It’s not about the technology, it’s about people and human connections
A third of the population knows someone with dementia. With nearly 100,000 people in Scotland living with dementia and 700,000 informal carers across the UK, it is a growing concern. For businesses, it is also an opportunity. Because the cost of dealing with dementia is so high you can see this is a significant market, one that commercial producers are beginning to target.
One behaviour associated with dementia is known as wayfaring (previously called wandering). It can include pacing indoors or taking off on a walk. People may be trying to recreate routines from the past such as their route to work, the school run or activities that once connected them to a sense of themselves. The cost of wayfaring that goes wrong is very high, however, both in terms of stress for everyone concerned and the resources needed to deal with it. Police Scotland estimate the cost of missing person investigations as £30 million to £80m each year. Technology is a vital tool to help prevent people from getting lost or in finding them quickly if they do and police forces are beginning to trial different options.
Fitness watches and smartphones are already here but have traditionally been targeted at younger, healthier people. They can measure steps, distance walked or run, swimming, cycling, heart rate, UV exposure and sleep patterns. Samsung and other corporations are now turning their attention to creating health tracking devices for older and disabled people, in a booming market worth an estimated $34 billion by 2020.
There have been some strong reactions to the idea of ‘tagging’. The big question is, is it ok to directly track a person living with dementia using a gadget? The potential advantages need to be weighed against civil liberties. I think everyone would agree that using a tracker should never replace good quality care.
To me, it’s not really about the technology, it’s about the people and their human connections. Can a tracking device help people get out and about, interact with other people and engage with the natural environment? Having a change of scene and something new to look at makes us feel better and getting out reduces the risk of social isolation, even if it’s only a nod from an acquaintance or stroking a dog.
Managing safety and decisions about risk-taking shifts over time, away from the person living with dementia and often towards family carers. Many carers also have other caring responsibilities, jobs to maintain or health conditions of their own, and so, at some point, perhaps after a particularly scary incident, they may feel they have to take the decision, reluctantly, that the person with dementia should no longer go out on their own, even if they still want to. And similarly, in many nursing care homes the potential risks and liabilities outweigh the arguments for independent walking when residents have significant cognitive impairment.
So on the one hand we have a concern about the ethics of tagging and on the other hand the ethics of involuntarily home detention.
The Open University started looking into fitness trackers, conducted multiple surveys and field trials with some older people, and we are now working on a detailed study on attitudes and concerns of carers and medical professionals, because these are the people the data might be shared with. For example, there is an interest by these stakeholders to understand sleep disturbance or track changes over time in activity levels.
Through this research, it is clear that going out and returning safely can be problematic for people with dementia but getting out and about with at least some degree of independence has significant benefits for both health and wellbeing. If we want people with dementia to live well we must make use of this technology but designers should pay close attention to the user experience. People with dementia now
Tagging dementia suffers who wayfare may be useful but it’s not right to be at the cost of quality care,
says Dr Caroline Holland
need to be involved in the development of these devices for the future and consent to use a tracking device must be by continuous negotiation, because a person’s condition can change from day to day.
For more information on dementia care, access The Open University’s free online resources at http:// www.open.edu/openlearn/healthsports-psychology/dementiaawareness-week. Dr Caroline Holland is a Senior Research Fellow in the School of Health, Wellbeing and Social Care at The Open University.