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.