Abstract

People living with dementia should be at the center of decision-making regarding their plans and goals for daily living and meaningful activities that help promote health and mental well-being. The human-computer interaction community has recently begun to recognize the need to design technologies where the person living with dementia is an active rather than a passive user of technology in the management of their care. Data collection comprised semi-structured interviews and focus groups held with dyads of people with early-stage dementia (n = 5) and their informal carers (n = 4), as well as health professionals (n = 5). This article discusses findings from the thematic analysis of this qualitative data. Analysis resulted in the construction of three main themes: (1) maintaining a sense of purpose and identity, (2) learning helplessness and (3) shared decision-making and collaboration. Within each of the three main themes, related sub-themes were also constructed. There is a need to design technologies for persons living with dementia/carer dyads that can support collaborative care planning and engagement in meaningful activities while also balancing persons living with dementia empowerment and active engagement in self-management with carer support.

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