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  • Writer's pictureStuart

Mindings Dementia Trial in Suffolk – Early findings

Mindings is currently being trialed in Suffolk with users living with dementia and their families. We’re having some remarkable results and we’d like to share some of our early findings.

Mindings wins CURA-B Competition

In November 2013 Mindings won the “CURA-B Innovation in Assistive Technology” competition. CURA-B is an initiative formed by ten partners from France, Belgium, the UK and the Netherlands to improve the wellbeing of seniors and people living with long-term conditions. As a result of the competition win, Suffolk Council have arranged for a trial of Mindings with their dementia team.

Over a series of blog posts we’ll report how the trial progresses, as it’s providing us with great insights into the lives of people living with the condition, and also how it affects their family, friends and the carers supporting them. The trial is also a great example of agile software development as we get feedback, add or tweak Mindings’ features, test again, and fine tune until we get it working optimally. We’ve so far had some very surprising success, and we’d like to share those stories. (NB Some names, images and details have been changed in this post for the sake of confidentiality and/or brevity).

Trial set up in Suffolk

The trial was arranged by ex-BT technologist Martin Owen from Suffolk County Council who project managed the CURA-B initiative. Martin brought in Independent Assistive Technology Consultant Lisa Cox to oversee the trial and introduce Mindings to families that she had existing relationships with in the Suffolk area.

First Trialist - "Paula"

Our first trialist, Paula, was a client of Lisa’s from the Ipswich area. She has mid-to-late stage dementia, and lives alone in the family home. Her daughter Carol lives nearby and visits most days. Paula is able to live independently as she can still cook and generally look after herself, but as an illustration of the extent of her memory impairment, she can go to the kitchen to get a visitor a cup of tea, come back to the living room without the tea, and not remember who the visitor is. She obsessively tidies her house and switches off electrical appliances so any assistive technology either gets switched off or packed away in unusual places in the house. She does know how to use the telephone, though, and can call her daughter up to fifteen times a day, anxious about things, or upset because her house is unfamiliar and she wants to “go home” (as with many people living with dementia, she is referring to the familiar home of her own childhood).

Carol wanted to use Mindings to enable the family to send her pictures and messages to help ease her Mum’s anxiety – by reminding her of who and where her family are – and sending her supportive messages and reminders.

We were confident that we could make a difference as Mindings has been successfully used in the past with users living with dementia (featured in a  previous blog post) and indeed our calendar was co-designed with a user whose mother has early-stage Alzheimer’s.

The initial installation of Mindings was successful. Paula wasn’t resistant to Mindings being set up in her home and daughter Carol was soon sending pictures to the screen from her iPhone using our new Mindings Sender App.

After a couple of days we had an email from Carol:

It’s been a stressful week trying to keep Mindings going. I think Mum is to far down the line to grasp the concept of the system. After encouragement she did press the button 2/3 times after speaking at length on the phone. The big problem is she won’t leave it plugged in! I thought if I changed the Sleep Mode to going off before she goes to bed it would help but it didn’t. At first she just unplugged it but then cleared everything away and hid it all. Took me some time to find all the parts, after she insisted she had never seen it. I’ve brought it all home to mine for safety. I’m very disappointed as Mindings is a fantastic idea and it could have been so good for her. She’s just past having anything unfamiliar in the house now. I wish she had Mindings a few years back before she deteriorated.

The challenge began. From our previous trial experience we had a variety of suggestions that could help. Here are a few we tried out successfully:

  • We created a more prominent GotIt! button – so instead of our subtle thumbs-up logo there’s the option of a more distinct red button with the call-to-action wording “Press to Confirm Receipt”.

  • To help Paula remember what Mindings is, we uploaded a notice into her Stream that would never be deleted.

  •  Carol put some stickers on the Mindings iPad and plugs. If forgetting that the device was her’s or not remembering that the iPad could be left switched on through the night (in Sleep Mode) then this might help

  • Using more explicit text in the pictures explaining what the pictures are and who is in them.

  • Writing fuller and more descriptive text messages, with an end call-to-action to remind Paula to press the GotIt! button and to build familiarity with that feature.

The results were immediate – with Paula not packing Mindings away because she didn’t recognise it as hers, and also more frequent pressing of the GotIt! button.

In all, Carol, Lisa and the Mindings team are delighted at such a great start to the trial. To take a person who has such advanced dementia and introduce this alien technology into their life is an achievement in itself, but to encourage the interaction (i.e. behaviour change) is, in our mind, very exciting and validates our contention that telecare products don’t all have to focus on monitoring, controlling and managing decline.

As our East of England clinical trial demonstrated Mindings can make people happier and give reassurance to their family in a kind and caring way. As we move forward with our trials we continue to keep that as our focus.

NB These ‘case studies’ are genuine feedback from users – often unsolicited. We use their own words where possible, but we edit their stories for brevity. We may change the names of users and be vague about their location for  privacy reasons. Pictures are genuine and supplied by users, but may be edited for privacy reasons or enhanced for clarity.

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