What l learned on the Dementia Bus – Diana Stephenson

My family is currently 3 years post formal diagnosis of my mother’s vascular dementia with Alzheimer’s.

It’s tough. As of the last few months, she has no short-term memory. We share moments of joy – typically out walking the dogs – but within minutes she has forgotten we’ve left the house.

Mum is often a angry with me, particularly if I’m trying to give her some help around the house and we have started down the path of her not recognising me, or mistaking me for someone else.

Last month I was invited by Home Instead to take part in the Dementia Bus Experience; an immersive journey into the world of dementia and the only experience of its kind in existence.

I didn’t know what to expect. I guess I thought it would be quite practical to give me a flavour of what a person can and can’t do. But it went far deeper than that and was an extremely emotional and thought-provoking experience.

On the day, I entered the converted bus (it’s more of a van) with 2 other people. Our trainer, Marc, explained that he would be giving us 5 tasks to complete.

He then gave us bulky gloves to wear, glasses that blurred your vision and mimicked tunnel vision and, the most troublesome – a set of headphones playing a cacophony of noise.

Saddled with this debilitating kit, we were then escorted into the main body of the experience. Dimly lit, with flashing lights, our trainer, Marc, stood in front of us and gave us the 5 tasks.

My first reaction was wanting to burst into tears – the noise, not being able to see properly and having a man standing over me, barking instructions was at once distressing and disturbing. I could only catch snippets of what he was asking me to do (stack some plates, fold some clothes and find a particular item were just some of them). The sense of panic and frustration was immense.

I remember stacking some plastic plates – there was a piece of paper on the wall that I thought had instructions on it but I couldn’t read it. So I just kept picking things up and putting them down. Perhaps in the vain hope that I was doing what was expected of me?

Marc then stood me in front of a cabinet and again gave me an instruction. No idea. But he then repeated it and I could hear what he said ‘Find a paper and pen and draw a picture of your family – and write everyone’s name on the picture’. So, I now knew what I was supposed to be doing but, with blurred and tunnel vision, struggled to find the pen and paper. But I did get a drawing of stick people done! I did write everyone’s names down but don’t think any of them were in the right place – they may not have even been on the paper I found.

It was exhausting.

So here are my 6 takeaways

Sensory overload is debilitating – this is immense. Voices in the head but many conversations and thoughts overlaid; external noises are amplified.

When Marc gave me the instructions on the 5 tasks, he appeared to be waving his arms around frantically and I thought he was shouting at me. I later learned that he was speaking in a normal tone and using the type of everyday arm movements we all make when speaking.

This explains why my mother finds it difficult to follow even the simplest of instructions.

The overload is distracting, exhausting and confusing.

TAKEAWAY: Be more patient.

Hearing amplification is not a good thing – my mother has stopped wearing her hearing aids. Our trainer advised us that this is common. The hearing aids amplify noise – if someone is already experiencing sensory overload, why would they want further amplification?

TAKEAWAY: Book a hearing test and explore getting the amplification modified.

Why can’t mum see things? We may be looking for the TV remote or her glasses. They are next to her on a table by her side, but when I tell her they are there, she can’t see them – which I then find frustrating.

TAKEAWAY: Her vision is impaired, particularly her peripheral vision. I need to help her to find things and reposition the table in front of her.

Mood swings are understandable – mum can be jolly one minute but shortly after she’s annoyed with me, typically because I’m trying to help her with something (like sorting out some washing).

TAKEAWAY: Understand that in her world she is still as capable as she was 5 years ago.

Slow Down – Mum recently described me as a ‘whirling dervish’ and she says she finds me exhausting. I now understand this reaction better. I would often arrive at the house with a list of things that need doing in my head – check her post, look for an item she has telephoned me about that’s gone missing, empty the kitchen bin.

TAKEWAY: With everything that she’s experiencing, me getting on with jobs in the house is just too much. I need to arrive, sit down and have a chat and then get on with the tasks in between times. Also, focus on the jobs that are really important – the rest can wait!

The importance of touch The ability to cut through the noise in order to achieve clear communication is vital. I described earlier how, during the experience, I was able to hear Marc the trainer at one point when he as asking me to draw a picture. He asked me afterwards if I had any idea why – and it came to me. He’d put his hand on my shoulder and, it enabled me to hear him. At the time it felt as if he’d removed my headphones – but he told me he hadn’t. The hand on the shoulder (interestingly, near my brain) interrupted all the ‘noise’ and alerted me that someone was communicating – and that’s why I heard the instruction.

TAKEWAY: Never underestimate the power of human touch.

Home Instead provide care for my mother and it’s been a blessing. She has a small team of Care Professionals who now know her really well. They make sure that she gets out an about and is able to take part in local groups. They also take care of some of the housework and things like her washing which takes a lot off my mind. It means that when I am with mum I can be her daughter and we can spend time together.

Mum is adamant that she wants to remain at home and Home Instead make this possible.

Basildon Dementia Action Alliance