Dec 06, 2021

Don’t call us sufferers: Author with dementia calls out language used by doctors

Dementia author

Wendy Mitchell has put her experience of living with Alzheimer’s into a bestselling memoir. She conveys that the ‘defeatist’ language used in the medical community triggers the condition of many patients to deteriorate.

Formerly a NHS manager in the UK, Mitchell, 62 says, “I hate the word ‘suffer.’”

Speaking to the Daily Mail she says, “If someone tells you day after day that you’re suffering, you end up believing it.”

Mrs Mitchell continued, “It’s a bummer of a diagnosis, but if all you’re hearing is negative language, it just brings your mood down, you are instantly depressed.”

Diagnosed with early-onset Alzheimer’s seven years ago, Mrs Mitchell argues the language utilised by doctors can ‘make or break’ how a person is able to cope with their diagnosis.

The mother of two expresses that instead of saying there is ‘nothing they can do’, physicians could phrase it in many other ways, such as saying those with dementia will have to ‘adapt to a new way of living’.

Having previously written for The Mail, she reveals how she makes use of Post-It notes to assist in jogging her memory.

While at the Hays Festival in 2018, Mitchell said, “When you are diagnosed with dementia, it is seen as the end. My doctor delivered the diagnosis with: ‘We’re very sorry, there’s nothing that we can do.'”

“But to be given a sad look, a handshake and told nothing can be done leaves you deflated and thinking that it is the end.

“Instead, doctors should tell you to look at it as a new way of living a life that you will have to adapt to.

“Then at least you would leave the building with a little bit of hope – and it’s the hope that is missing at the moment.”

When she first started displaying symptoms, Mrs Mitchell was a healthy and fit NHS manager, however, she highlighted that a prominent position within the NHS is that a dementia diagnosis spells ‘the end’, and meant she was unable to retain her job after her diagnosis.

Remembering the response she received, she says, “The first question my manager asked was: ‘How long have you got?’

“The NHS concentrates on patients but don’t think about their employees who might be living with dementia.”

Mrs Mitchell has used her experience and skillset to help with the creation of a toolkit for NHS employers to alter the approach and thought patterns regarding people with the disease.

The author continued, “We all had talents the day we got a diagnosis of dementia, we don’t suddenly lose those talents overnight.”

With two grown-up daughters, Mitchell looks to the future, calling for a pivot in society and within the healthcare sector to a focus on how people can be ‘living’ with dementia instead of ‘suffering’ from it.

“In nursing homes, it’s often assumed that people with dementia can’t dress themselves. In fact, they can, they just need more time,” she explains. 

“But if nurses start dressing people with dementia every day, those people will soon forget how to dress themselves and it just disables them of that ability and causes the condition to deteriorate.” 

Living independently at her home in Yorkshire, UK, Mitchell shares she has a few techniques to ‘outwit’ dementia, one of which is having bought a vivid pink bicycle to help her easily spot and remember her bike.    

Her memoir, Somebody That I Used To Know, was released in January 2018. It provides first-hand insight into her journey of losing her memory to Alzheimer’s.

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