Tunstall’s Ali Rogan writes about her work with the Dementia-Friendly Technology task and finish group, which is soon to publish a Dementia-Friendly Technology Charter to help make technology a better enabler for people with dementia.
An invisible disease made manageable because of my wonderful wife
This week I spent a fascinating couple of hours with five gentlemen who live with dementia. Their group, which is coordinated by a fantastic support officer at the local Alzheimer’s Society office, adopted the name ‘Worthing Town Cryers’ because of their belief that there is a requirement to have a loud voice on the subject of dementia, so that everyone can understand more about this invisible disease directly from the people it affects.
What struck me immediately was that I could easily have been sitting drinking tea with my own father and uncles. Everyone was so friendly, making me feel fully at ease and had lots of stories to tell.
The reason I was there, was to ask about their views on technology and to discuss the work of the Dementia-Friendly Technology task and finish group set up by the Dementia-Friendly Communities Champion Group.
Some fascinating discussions ensued such as “I used to work a computer but I can’t even switch it on now” or “I struggle even with a basic phone. I’m confused by the buttons” and “we weren’t brought up with technology.”
As the discussion progressed, some of the gentlemen commented that they had a mobile phone, with one having his wife’s number on speed dial.
*George went on to proudly show me his iPhone which had an app ‘Find My Phone’. His son can check where he is at any time, as long as he had his phone with him, and that made George feel more confident.
*Fred who was diagnosed with fronto-temporal dementia 19 years ago, told me about a time he fell. He used to be a keen runner, a fact supported by his trendy track suit. This particular day, his wife had handed him a shopping bag from the boot of the car to carry into the house but as the driveway was on a slope, the weight of the bag caused Fred to be unbalanced and no matter what he did, he toppled over landing on his knee and ending up in a puddle of spilt milk. Fred was very clear about when you get dementia you don’t just have dementia – you also have a variety of physical ailments too, such as arthritis and blood pressure issues.
I asked Fred if he could think of something that would support him with his falling. His answer was not as daft as it sounded – laughing he said a Robot to help him get up. Fred agreed that maybe a fall detector would be of use.
When asked if they could see technology helping them with their everyday lives, the overwhelming answer was – why do we need it? I don’t go anywhere without my wife and I’m never left alone.
This is interesting on two fronts.
Firstly, they all have good and bad days, but the one constant in their lives is their wives or in one case, their mother. We discussed that there are thousands of people with dementia who just don’t have that constant support, who live alone and do so with the support of technology.
Secondly, we asked about all those wives out there, who in *John’s words “are dealing with you all the time when you’re awake with their infinite patience.” What happens when they need some time to themselves to relax, or if the patience runs out?
As a joint initiative between Alzheimer’s Society, providers, academics, leaders and users of assistive technology, the Dementia-Friendly Technology Charter aims to highlight the areas where technology can help, whether you are a professional, a carer or a person living with dementia.
*Names have been changed
Alison Rogan is External Affairs Director at Tunstall Healthcare and chair of the Dementia-friendly Technology task and finish group.
You can still get involved with the group via the Dementia-Friendly Technology LinkedIn group