The other week I saw this article about Sussex police defending their use of GPS locators to find dementia patients who wander off. It opens with the following paragraph
Police have defended a "barbaric" decision to buy GPS locating devices to trace people with dementia who disappear.
then continues with the following
Sussex police have bought six battery-powered locators as part of a attempt to save money and time spent on searching for dementia patients.
The National Pensioners Convention described the introduction of the devices as "barbaric" and suggested people could be stigmatised and made to feel like criminals.
The Mindme GPS device is monitored by Chichester Careline, run by Chichester district council, and supports vulnerable people 24 hours a day. It can be attached to house keys or kept round a person's neck and enables those who become lost or disorientated to be found by their families through a website or the careline.
As long as wearers have a mobile signal, they can be located anywhere in the world, officials said. Information on their whereabouts is given only to the carer or family after security checks.
The device is seen as a way of helping police who say they are regularly called out to help find people with dementia.
Chichester wrote about the service themselves in New technology is transforming the lives of those with dementia. This also contains a story about someone who is using the service.
A week or so later I spotted Debate about GPS for people with dementia needs to be based on fact which says
Discussion of the Sussex example on the Today programme illustrated the intensity of emotions and unwillingness to consider any potential application with Dot Gibson, general secretary of the National Pensioners Convention, dismissing any use of the devices. Her view was that the scheme was tantamount to imposing an Asbo on people with dementia, and was "inhumane", "barbaric" and flouted their human rights.
There are risks in using new technologies to substitute for care, but they can be important tools as part of a package of care and support. What is vital is that debate should be informed by the facts and not by knee-jerk alarmism and prejudice.
And I couldn’t agree more with this last paragraph. The debate should be informed and thought of from all angles.
I also did a quick search of the Alzheimer’s Society Forums and found this thread about it. The interesting thing here is that everyone posting has first-hand experience of dementia. There are a lot of “it depends” but also a lot of “tag me when the time comes”, which is more in line with this Guardian article from a dementia sufferer.
From all of these places, there are a few areas that seem to have been picked out and given a lot of focus:
- terminology - the use of the phrase tagging is unhelpful and tends to give a perspective of prisoner tagging/dog tagging. This is not a good comparator and it is a very emotive word. The system has been described as barbaric, and that it restricts people’s civil liberties and criminalises them - I see this having more potential as a liberator than a restrictor. I used the term tagging in the title of my post deliberately as it seems to be what people are searching for.
- the view of it being introduced as a cost cutting exercise rather than an independence gaining exercise.
- the focus on the technology as a solution rather than the concern about whether it is an indication that the carer needs additional help and assistance - certainly, from my personal experience of having watched my Dad suffer, sometimes the level of carer support was a bit thin on the ground but he was reluctant to admit he wasn’t coping as he felt he was letting Mum down. He wasn’t. He was amazing.
I’ve spoken with friends over the past year or so about this as a concept, and I’m pleased to see someone starting to tackle the idea. This post is really just to pull together some references, and some personal experiences, and I’m writing it is as much for me to get my thoughts out as for anyone else to read.
As Mum’s dementia got worse, and she no longer really appreciated the difference between day and night, she would get up and wander around the house as and when she felt like it. Dad, sometimes, would fall asleep in his chair in the afternoon through sheer exhaustion. Mum would wander around the house, and on occasions neighbours did check up on Dad, as they hadn’t seen him for a few hours and Mum was obviously restless. For years our family home always had the front door key left in the front door lock. This changed when Mum started wandering, but occasionally Dad would forget, and Mum would get out (which I do know makes it seem like we were keeping her captive, but in some ways, we were). Once a week Mum would visit her friend who lived down the street. She’d been going to see this friend year after year, always at the same house. And then she forgot where she was going and got lost. Going 200 metres down the road. This resulted in her freedom being restricted as the risk was too great that we’d lose her.
There was also a time that I remember vividly. We’d gone to the British Museum and I was given the seemingly simple responsibility of escorting Mum to the toilet - I lost her in minutes. I was frantic, but fortunately found her before she left the building. I didn’t let her out of my sight again.
Dementia robs the sufferer of their independence as jobs and responsibilities are taken away from them. I guess it is the opposite to how it works with children, when you stretch them and encourage them to expand their knowledge. With dementia it is all too easy to do things for them, which, I guess (amateur psychology time here) reduces their capabilities and confidence.
A lot of the more recent dementia research and guidelines seem to be about encouraging the sufferer to do as much as possible, without exhausting them to keep them active for longer. Having a tracking device, where the data is available to the right people, should restore some independence, and stops the sufferer having to be so dependent on others - maybe allowing them to go to the local shop to get milk or bread or a newspaper. Or even have some time on their own. This can only be a good thing. Dad would have liked Mum to have been able to do more on her own. Both so he got a bit of time to himself (for the final few years Mum lived at home she went to a local centre several days a week to allow him some time to himself - I suspect he slept for much of this time) but also so that she regained a bit of confidence in herself, which would hopefully have helped her quite a bit, and would have taken away the feeling of uselessness and worthlessness that she often expressed to us. I would be interested in knowing more about the psychological benefits of giving people independence for longer - if anyone knows anywhere for me to find it, please leave me a comment.
But, any such device needs to be subtle - obvious to the right people but not exposing the vulnerabilities. I bought Mum an SOS Talisman bracelet. It wasn’t the prettiest thing in the world, but it would be recognisable to medical staff or the emergency services, and contained information about her illness and her details. She wore this much of the time, and was a very low-tech, and ugly, way around this identification issue.
Any device would also need to be robust. And always on the sufferer, which is a concern with the Mindme unit actually as it, obviously, needs charging. Mum wandered around the house at night, if she’d got out, she wouldn’t necessarily have been wearing a device. Also, Mum went through a stage of removing her rings, and watches. Necklaces survived, until the chain was snapped, so, for her, some form of necklace would have been the best solution. But as with everything else relating to dementia, different people have different symptoms and methods of dealing with things.
Key to the success and general acceptance, at least within the tech community, would be around it being well secured - allowing the right people to access the information, and not make them vulnerable.
Overall, I’m in favour of anything that extends a normal life for dementia sufferers and gives them more scope and independence. But I do think it has to be a choice, and not enforced. What works for one situation, won’t work for others.
There are so many opportunities through technology. We can make plants tell us to water them, and GPS track all manner of things - including our phones via various Find my Phone services, and ski clothing so that in case of an avalanche people can be found. I see no reason why we can’t use technology to support the more vulnerable members of our community in a secure and safe way. It needs focussed and careful thought and not over-reaction in the media.