GPS dementia tagging: is it too demeaning?

Is the GPS tagging of people with dementia an infringement of personal liberty or a safe route to empowerment and independence? Vern Pitt examines both sides of the argument

Stress, worry, confusion and desperation are emotions felt not only by people with dementia but by their carers too. One solution is for patients to carry global positioning systems (GPS) so that they can be found easily should they become disoriented and lost. Although the national dementia strategy supports exploring the use of GPS, opponents say monitoring people’s movements may breach their human rights.

The technology itself has been available for the past 10 years but it is gaining more prominence as government policy places increasing emphasis on the use of telecare.

Most systems involve a patient carrying a GPS tracker which transmits their location to a central computer. This may set off an alert for a carer or relative if they wander outside a given area. Some systems allow relatives to check the patient’s location for reassurance.

Prone to wandering

Despite up to 60% of dementia patients being prone to wandering, the use of GPS remains patchy partly because of fears about its human rights implications. “Now it is possible to reduce this technology to very small levels, so chips might be sewn into people’s clothes,” says Clive Evers, head of professional liaison at the Alzheimer’s Society. The concern is that this level of miniaturisation allows tracking to be carried out without consent, an issue in itself. Approaching patients to discuss the option of tagging early in their diagnosis is vital if consent is to be granted before the patient becomes unable to do so under the Mental Capacity Act 2005.

Although people may fear infringements on their privacy, the alternative is to lock front doors or use other methods of restraint which are more intrusive. “In extreme cases drugs would be used to prevent people wandering,” says Stephen Lindsay, a researcher at Newcastle University, who worked with service users to develop the technology in 2009.

Safety first

When people do wander, tracking systems need not result in restrictions on their movement, says Les Clark, director of strategy and service development at care provider Housing 21, which has several clients using GPS tagging. “You don’t have to bring them back home but someone can make sure they are safe,” he says.

Lindsay says his research found the biggest concern was the stigma attached to being tagged like a criminal. In tackling that stigma, the Alzheimer’s Society has adopted the term “safer walking” to describe the GPS systems. However, Housing 21’s system alerts the police who then check on the person wearing the tag. “The stigma is outweighed by the safety,” adds Clark.

Stigma results largely from the prominent design of many tags. Lindsay says: “These devices are often something like a red and white box that you wear on your waist band. People were dead set against that. They also didn’t want a device that made noises or had flashing lights because they had images of it going off in the supermarket and everyone looking at them.”

Consequently, Lindsay’s team piloted devices that were easily disguised as iPods or notepads. It is unclear, however, whether these will be available soon.

Another concern is how the data is used. Lindsay found willingness to wear a tag as long as family members were the only people knowing where they were. Clark says there is an obligation on organisations which access the data to do so sensitively. “You activate the system only where there’s a genuine concern,” he says. He emphasises the importance of robust information policies, saying that it is not possible to eradicate its misuse but it can be dealt with when it happens.

Information fears

Fears about the quantity of information collected need also to be allayed, says Lindsay. “If you present a barrage of information about where someone has been and what they are doing, they wouldn’t like it,” he says. Instead, it is best for systems to update intermittently, every few minutes perhaps.

Despite concerns, the use of safer walking technologies looks set to spread. Evers believes the personalisation agenda will provide the force to drive its adoption.

However, Dr Frank Miskelly who has trialled the technology at Imperial College London, says the liability for when it fails to safeguard an individual has already deterred some developers and may act as a brake on its widespread adoption.

Of more concern is the challenging ­budgetary environment in which councils are now operating, which may mean it is seen as a cost cutting measure. Clark describes this as his “primary concern”. He is clear that this is in no way a replacement for human support services, although he does say there may be savings to be made from its use.

Investment in GPS tagging would be pointless, however, if it did not deliver for patients. Lindsay, Clark, Miskelly and Evers all agree there are benefits to be had.

Now the industry must overcome the fears of service users and make it a usable option for councils if it is to help more than a select few.

Case study

Caroline Ogden: Married to a dementia sufferer

‘It made a huge difference to my peace of mind’

Caroline Ogden’s husband, Peter Milne, has Alzheimer’s and vascular dementia which causes him to wander.

“He would go out and he would never return,” Ogden says. “Sometimes I would come back from school [where she taught] to find the front door open and he wasn’t here.”

She has been on the verge of calling the police after his disappearances.

It was a relief when her husband started using a tracking system, which he was happy to do. “That made a huge difference to my peace of mind,” she says.

Ogden applauds the system for allowing Milne to continue having a normal life for as long as possible. She says: “He liked to go down to the shops. If I needed potatoes he would say, ‘I’ll go and get them.’ When he had the tag he could do that and if he didn’t come back with potatoes it wasn’t a catastrophe.” Milne has since entered residential care.

She says she wishes she’d had the tags earlier because it would have allowed her to continue in work longer and would have reduced anxiety.

Good practice points

● Tagging is useful for dementia sufferers who wander but more difficult for severe cases because of issues of consent.

● When patient consent is difficult to obtain the provisions of the Mental Capacity Act 2005 should be followed.

● Tagging is suitable for people in their own home and sometimes those in a residential care setting provided there is someone to respond to problems.

● GPS can only minimise risk, never eliminate it because of the inevitable response time lag. Therefore, it should not replace formal care arrangements.

Read more about telecare and assistive technology from the Community Care archives

Published in the 4 March 2010 edition under ‘Tagging and the Freedom of Movement’

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