Keys to their own voices: social tags for a dementia ontology as a human right

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Dementia encompasses a range of incurable brain conditions such as Alzheimer’s disease, which affected 47 million people worldwide in 2015, a figure that is expected to triple by 2050. It is therefore a worldwide public health priority (World Health Organization, 2017). While the symptoms differ among individuals to some extent, the World Health Organization (WHO) defines them as follows: difficulties with everyday tasks; confusion in familiar environments; difficulty with words and numbers; memory loss; changes in mood and behaviour. Caring for people living with dementia (PLWD) is a burdensome task and it tends to fall to family members, which causes them considerable stress. The WHO’s Global Action Plan on the Public Health Response to Dementia 2017–2025 focuses on dementia prevention as well as on improving the lives of PLWD and their carers so that they ‘live well and receive the care and support they need to fulfil their potential with dignity, respect, autonomy and equality’. The United Nations has called for dementia to be a public health priority in all countries (UN News Centre, 2015).

This chapter will first explore the uniquely challenging context of information needs and dementia. It will then use dementia as a case study to demonstrate how user-generated hashtags, or other forms of surrogate representation, could be applied in a linked data environment in order to improve access to care, resources, people and other needs.
Original languageEnglish
Title of host publicationSocial Tagging for Linked Data Across Environments
Subtitle of host publicationA New Approach to Discovering Information Online
EditorsLouise Spiteri, Diane Pennington
Place of PublicationLondon
Publication statusPublished - 30 Sep 2018


  • social tags
  • dementia
  • own voices
  • Alzheimer's
  • ontologies
  • Linked Data


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