Design Considerations for Self-management Technologies for People Living with Dementia and Informal Carers – Perspectives of Healthcare Professionals and Charity Workers

Dementia is a neurodegenerative disorder that leads to decline in memory, language, reasoning, and the ability to perform daily activities. It is linked to poorer quality of life for the person with dementia and their informal (unpaid) carers. While early intervention and access to adequate care are critical in slowing dementia’s progression and better managing associated symptoms, dementia is frequently only diagnosed at an advanced stage and care is often fragmented. To better understand how to meet the complex needs of persons living with dementia and their informal carers, 10 healthcare professionals and 10 charity workers from relevant community and charity organisations were interviewed. Topics covered included challenges and pain-points of the dementia journey, provision of care plans, communication amongst relevant stakeholders, and the impact of dementia on co-morbidities. A collaborative semantic thematic analysis was conducted and themes constructed included The Impact of Dementia; Gaps in Support for People living with Dementia and their Informal Carers; and Care and Collaboration, with subthemes of the impact of inadequate supports; reasons for support gaps; lack of formal, integrated care plans; and care strategies. Findings are discussed in terms of implications for the development of a holistic, multi-component digital platform to support persons with dementia and their carers.