Developing Person-Centred Metadata: A Case Study of the Behaviours in Dementia Toolkit
ABSTRACT
Terminology used in dementia care is fiercely contested. Advocates, health care providers, and researchers often have divergent perspectives on how aspects of dementia can and should be described. We created the Behaviours in Dementia Toolkit – a free, online library of resources available at behavioursindementia.ca – to equip health care providers and care partners with important health information to better understand and compassionately respond to changes in mood and/or behaviour that often accompany dementia. To centre the personhood of those living with dementia within our online library, we created an emergent metadata schema to support the information needs of our diverse audiences, which included people with lived experience of dementia, care partners, and multi-disciplinary health care providers (e.g., allied health, nurses, and doctors, care aides, etc.). This was an iterative process that utilized a combination of methods including a usability study, card sort activity, environmental scan, internal metadata brainstorming exercise, working group discussions, consultations with various stakeholders, and real-world application of the metadata description process. Our approach leveraged interdisciplinary expertise from the library and information studies, knowledge mobilization, dementia health care, and user experience fields, in addition to the lived experiences of people with dementia and their care partners. This interdisciplinary expertise was formative in shaping the dimensions of metadata development and to ultimately create and apply clear, accurate, inclusive, and intuitive terminology for diverse end-users. Creating a robust schema meant negotiating an unresolvable tension between labelling behaviour changes to enhance the navigability of the collection and avoiding pathologizing these behaviours and perpetuating stigma. Our approach was to reframe symptoms of behaviours in dementia (also called behaviours and psychological symptoms of dementia or BPSD in the clinical world) to focus on observable changes in mood or behaviour. This created space to move away from a focus on care partners’ or health care providers’ reactions to or discomfort with specific behaviours; it also allowed us to step away from interpreting normal human behaviours and emotions as deviant. By contextualizing the changes of mood and behaviour for the person living with dementia, we can affirm their holistic personhood and resist reducing them to a set of symptoms. This approach confers dignity, agency, and hope to people living with behaviours in dementia. This case study describes the process and outcomes of navigating the complexity of creating, refining, and implementing person-centered terminology in the context of the Behaviours in Dementia Toolkit. We illustrate how we grappled with the scope, nature, meanings, and assumptions of terminology about moods, behaviours, and symptoms associated with behaviours in dementia, and the decisions we undertook that guided us to our eventual launch version of the website. We also delve into the inner workings of our online library that are interwoven throughout the seamless and intuitive design of our end-users’ experience of the Toolkit website. Through this, we demonstrate that our design and end-to-end development of the Toolkit are anchored in the practice of person-centered approaches at their core, and that these values are embedded with thoughtfulness and careful consideration. As a result of our findings, we suggest the exploration and further theoretical development of the concept of person-centered warrant. We also share how lessons learned from moving beyond stigmatizing terminology to humanizing, person-centered terminology may be adapted to future projects in other contexts across the library and information, health care, and knowledge mobilization fields, and beyond.
Ubels, N., Tan, L., Albrecht, L. and Long, A. (2024). Developing Person-Centred Metadata: A Case Study of the Behaviours in Dementia Toolkit. Knowledge Organization, 51(7), 478. [Open Access]