Persistent long-term growth in the world’s population has brought with it significant public health concerns. The global demographic is ageing, chronic disease is on the rise and these concerns for health and welfare systems require action in a time of economic uncertainty. Over 46 million people worldwide are currently living with dementia and this figure is set to treble in the next 35 years (Prince et al., 2015). In the post below, Dr Jennifer Lynch looks at if Assistive Technology is a human rights issue for people living with dementia.
While the world wakes up to the need to address the multi-faceted challenges that are arriving with a rise in dementia, exactly how we as a society should be framing this ‘problem’ continues to fuel public debate. In 2016, the World Health Organisation (WHO) published its research priorities ‘to inform and motivate policymakers, funders and researchers’ in their bid to reduce the global burden of dementia by 2025 (Shah et al., 2016). Priorities were ranked by 162 researchers and stakeholders from around the globe, and the final list emphasised the need to focus on prevention, identification, reduction of dementia risk, quality of care for people with dementia and their carers and public awareness raising, among many others.
No sooner were the WHO priorities published than they were critiqued as insular and simplistic by one leading academic, who deemed the exercise to be little more than a funding plea for current, ongoing research that could only hope to make incremental advances in our understanding of this complex disease (Schneider, 2016). ‘If WHO had organised a different group of experts—e.g. geriatricians, caregivers, social agencies, and hospitals—then they might have arrived at a different set of priorities’, Schneider contended.
Indeed, campaigners such as Dementia Alliance International (DAI) – a global support and advocacy organisation run by and for people with a medically confirmed diagnosis of a dementia – have long argued that the dominant medical narrative of dementia as a disease associated with irreversible decline has suppressed a more confronting debate about how society should respond to prevent people living with dementia from experiencing exclusion and isolation. DAI’s high-profile co-founder and CEO, Kate Swaffer has particularly campaigned for a change in the language used to discuss dementia – such as references to a ‘ticking time-bomb’ and ‘suffering’ – which she argues can exacerbate the stigma towards people living with the disease (Swaffer, 2014).
At the heart of this perspective is an approach based on fundamental human rights and the pursuit of a disability rights agenda. This has implications for the rights of people with dementia in public policy and under the law – for example, providing protections from discrimination under the United Nations Convention on the Rights of Persons with Disabilities.
The human rights perspective also has implications for how support for people living with dementia should be shaped within our communities. In a recent report on evidence for community engagement with dementia in the UK, researchers found 3 potential drivers or motivations (Goodman, Buswell, Russell, Bunn, & Mayrhofer, 2016):
1. Compassion: people living with dementia need support to maintain involvement with their local communities
2. Utilitarian: we need to ensure businesses and services are equipped to respond to the increasing numbers of people living with dementia
3. Rights-based: people with dementia have a right to determine what they need to be an active member of their community
An area of community engagement that could be consistent with a rights-based approach is the use of assistive and digital technology to empower people, facilitate active participation and enable them to take control of how they access services. This type of technology takes many forms, from telecare equipment that monitors people’s changing needs and risks at home, modifying the environment and providing alerts and prompts; to digital devices that can support virtual communities, access to information and services, and sophisticated monitoring of people’s movements and locations.
The technology sector appears unbounded in its ability to produce creative technological support for care and health services – such as the development of virtual reality experiences for people living with dementia in care homes. Nevertheless, research has also shown that many people have become used to adapting everyday objects to replicate the support that assistive technology can give in a process known as bricolage (Greenhalgh et al., 2013). One such example from a recent study is of a man who bought a chicken ornament with a sensor triggering it to ‘crow’ when someone walked past it. He placed it by the front door so that he could respond to his wife, who was living with dementia, if she attempted to go out without alerting him.
This engagement with bricolage perhaps raises questions about the appropriateness of currently available technologies specifically designed to support people, as well as the timeliness and quality of support being provided to family carers. Other examples, such as the setting up of webcams to continuously monitor a person with dementia, may constitute a breach of human rights.
The Mental Welfare Commission for Scotland has issued guidance to ensure care is taken when using assistive technology to protect individuals’ rights. It states that technology should never fully replace direct contact with care-givers, and it should not be stigmatising or degrading for the user. This means technology use should be discreet, enhancing the freedoms of the user rather than restricting them, and decisions about it should follow a rights-based approach with full participation from the individual concerned.
If assistive technology is going to meet the needs of people living with dementia from a human rights perspective, then a balance must be struck between the provision of technologies with the potential to become intrusive and infantilising and the enabling of continued engagement in local communities and activities. Ultimately, meaningful participation of people living with dementia in decisions about technology design and use is the only way to improve people’s lived experiences and ensure that human rights are top of the agenda