AAC and my Mum

My mother has Alzheimers. She has had it for several years but this year she has deteriorated rapidly. She has developed complex communication needs as this has happened. She struggles to find words and often can't finish a sentence as she forgets where her sentence is going.  She can no longer tell all the funny stories that she used to enjoy sharing.  She still has fabulous social skills - but most communication exchanges with her now are very brief and general.

My mother is an amazing lady. She was an educator for most of my life - from a primary school teacher to a school principal. She is, quite simply, my hero.  She retired because of her Alzheimers and, unfortunately, it has been the overarching theme of her retirement.

Earlier this year my father and I had to make the decision that she needed more care than we could provide. As a consequence, she has moved to a nursing home within walking distance of us.

When she moved to the nursing home my Speech Pathologist side made sure I ticked off the preparations for her communication. Pulling on my AAC background and all the information I had heard about Alzheimers and AAC - and my experiences working in care settings - I put together the chat book below.

My intention was that her carers could learn about my Mum, her interests and family. That they could come to know her as the full person she is and not just the person they see today.

However, there's that saying from Robert Burns about "the best laid plans of mice and men often go awry" and this was definitely one of those occasions. My Mum loved the chat book. I printed three copies - one for her room, one for the common room (as I thought it might give them a common topic to chat about) and one for her file. My mother promptly hid both copies she had access to. They were hers, she liked looking at them but no-one else was allowed to see them, not even me!

I tried turning the chat album into a talking book using Pictello on an iPad. My mother had always been a big tech fan (she was ICT co-ordinator at her school for several years, superintending the roll out of Apple IIes, then IIGS' and then early Macs) and I wondered if this might be an option.  Unfortunately while she enjoyed it, she also wanted to keep that version to herself and never used it for its intended purpose.

As a few months passed, I wondered if the problem was that it was difficult for her to have conversations about the pages with others.

I decided to trial another option. I turned the Chat Book above into a series of Visual Scene Displays.  I used the recently released app from Tobii DynaVox, Snap Scene.

I imported each of the photos from the Chat Book, without the text, first of all. I then added hot spots to turn them into Visual Scene Displays.  The app is incredibly easy to use and very stable - since I already had the photos curated it only took me minutes to make an album.

Once I had made the album, I took the iPad (locked into Snap Scene with Guided Access) down to trial with my Mum.

Once again, she loved it.  But this time she actually used it to chat with people. She had conversations of three and four turns with people, including myself.  She reminisced and chatted even if briefly.

A week later she moves between hiding it and using it - but it's a better outcome than the previous options at this stage.  The technology isn't ideal as the nursing home struggles to manage it and charge it - but I can work on that now that I have a shot at something that works.

My next step is going to be to record some of her favourite stories with accompanying photos and see if those are successful too. And I hope that I've found an option that continues to provide some communication options that she enjoys using - and which support her to communicate to others the amazing lady she is.

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