Co-creating a virtual community to support family carers for people with dementia

Background: Family carers for people with dementia face a multitude of challenges in their caregiving roles.

In recent years, digital health solutions have been arising and particularly, online communities such as online health forums have become an increasingly popular resource.

Our systematic review demonstrated online health forums are a valuable source of support for family carers seeking support and assistance.

However, no platform is available designed by and with family carers of people with dementia to connect as peers, reduce isolation and address information needs.

Aims and Objectives: The aim of this co-design study is to cater to the support and information requirements of family carers for people with dementia.

The objectives are: • To define the support priorities of family carers of people with dementia, to build a sense of community and social inclusion in a virtual platform. • To explore the knowledge and information deficits in healthcare appointments that draws people to online solutions and how best to address deficits in a dedicated virtual platform for carers of people with dementia. • To investigate how to incorporate a sustainable moderator function that facilitates information sharing that is accurate, accessible, and enabling from the perspectives of family carers and healthcare professionals. • To co-design a virtual platform prototype with family carers and professionals and undertake user acceptability testing to identify opportunities to strengthen, and requirements for use, ready for feasibility testing.

Methods: To better address the specific needs of this caregiver population, we will use a co-design approach and user-testing to develop an online platform aimed at providing tailored peer support and accurate information to family carers of people with dementia.

The design incorporates a collaborative and iterative process to create the platform involving family carers of people with dementia, healthcare professionals and a platform design expert, participating in a series of co-design workshops.

Through these workshops, we will gather insight into the unique needs, preferences, and expectations of family carers regarding the co-creation of this online platform. Subsequently, we will use these insights to inform the development of the online platform. The co-design workshops will follow O Cathains Partnership Approach to intervention development.

A prototype of the online platform will be developed and user-tested with family carers and healthcare professionals to identify and understand the usability of the platform.

This supportive platform will be co-designed with family carers and healthcare professionals to maximise the potential benefit, usability, and sustainability of the platform ready for feasibility evaluation if benefit is apparent. Timeline for delivery: This study will be conducted for a duration of 12 months.

Within this timeline, three workshops, and one user-testing workshop will be completed. A prototype of the virtual peer-to-peer supportive platform will be developed.

Anticipated Impact and Dissemination: The anticipated impact and dissemination will include engagement and publication of the platform; healthcare professionals using this resource to signpost family carers to for support outside of the consultation; and publish the virtual platform model for support, social inclusion, and information for family carers of people with dementia.