Breaking the stigma of a dementia diagnosis

When I speak to people about dementia, their minds are often set on a particular image of the disease, characterised by old age, failing memory, our lack of ability and ‘the end’. Of course, all of these are part of dementia, but those are just the negatives. No wonder there’s still so much stigma against a diagnosis when this is all that we hear.

What I’d like you to consider is everything else – the life still to be lived, relationships and how dementia is about so much more than memory. 

Seven years ago I was diagnosed with Young Onset Dementia at the age of 58. Back then I was given a handshake, a sad look and told there was nothing they, the clinicians, could do. After all, there is no cure. But after a month of deep depression, I suddenly looked at myself and my daughters and thought, I’m not ready to give up. 

The clinicians were focused on their role. After all, there is no magic tablet that can rid my ailing brain of this disease. However, if only they’d focused on me, if only they’d told me that although there’s nothing they could do, there’s still much life I can live, albeit differently and with support. How different my mindset would have been on leaving that consulting room, leaving it with hope instead of despair. 

Here are some of the things I wish people would know about dementia.

Peer support 

I was never a ‘group person’ pre-dementia. But once diagnosed, I wanted to hear it from the horse’s mouth. I found, and am still a member of, my wonderful support group in York. We call ourselves Minds and Voices. When I first walked into that room and saw people like me, laughing, voicing their opinions, sharing stories, I finally felt at home. I call them my second family, as do many others across the country. Our paths would never have crossed in any other circumstances. That one word, ‘dementia’, has brought us together.  

During lockdown, we were obviously unable to meet face to face, but each of us eventually learned the art of Zooming. Many a laugh has been had on these calls when talking about ‘Alexa’. Alexa helps us in many ways, but if we’re on Zoom and someone says her name it can cause all sorts of riotous laughter, as all our machines suddenly come to life and start asking what we want. Mine even started playing Beethoven’s Fifth one time, much to the delight of everyone present. 

Seven years later and I still travel the long journey once a month, simply to be me, Wendy, ‘the chair monitor’ as I’m known. 

Relationships 

These inevitably change once a diagnosis of dementia is given. However, very little consideration is given to this at diagnosis. When I received my diagnosis, so did my wonderful daughters, yet there was little help for us, let alone for us as a family. 

One thing my daughters and I discovered was the power of talking. How else would I have known that they worried about me travelling up and down the country on my own? How else would we have found a solution to the worry – for them to track me on their phones, making them feel more comfortable and, in turn, making me feel more comfortable that they could help if I got in a pickle.

Whenever I have a problem, ‘Team Mitchell’ go into action to find a solution. My mantra is “there’s always a way”.

Independence 

Another thing my daughters have said is that they had to learn to let go of their fear, the fear of ‘what if’ they allowed me to do something. The natural reaction is to start doing things for us for the kindest of reasons.

People want to wrap us in cotton wool, protect us. But that kindness can become our downfall. Because if we don’t do something day after day, we forget. We’ve then lost that skill and have to rely on someone being around all the time. Isn’t it much better to allow us to take an hour to put on our coat? After all, you then have an hour to do other things, and we still have our self-respect intact. 

Dementia strips away so much, that to hold on to skills and abilities makes us feel useful and human again. I’ve always said that living alone is a blessing, which may sound odd to some. But living alone means I have to find a way. It also means there’s no one around to move things. Because when things are moved out of place, to me it’s like they no longer exist. Consistency and routine are vital. 

More than memory

I can only touch on the other aspects of dementia that no one warns you about. So many of our senses are affected as well. The smells of burning that don’t exist. The sounds of gunshots when all is silent. My sensitivity to noise. Our tastebuds changing, making once-loved food taste like cardboard. But sometimes, just once in a while, dementia provides an unexpected gift.  

One bright day, I was pottering inside, shuffling from one room to another with a cup of tea in my hand. Suddenly, through the glass of the double doors, something caught my eye. It took a while for the silhouette to make a recognisable figure, but it was then I saw the unmistakable shape of him; a man standing in the middle of the lawn – my father. 

My father had been dead over 20 years, yet dementia had given me the gift of his company once more.  

I hope you will have gathered that my book will reveal far more about dementia than it simply being about memory. Dementia may be terminal, but so is life. Enjoy today because today is the only certainty we have and as I always say, if today is a bad day, tomorrow may be better. 

What I Wish People Knew About Dementia by Wendy Mitchell is out now (Bloomsbury, £14.99)

This article is taken from The Big Issue magazine. If you cannot reach local your vendor, you can still click HERE to subscribe to The Big Issue today or give a gift subscription to a friend or family member. You can also purchase one-off issues from The Big Issue Shop or The Big Issue app, available now from the App Store or Google Play.