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What I Wish People Knew About Dementia: From Someone Who Knows

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Thankfully, her disease has progressed slowly: Mitchell is still able to live independently in a village in East Yorkshire, with help from her daughters, Sarah and Gemma, who live close by.

I decided this is why I so often fall up and down my stairs at home, as they are carpeted with no clear edge. In response to the lack of awareness about dementia, she became a passionate advocate for raising awareness and showing that life can still be fulfilling after a diagnosis. This feels like a "must read' for anyone who knows someone with dementia or who has recently been diagnosed. I have taken her advice and created a room where I can feels calm and happy, with family photos, a warm blanket, and a cup of tea, especially on days when my legs don't want to work as they should.When Wendy was diagnosed with Dementia in July 2014, she had no idea where to start gathering information about her disease. I sobbed at this, because it was exactly how I felt and no-one else had ever really understood that until Wendy.

When I was given my diagnosis, the consultant had a sad look on her face, gave me a handshake and said, ‘Goodbye – there’s nothing we can do’.

Wendy Mitchell spent twenty years as a non-clinical team leader in the NHS before being diagnosed with young-onset dementia in July 2014 at the age of fifty-eight. What can a diseased brain tell us about being human, living our own lives better and helping those with dementia get the best from theirs? Alarms on Wendy’s iPad remind her to eat (she no longer feels hunger) and Alexa, the household computer, tells her to take her medication. She is doing her utmost to change the attitudes of clinicians and doctors, saying: “When I was diagnosed with dementia, I knew very little about it and I was given that sad look and I thought there was little I could do.

After immersing herself in the actual science of the disease, Wendy came to the conclusion that she had much less to be afraid of than she thought.When her adult daughters wear black clothes "all I see are heads walking round the room because there's a void where the black exists". But there are so many husbands, wives, sons and daughters who are thrown into the new role of ‘carer’, the weight and expectation of society imposed immediately on them with no preparation, no planning, no warnings handed out alongside this life-changing diagnosis. Now in her mid-sixties, she is holding on to her independence, still living alone in her village and taking regular country walks with her camera (in northern Europe, a third to half of those living with dementia live alone). So my advice is: even if it takes an hour for your relative with dementia to put on their coat, let them do it. Things just weren’t right, and then when I was out running, my legs and my brain weren’t talking to one another and I’d end up falling flat on my face.

Added to this, I am very grateful to Wendy Mitchell, who lives with dementia herself, for amending my preconceptions about the condition - now feel less fearful about the possibility of being there myself one day. However eight years later, she is still living independently at home in East Yorkshire, supported by her daughters and this indefatigable woman is an ambassador for the Alzheimer’s Society and has received doctorates from Bradford University and Hull University.Wendy Mitchell’s book, ‘What I Wish People Knew About Dementia,’ is a profound and enlightening journey through the complexities of living with dementia.

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