The creation of resource that will enable people with dementia and those who support them to access selfmanagement advice through the AHPDementia Twitter account.

Abstract

Executive Summary

Alzheimer Scotland is a third-sector organisation that aims: “to make sure nobody faces dementia alone” by providing resources and education to people with dementia and those who support them as well as the wider public (Alzheimer Scotland 2021a, p.1). They also play a key role in advocating for the rights of people with dementia and funding critical research (Alzheimer Scotland 2021a). Dementia is the chronic or progressive loss of cognitive functioning, the most common type being Alzheimer’s disease. In Scotland, an estimated 90,000 people are currently living with dementia (Scottish Government 2021). Rising numbers (Scottish Public Health Observatory 2020) are putting pressure on services that must deliver person-centred, quality care to meet the wide-ranging needs of this population (National Institute for Health and Care Excellence 2018). Connecting People, Connecting Support (2017) is a Scottish Government strategy, created in partnership with Alzheimer Scotland, which requires Allied Health Professionals (AHPs) to: “develop and/or adopt models of practice based on the evidence and which reflect greater use of self-management, technology-based, co-created and partnership approaches” (Alzheimer Scotland 2017, p.8). This drive towards the promotion of self management, ensures people have the knowledge and abilities to successfully manage their own needs as effectively as possible (De Longh et al. 2015). It also helps to reduce the strain on services (De Silva 2011). The National Dementia Strategy (Scottish Government 2017) also highlights the need for self-management. The AHPs at Alzheimer Scotland have moved towards using Twitter, Facebook, and Instagram to deliver advice and guidance on a range of topics to assist people to live well with dementia. Although limited, there is some evidence that people with dementia and those who support them use the internet to access information, campaign and share their experiences (Allen et al. 2020; Talbot et al 2020; Talbot et al 2021). There are policy

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documents and guidelines that make clear the need for the rights of people with dementia to be met with regard to accessible information. People with dementia may experience occupational deprivation (Townsend 2012) and any difficulties accessing self-management advice and guidance may only exacerbates the situation further. Therefore, the aim of this project was to create a resource based on the information gained from a literature review that will enable people with dementia and those who support them to access self-management advice through social media. This required the identification of the facilitators and barriers to accessing information for people with dementia and those who support them which then informed the creation of a resource to enable people with dementia and those who support them to access the AHPDementia twitter account. A literature review was carried out and two themes were identified: the use and effectiveness of Easy Read and the creation of Easy Read. This, along with existing guides on making information accessible, were utilised to create a resource to increase access to the AHPDementia Twitter account. Subsequent to the creation of this resource, an abstract was written for the Alzheimer Europe Conference 2021 (see Appendix A), the guidelines for which are outlined in Appendix B. Limitations in the creation of this resource including the inability to co-create or trial it was acknowledged. The strengths and limitations of the project as a whole were also considered and recommendations were made for future development and sustainability.