Lynda Cunliffe, a former computer analyst, found herself struggling to cope with her mother’s constant anxious phone calls, as dementia left her worried about everything from missed appointments and unpaid bills, to sending Christmas cards – despite regular reassurance that all was in order. A permanent message display, utilising an old computer set up in her mother’s house, proved an effective solution. You can read the story of how she developed this simple but ingenious system.
Mum had never used computers and I knew she would not cope with any kind of touchscreen technology or even a mouse or keyboard. I needed the system to be completely automated. It was therefore designed to display messages automatically and after a selected time to display family photographs as a screen saver. I set the photos to change every minute but mum didn’t like them swapping so often so we updated the system with an option to choose how often photographs change.
We placed the computer screen in her living room on a table. Initially mum was wary of having the computer in the room, worried she would break it when she dusted it. We tucked the keyboard and box away under the table out of the way and covered the screen on/off button with sticky tape. We reassured her that she could dust it just like the television screen and that did the trick.
I also knew that mum would want to turn off the computer at night – she was conditioned to always turn everything off at the plug to save electricity. We included the functionality of a blackout screen for night time so that at a selected time the screen would automatically go black giving the appearance of being completely switched off. The system used negligible electricity anyway but in this mode even less. We also put a ‘Don’t switch off’ message on the plug – paper messages still had their uses!
To provide a sense of control we used an inexpensive, luminous button. Mum could press the button if she wanted to manually swap between messages and photographs. Familiar with using buttons she did press it on occasion. We record the last button press time and display it in the Message Maintenance system so we knew mum was actively using the system.
To prompt mum to look at the messages, we included the option to flash the screen at preselected intervals and also when a new message was displayed. I rather foolishly, for my mum, included the ability to play music as a prompt to look at the messages, but as she needed a hearing aid (which she often took out in her flat) this option was a waste of time for her – but hopefully not for others.
It worked! She loved knowing the date as well as birthdays and appointments. Phone calls reduced significantly. She thought of the screen as another television screen. I included greetings from her grandchildren with their photograph alongside. As messages can be scheduled in advance and repeated as required, I could set the same greeting to display every few days which worked a treat. I also included messages to confirm she had completed something, for example “You have written and sent all of your Christmas cards” or “You have paid your telephone bill”.
A friend of mum’s saw the system and wanted to use it too. This made me think that maybe it could help others. We made sure that the method of entering messages was as straightforward as possible so that people with little computer experience could manage the message entry side. Our focus was to provide a flexible but easy to use and reliable system. For example if the internet loses its connection, the system continues to display existing messages and automatically reconnects and updates when the internet is available again.
I showed the system to a local Alzheimer’s group and they gave very positive feedback which was encouraging. They gave me some great suggestions – for example, provide the ability to change the colour on the Message Display screen as some people struggle with certain colour combinations. They also suggested it would be useful to know whether a task had been completed so we introduced the optional use of a Priority Message screen. This screen shows one message only and prompts the client to press the button (or mouse/keyboard) when they have completed the task e.g. Please take your medication. If the button is not pressed email notification is sent to the carer. In addition we included the option to speak messages if required.
Mum’s cancer returned and she lived with us for the last few months of her life. Though she was bedridden she still liked to see tellJoan. I displayed fewer messages for ‘Today only’, as she became more confused and unable to take in much information. We also included the option to space out the messages. Messages now tended to focus on greetings or what time a relative/friend would be visiting that day. I also displayed more photographs to relieve boredom – she no longer had the concentration or enthusiasm for television.
We have given considerable thought to how people can access the system to make it as intuitive as possible. Registration from the tellJoan website logs you straight into the Message Maintenance system and download of the Message Display system has been made as straightforward as possible (download and copy a zip file into a folder). Comprehensive help guides are also available from the Message Maintenance system.
Before dementia, mum was strong minded, active and independent. Even with dementia she bustled through life with the same determination and energy but with a good degree of chaos following in her wake. tellJoan couldn’t alleviate all of this but it did help her feel more in control, less confused and less anxious. I still had to organise day to day activities, foresee problems and too often manage the fallout when I failed, but tellJoan did help reduce the worry that mum might be setting off for a non-existent appointment somewhere and it certainly reduced the phone calls (and Christmas cards).
tellJoan is currently available for free from the website www.tellJoan.com. We would be delighted if people would use the system and hopefully give feedback on what they like or how it can be improved. to read more of the story please visit http://www.independentliving.co.uk/news/?q=node/1549.
Nearest tube – Elephant & Castle underground station (Northern and Bakerloo lines).
Nearest Railway Station – Elephant & Castle
Buses from Elephant and Castle – ask bus driver for Burgess Park. Bus numbers: 12, 171, 148, 176, 68, 484, 42, 40, 45