Towards Personalised Dementia Care

Abstract

According to Person-Centred Care, as far as possible, people with dementia should be cared for in a way that takes into account their personality, life experiences and preferences. Personalisation is hence the core of Person-Centred Care, yet the approaches, recommendations and tools are lacking for this purpose. Therefore, the author investigated how this personalisation could be facilitated by design. Specifically, the author explored how to personalise the care for Behavioural and Psychosocial Symptoms of Dementia (BPSD). This is because BPSD contributes to the most stressful, complex, and costly aspects of dementia care. Non-pharmacological interventions for BPSD care have been developed, which offers ample room for personalisation. From the field of healthcare, the author drew on Person-Centred Care, and from there, she looked at BPSD from the lens of the Need-driven Dementia-compromised Behaviour (NDB) model, where BPSD is interpreted as a way for people with dementia to express their unmet needs. Factors contributing to BPSD have been categorised by this model, which could be unique for each person with dementia. From the field of design, she approached the challenge from the lens of Human-Centered Design and explored three design approaches that are most relevant in designing for personalised BPSD care, namely, Ergonomics in Ageing, Co-design and Data-enabled Design. The author hypothesised that a combination of these three design approaches could reveal insights into the factors contributing to BPSD, as mentioned in the NDB model, for each person with dementia exhibiting BPSD symptoms. She further hypothesised that gaining insights about these factors could facilitate the design of personalised dementia care. The author implemented a series of steps in evaluating these hypotheses from the literature and from the field. The learnings gained throughout the literature and field research enabled the integration of the three design approaches into Knowme, a toolkit for designing for personalised dementia care. The author concludes with a summary of research findings, a reflection on the research approach, and ends with recommendations for future work.