Digital health's impact on integrated care, carer empowerment and patient-centeredness for persons living with dementia

Background: E-health or digital health technologies endeavour to connect key stakeholders and thereby lay the foundation for better integrated as well as potentially more patient-centered care. However, despite the promise of empowerment, efficiency and value, digital health has yet to become part of the daily lives of the people who care for persons living with dementia. Objectives: This study examines what role digital health technologies play in enhancing integrated care, carer empowerment and the provision of patient-centeredness in dementia care. In particular, the focus is on how these carers may experience empowerment through digital means and if, or how, this engagement translates into better care for those persons living with dementia. Methods: Eight qualitative case studies are conducted comprising semi-structured interviews before, during and after engagement with the technology. This data is used for each case, as well as health information and assessments, to explore the impact of digital health engagement and support on family carer empowerment and patient-centered care for persons living with dementia. Findings: This study indicates that technology can empower both family carers and persons with dementia, and enhance many aspects of their clinical care. However, it may also increase the responsibility they feel (a 'responsibilization' of carers so to speak) in ways previously unanticipated. As much as carers are capable of embracing the complexities of caring for those persons with dementia, healthcare professionals and those designing technological support need to understand the tension between empowerment and responsibility that digital health engenders in family carers, in order to design and implement systems that can provide beneficial supports. Public interest summary: Many of us know someone with a diagnosis of dementia through family and the wider community. Whilst many persons living with mild dementia live fulfilling and independent lives, many rely on a family carer for more complex tasks, such as the management of their healthcare. This paper explores if and how health technologies can support carers in managing the clinical aspects of care, thus relieving stress and empowering them to provide supported care. This was achieved by installing a connected technology system for six weeks in the homes of persons living with dementia and exploring carers’ experiences. While some carers benefited from the real-time clinical supports, experienced empowerment and found that their caring capacity improved, the system also created stress and responsibility. It is clear that digital health systems have potential. However, they need to be designed in collaboration with the ‘real persons’ who will use them – carers, as well as the persons living with dementia.