Staff experience reality of living with autism and dementia

Primary care and community staff in Swansea Bay have experienced first-hand what life is like for people living with autism and dementia.

Staff from a wide range of roles, including GP and dental practices, optometrists, community services and the voluntary sector took part in immersive training experiences on specially adapted buses which simulate what life is like for those living with autism and dementia.

They have been developed by care training provider, Training 2 Care.

The sessions were funded by Swansea Bay’s eight Local Cluster Collaboratives (LCCs) – Afan, Bay Health, City Health, Cwmtawe, Llwchwr, Neath, Penderi and Upper Valleys.

Pictured: Members of staff after completing the dementia training.

Each cluster is made up of GP practices, dentists, opticians, community pharmacists, allied health professionals and health sciences, community nursing, medicines management, mental health services and the voluntary sector.

Together they work with local authorities to enhance the health and well-being of their local population.

The virtual autism bus saw participants wear glasses to distort their vision and spiky gloves, while also wearing headphones with loud noises played throughout the experience, to deprive them of their senses.

Once staff taking part in the training entered the dark interior of the tour bus, they were then given multiple tasks to complete within a few minutes, such as counting out money and writing the answer to a question on a piece of paper.

They were given instructions for the tasks while contending with flashing lights and the loud noises being played through their headphones.

The idea was to deprive them of their primary senses in order to gain an insight into what life can be like for those living with autism.

Angela Williams, an Autism Reality Experience trainer, said: “We come into contact every day with people with autism and there’s not really a lot of understanding about it.

“This training helps us to identify things we can put in place to help and support them going forwards.

“It helps to get the education out there to people.

“The more we know about it, the more compassionate people will be about it.

“It also helps people to think about how they can better support people with autism.”

Pictured: The training bus at Fforestfach Medical Centre.

People with autism may act in a different way to other people.

They can find it hard to communicate with others, understand how others think or feel and find things like bright lights or loud noises overwhelming, stressful or uncomfortable – among other things.

The experience was developed using the experiences and opinions of autistic people.

Following the session on board the bus, staff then took part in a debrief where they discussed their personal experiences and learned more about autism.

Beth Thomas, community partnership and involvement co-ordinator at Swansea Council, said: “We had to remember all of the tasks we were given, on top of the loud noises.

“There was an alarm clock ticking, a dripping tap and the sound of a hoover.

“It was really hard to try and remember and complete the tasks while we couldn’t see or feel anything.”

Rachel Roberts-Creber, communication development officer in the community learning disabilities team, added: “It offered a complete insight into what people experience.

“I didn’t realise what it must be like but it’s raised a lot of awareness.

“We could leave the experience at the end but feeling like that most of the time must be overwhelming.”

The dementia training offered a similar experience, with participants asked to wear glasses, thick gloves, headphones which played loud noises and wear spiky insoles in their shoes.

Each prop played a part in taking away the participants’ primary senses and distorting their surroundings. 

Inside the bus, they were greeted by flashing, disorientating, lights and were also told to complete everyday tasks, such as folding towels, stacking plates and buttoning up a shirt.

Dementia is not only about memory loss. It can also affect the way you speak, think, feel and behave.

It is a syndrome (a group of related symptoms) associated with an ongoing decline of brain function. There are many different causes of dementia, and many different types.

Many members of staff noted that the glasses took away their peripheral vision, so they were only able to see straight ahead.

While the thick gloves meant they struggled to identify and grip items and left many unable to button up a shirt as requested.

Anna Tippett, Penderi Local Cluster Collaborative’s business development and implementation manager, said: “It was as close as possible to living in a world with dementia and it was very powerful.

“The valuable information we learnt during the session was so important.

“The need to approach dementia patients from the front, to make sure you touch them gently to get their attention, to use different coloured cutlery and crockery to help improve their eating. There were so many practical things we learnt.

“It was the most memorable training I’ve ever attended and is so critical to improving the care we provide for patients with dementia.”

Pictured: Staff had to wear glasses, gloves and headphones as part of both training exercises.

Polly Gordon, voluntary development officer at Swansea Council for Voluntary Services, said: “It was disorientating and took you completely out of your comfort zone and out of control.

“I did have an awareness of dementia beforehand but the training offered a completely different experience.

“It is good to have the theory but the training showed us the reality.”

Andy Griffiths, the health board’s Head of Cluster Development and Planning, said: “Our eight LCCs pooled cluster funding to enable us to commission these reality experiences.

“I am extremely pleased that we have been able to offer this unique training experience to all LCC member staff groups.

“In doing so we have been able to upskill staff and ultimately improve the patient experience of those living with autism or dementia and their carers.

“Participation in the experience and the feedback afterwards has been amazing, with many commenting that this will improve their working practices.”