weeks, lasting two hours each session. The course comprised four other participants and two trained course facilitators. The project aimed to understand if the knowledge, advice, and tips shared in the SHAPE course helped individuals with dementia living at home to utilize available resources in their daily lives, ultimately improving their quality of life. The project began on April 1, 2019, but faced an interruption due to the pandemic. The in-person group sessions were adapted into an online format using a secure virtual meeting room accessed through a dedicated app pre-installed on iPads provided to the participants. In total, 35 SHAPE courses were conducted, each spanning 10 weeks with one weekly session. Course materials, including a handbook delivered to participants' homes and an app called Berntsen used for the online course, were developed. Additionally, there was a separate e-learning course designed for the families of the participants. This was a randomized controlled study where 2/3 of the participants received the SHAPE course while the remaining 1/3 formed the control group, receiving regular support services from the local community. The final round of data collection is ongoing, and the control group will receive the educational intervention after the project period ends. Data analysis of the RCT study encompasses evaluating the impact on participants' sense of control, quality of life, mental health, and the cost-effectiveness of the intervention. To have a better understanding of how an online course for persons with dementia could be effectively implemented, the dedicated course facilitators were interviewed through focus groups. Analysis of this data is currently underway. Furthermore, co-design sessions involving various interest groups were conducted to develop a strategy for implementing the course. The SHAPE project is pioneering as it provides individuals with dementia an opportunity to attend an online course aimed at improving their lives while living with the disease. The course content underwent multiple revisions based on international research and input from patients and their families. Throughout the project period, regular national network meetings were held with healthcare professionals (such as dementia coordinators) in the local health service, emphasizing the critical collaboration needed for effective support of individuals with dementia living at home. There has been significant interest in establishing a knowledge-based course for individuals with dementia to learn about their condition and how to cope with a dementia diagnosis.

The SHAPE project is pioneering as it provides individuals with dementia an opportunity to attend an online course aimed at improving their lives while living with the disease. Throughout the project period, regular national network meetings were held with healthcare professionals (such as dementia coordinators) in the local health service, emphasizing the critical collaboration needed for effective support of individuals with dementia living at home. There has been significant interest in establishing a knowledge-based course for individuals with dementia to learn about their condition and how to cope with a dementia diagnosis. Experiences in running online courses for persons with dementia are positive, as long as the user interface of the solution is appropriately adapted and there is necessary support from formal and informal carers in the set-up.

We will develop and validate an intervention (SHAPE) in 372 people with mild dementia; combining self-management, health promotion, and e-learning. The study is a multi-site, randomized, controlled, single-blinded trial with parallel groups. The intervention group is compared with treatment as usual (TAU). The primary outcome is to evaluate the effectiveness of the intervention in improving self-efficacy in people with dementia compared to treatment as usual (TAU). Secondary outcomes are to evaluate the effectiveness of the SHAPE intervention in (a) improving mood, well-being, quality of life and health outcomes in people with dementia compared to TAU; (b) decreasing carer stress, general distress, knowledge about dementia and perceived access to support services compared to TAU; (c) producing health behaviour changes based on self- and family report compared to TAU; d) reducing utilization of health and social care and e) estimating the cost-effectiveness of the self-management compared to TAU (WP5). Our 36-month project is divided into eight work packages: Project management (WP1); Combining the interventions (WP2); Implementation Strategies (WP3); an RCT study (WP4) to measure health effects; a study of Economic effects (WP5); a Qualitative study (WP6) to understand and suggest improvement to the intervention; a Replication study (WP7) to prepare broader adoption; and Dissemination and Exploitation (WP8) to reach all stakeholders with targeted messages facilitating a broad reach and ensuring use of the intervention beyond the project.