Experiencing Dementia from the Inside

June 3, 2020

When we are caring for people living with dementia, we try our best to understand what they might be going through. As we get to know them, we start to recognise their emotions, we learn how they respond to certain situations, triggers that make them react in a certain way. We do all that we can to create a caring environment conducive to physical and mental wellbeing, but we can never fully understand what it’s like to walk in the shoes of someone living with dementia. The fear and frustration of living with physical, cognitive and sensory challenges they don’t understand in a frightening and confusing world. It can be difficult and frustrating to care for someone you don’t understand. How can we meet their needs and provide the right environment to promote their wellbeing and enhance their quality of life?

Although not all people living with dementia are elderly, many people with dementia also have age-related impairments such as arthritis, eyesight problems and hearing loss. Thankfully, there are now a range of resources available to help us to experience and understand some of what the person is going through. An insight into the physical, cognitive and sensory challenges people with dementia face on a daily basis.

During my OT training, one of the first practical lessons we undertook was to head out onto the streets of Sheffield while experiencing varying degrees of sensory deprivation. I wore pinhole goggles that blocked my peripheral vision, and after about 50 yards I wanted to rip them off. I was immensely frustrated and felt vulnerable and scared. My “carer” (a fellow student) also found the responsibility of anticipating my needs frustrating, being my “eyes” when crossing the road and assisting me to purchase some sweets. This was just one tiny glimpse into the confusing world of sensory challenges, but that experience has remained with me forever.

Nowadays, there are much more sophisticated ways to experience some of these challenges to gain a greater understanding and empathy. There are CD and MP3 tracks listened to with headphones to replicate the hearing challenges and confusion someone with dementia may experience. Sensory deprivation gloves give an insight into the loss of dexterity and sense of touch and grip that may occur in dementia, and there are even full suits that allow users to experience co-ordination difficulties, loss of strength and mobility and visual and hearing challenges.

A Walk Through Dementia’ from Alzheimer’s Research UK is a free virtual reality app, giving insight into 3 everyday symptoms that pose challenges for those living with dementia. Download it onto your phone or watch on YouTube.

Dementia from the Inside’ from SCIE is a film based on the true experiences of people living with dementia. It aims to give carers an insight into how it feels to find yourself in a world that seems familiar but doesn’t make sense.

The more we understand, the greater empathy we have with the challenges that people with dementia face. Empathy helps us to reach out to the person and let them know that we care. It helps us to adapt our approach and create a positive environment that enhances their quality of life and in turn gives us greater job satisfaction.

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Katie Farrar

Occupational Therapist

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