Virtual tour by training2care offers a window into the world of dementia

HAVING a dad who was diagnosed with early-onset Alzheimer’s in his 50s, I thought I had a reasonable understanding of the disease and how it affects those who have it.

But having taken part in a virtual dementia tour led by training2care at Mornington Court care home in New Milton, I realised I actually knew very little about the fears and limitations faced by those with the condition.

The tour offered a “window into the world of dementia” and, as I made my way to the care home, I felt apprehensive – I was very aware the brutal reality of that world could stir up some buried emotions.

My dad is not alone. There are currently 22,380 people living with dementia in Hampshire and the Isle of Wight, with someone developing it every three minutes.

The number nationally is set to hit over 1-million by 2025, with many millions more carers, partners, families and friends affected.

Mick Bailey was to be leading the tour on a “mobile dementia simulator” on board a bus parked up outside Mornington Court. The training2care team had been invited in to coach its staff, opening up the opportunity to members of the public too.

From the outset, I detected a hostility from Mike that I put down to me being a journalist but which instantly put me on the back foot.

I later discovered, however, it was part of the experience to demonstrate the negative attitudes often encountered by people with dementia.

With two other participants, I was shown onto the bus and ordered to put on paraphernalia including gloves, glasses blocking my peripheral vision, extremely uncomfortable shoe inserts and headphones.

Robbed of our senses, we were given five tasks and told not to leave the bus under any circumstances.

My anxiety rose as the three of us were led by the arm into a dark room with flashing lights.

Through our headphones came the disorientating noises of people talking, sirens, doors slamming and other strange sounds, all at distressingly high volume.

I was beginning to feel panic as we stood for what felt like an eternity, not daring to move or speak. I felt a very real fear of what was to come – the sensation that comes with knowing you’re about to fail.

Not being able to see either side of me added to my deep sense of vulnerability. Our field of vision naturally narrows with age, but I later learned that for a person living with dementia, this process goes into overdrive.

The noises in my ears were adding to my sense of confusion, drowning out the first three rounds of instructions we were later told we had completely missed.

Doors slamming sounded like bombs going off. Chatter and laughter – usually a comforting background noise – took on a menacing quality.

People with dementia are hugely distracted by background noises; a normal brain can easily filter out a passing motorist or voices in the street, but they can cause extreme reactions in those with the disease: anger, confusion, yelling or pacing.

I watched as Mick approached another group member and said something to her before she began rifling through items on a side table.

I knew I too would be approached but I jumped when Mike loomed into view suddenly from the side and said something into my ear which I could not properly understand.

I tried to tell Mick I hadn’t heard but he did not respond; I felt glued to the spot and at a distinct disadvantage in a now-alien world.

I felt a sudden urge to cry, knowing this feeling of bewilderment is how my dad must have felt – was still feeling – along with all the other millions of people across the world living with dementia.

When Mick next approached he was in full view in front of me. He gently touched my arm to signify his presence and told me to find the black glasses.

Having located them I felt decidedly pleased with myself, but that pride vanished when Mick promptly snatched the glasses from me – leaving me with the strong feeling of being infantilised and dejected.

Mick later told us that those with dementia take great comfort holding toys or objects they can cuddle or grasp (my dad’s is a toy octopus).

He has often seen carers snatch these things away.

When the experience was finally over, Mick stressed dementia was about so much more than just memory loss and confusion.

“People think they understand what it’s like to live with dementia, but no one really knows until they’ve walked in their shoes,” he said.

He asked why none of us had switched the light on in the room; we said we didn’t think we were allowed.

“That need for permission is what those with dementia need to do anything, even go to the toilet,” Mick said.

More became clear: the shoe inserts demonstrated how dementia can cause peripheral neuropathy – damage to nerves in the extremities, such as the hands and feet, resulting in numbness, pain and loss of balance and co-ordination.

In that small, dark room I had experienced frightening and uncomfortable emotions: for just 10 minutes I had felt small, powerless and unsafe.

Gone were all those things I take for granted: autonomy, to see and think clearly, the belief that others would treat me with kindness and respect.

But I was able to leave with my senses returned and be treated, once again, the way people should be treated.

I’ve taken away a deeper understanding and a new-found empathy for those with dementia, but also the painful realisation that had I known what I do now, I would have been better with my dad.

• For more information, visit www.training2care.com or call 01376 573999.