The reality of dementia and 'Dementia First Hand' virtual reality

It is estimated that 850,000 people in the UK have dementia of which, Alzheimer’s is the most common form and affects an estimated 520,000. For individuals with dementia, it is not just a loss of memory, but also perception, spatial awareness and facial recognition. It can be distressing for the individual, the relentless confusion, but as with many diseases there is an additional collateral impact on those caring for parents, partners, relatives and friends. Carers who have seen the before and struggle to comprehend the after. The lack of understanding can often lead to frustration, irritation and a guilt that lingers to taint the happier memories.

A personal experience of dementia in my family

The author as a boy, standing in a vegetable patch holding a bucket I have very fond memories of my grandad; Douglas, Doug – so odd to hear anyone call him that, but the daily walk to the high street to collect the paper would mean I’d hear it time and time again from the countless people we’d stop to say hello to. To me it remained odd that he could have an identity outside of ‘Grandad.’

Unlike other grandparents, he never spoke about the war, the only seeming reminder was a single black and white photograph of him in uniform, looking every bit the younger version of himself; even down to the haircut; short back and sides and a generous application of Brylcreem. He was always clean-shaven; a feat that fascinated me every time I saw the poorly named ‘safety razor’ in the pot next to the tuft of the upturned shaving brush. Why was he not permanently covered in cuts? 

He spoke with a ‘proper’ Sussex accent that whistled through his false teeth and made my sisters giggle. It was a nod to his farming roots; the life he might have led. Instead his garden became his farm and it was this that truly defined him to me. The back garden had no manicured lawn or colourful flowerbeds; this was proper gardening; vegetables on a semi-industrial scale; a vast back garden devoted entirely to growing things to eat; a soil rich from decades of ash from the coal fire in the front room, carried out by my grandad, shirt sleeves rolled up to his elbows as he dug it in with a fork, the wooden handle of which had been worn marble-smooth over time and use.

A garden spade stuck in the ground by a pile of leavesI remember his rapid decline. A heart attack that stalled his routine (or that’s how I’ve rationalised it since). It kept him indoors, no thinking ahead to the year-on-year, season-on-season planning, the rotation of the crops, the planting, the harvesting; the thing I think kept his brain ticking-over, active, working. 

I remember barely recognising this frail old man, the papery bruised skin, the patches of white whiskers on his face, so odd to see and the look of almost childlike fear that had replaced his smile. I remember the shift from amusement to irritation that I felt with having to repeat things over and over and the guilt I’ve felt since for feeling this way. I also remember my last conversation with him; a tearful ghost of his former self in the garden of his nursing home; the realisation that conversation he was having with me, he thought he was having with his son.

Gaining insight in to the lived experience of dementia through VR

To enable people to gain some level of insight in to the lived experience of a person with dementia, Galactig; a digital design agency based in North Wales, created 'Dementia First Hand' a Virtual Reality (VR) experience for the Oculus Rift (the headset used to access the experience). “Dementia First Hand” places the viewer in the place of a person with dementia. The experience is available in English and Welsh using both male and female narrating voices that give instructions for everyday tasks but also give a voice to the person thought various processes; the confusion or perceptual shifts as well as the persistent contrary thoughts. One element of the experience involves being in a kitchen, filling an electric kettle to make a cup of tea - a quick shift in time places you back in a house from the character's past, a metal kettle in their hand which is placed on the gas hob before the scene shifts back again to see the plastic electric kettle starting to burn and the smoke alarm sounding. The experience also has a scene in a café where a family member sits opposite discussing ‘you’ whilst the narrator narrates your thoughts and feelings. 

Tim McLachlan, Operations Director for the Alzheimer’s Society, in an interview with BBC Click, highlight; “… About half of people with dementia have said they feel isolated or lonely and a quarter feel that people don’t communicate with them because they’ve got dementia. This virtual reality experience helps build a bridge for actually having a conversation with somebody about their dementia.

Find out more

Read our Factsheet on Dementia and Computing

Watch our on-demand webinar about Dementia and Inclusive Digital Design

Alzheimer's diseases is the most common cause of dementia and September is World Alzheimer’s Month when awareness is raised and we challenge the stigma that surrounds dementia