The Dementia Data Reciprocity Project: Digital Devices as a New Paradigm for Caring and Sharing
New Care Tools, New Caregiving Responsibilities
As people develop dementia, they increasingly depend on family carers such as their spouses, adult children, and extended relatives to help them complete everyday activities and meet their physical, cognitive, and social needs.
To cope with these changes, families affected by dementia increasingly use smart and digital assistive technologies in the home. These include everyday devices such as cellphones, computers, tablets, and smart appliances to more specialised tools such as personal sensors, alert devices, biomedical devices that track specific dimensions of a person’s health and wellbeing.
But digital tools also create new tech support and information management responsibilities for family carers. Digital housekeeping refers to the responsibility for maintaining the digital infrastructure of a home similar to IT personnel in an office environment. Personal information management refers to when carers become responsible for maintaining and protecting the sensitive personal data collected by information and digital technologies.
Presently, many family carers are underprepared to be digital housekeepers and personal information managers after the diagnosis of a loved one. This transition can be especially challenging when family carers are older adults themselves.
Coping with Dementia Using Technology
Dementia refers to a collection of memory, language, problem-solving and cognitive difficulties caused by physical changes to different regions of the brain that negatively affects a person’s ability to live independently and participate in their local community.
Although dementia typically affects older adults and is associated with ageing, population growth and increased life expectancy associated with improved public health measures, advances in medical care, and adoption of healthier lifestyles means that the number of people affected by dementia globally is growing, including within the Republic of Ireland.
As an increasing number of older adults are affected by dementia globally, younger generations will increasingly rely upon digital and assistive technologies to ensure their loved one’s physical, cognitive, and social needs are met.
Simultaneously, the increasing use of digital technologies by people living with dementia and family carers will necessitate greater awareness of technology and information management techniques and best practices to ensure the protection of personal data of people living with dementia.
Personal Data Can Enhance Our Understanding of Dementia and Care
Integration of digital and assistive technologies into home creates real world data about their users. Real world data is observational data generated outside of controlled clinical or research settings. Real world data can supplement traditional research on diagnosis and treatment of dementia, and support the planning and delivery of services to those in need.
Real-world data is currently underutilised in the detection and management of dementia due to limited infrastructure for sharing personal data with researchers. There are also significant ethical concerns related to privacy and informed consent by people living with dementia and family carers.
The Dementia Data Reciprocity Project (DDRP)
The Dementia Data Reciprocity Project (DDRP) aims to support the effective curation of personal data and to enhance data sharing between researchers, service delivery organisations, and families affected by dementia.
To achieve these goals, Dr. Robert Ferguson is speaking with families and dementia community stakeholders about their information needs and practices. Results will be used to reduce burdens associated with data and technology management experienced by families and develop pipelines for sharing data with trusted community stakeholders.
Digital Caring in Ireland
Preliminary conversations with dementia community stakeholders currently suggest that integrating digital technologies into dementia care and research is challenging for a variety of reasons.
Both family carers and people living with dementia value digital devices for tracking changes in health, seeking information, cognitive stimulation, and social interaction but rarely consider the long term fate of personal data generated by technologies in the home. As a result, data is rarely preserved for future use or shared beyond members of the immediate household.
On the other hand, dementia community stakeholders recognise the value generated by digital technologies in homes and are starting to develop resources that support families seeking to integrate more digital technologies into their care routines. For example, Alzheimer Scotland created the About Digital and Me resource to increase awareness of existing assistive and digital devices on the market and help families select technologies that meet their specific needs.
In the future, such resources can be expanded to better prepare families for technology and information management tasks that arise in care and facilitate relationships with researchers and service delivery organisations that can benefit from real world data on dementia.