This month, we had the incredible opportunity to interview an individual living with dementia. Wendy Mitchell is a 62 years young lady from Yorkshire, United Kingdom. Wendy was diagnosed with young-onset dementia in July 2014 and worked at England's National Health Service until her retirement in 2015. Wendy is a strong patient advocate, and has published about her experiences with dementia in her Sunday Times Best Seller book titled "Somebody I Used to Know", as well as on her personal blog. She is here with us today to share some insight on her journey with young-onset dementia.
1. Can you tell us about your diagnosis of dementia and your initial reaction to the diagnosis?
Like many people at the time, I was ignorant. I thought dementia was age related so couldn’t possibly be that. However hindsight is a wonderful thing and I soon realised dementia isn’t age related as many of my dementia pals, playmates as I call them, are in their 30’s, 40’s, 50’s and beyond. My initial reaction was a belief it was the end because no one told me any different. The diagnosis process is very clinical and focuses on what we can no longer do. My Consultant gave me a hand shake, a sad look and I was told ‘There’s nothing we can do’. No words of encouragement, no indication of how life will change, no positivity. The psychological effect of words and body language should never be underestimated by any healthcare professional. The way they deliver any news or simply talk about it can make or break that person.
When they say there’s nothing they can do, We go away despondent and believing it to be the end…..I did as do many others. …how different my consultation could have been if she had turned that wound and said:
“Yes, the diagnosis is that of Young onset dementia and not something anything would wish to have. But think of it as the start of a different way of living; a way of adapting; of trying to outwit the challenges dementia will throw at you. I might not be able to do anything for you but there is still so much you CAN do, albeit differently and with support.”
How different my mindset would then have been on leaving her office with those different words ringing in my ears. Sending me away with a hope of a life instead of despair.
When people hear the word ‘dementia’ they immediately skip to the end stages, forgetting there’s a beginning, a middle long before the end with so much life still to be lived. I know I did.
2. How has life been different since your diagnosis? What activities have you found to be helpful for managing dementia?
Well life has been very different. I used to be a very private person but now my girls say I’ve become this gregarious alien that I quite like. So I’m more outgoing, a more sociable person than I ever was. Any activity that you enjoy is good for dementia.
My village community know me as the camera lady first and the person with dementia second. Everyday I walk around my village taking photos of our beautiful neighbourhood and then share them each evening on out village Facebook page on line. People get immense joy from looking at my photos, but also it gives me a reason to exercise each day. I don’t worry about getting lost or forgetting where I am because I know that anyone I meet will show me back to my house. So communities can be a great help to each other. One family had kept their fathers diagnosis a secret and didn’t want to share it with others in case they were suddenly ignored. But then the father started getting lost on his daily walks so they revealed to the village that he had dementia. Now everyone looks out for him and helps him to find his way home again if he gets lost. No one laughs or ignores, people accept each other and now he and his family feel safe again.
I’d never used technology before dementia, I didn’t even know what an iPad, smart phone or apps were, but I have 2 very patient daughters who sit for hours with me repeating how to do something until I can do it on my own. Now technology enables me to remain independent. Alexa is wonderful. She reminds me daily to do things, take medication etc, she can confirm the day and time when I become disorientated, she switches the upstairs lights on to reduce the risk of me falling in the dark and she can even put the kettle on for my cuppa tea.
3. What have you learned through your journey with dementia?
I soon learnt there is a life. Adventures still to be had. Dementia has taught me to live in the moment. We go about our life wishing for the weekend, wishing for the next holiday, wishing for next year but we miss what we have now. The beauty around us, magic moments that occur every single day if only we’d take the trouble to stop and look.
I’ve also learnt never to give up on yourself, many others will do that for you. Believe in yourself. After all who would have thought I could have written a Sunday Times best seller since being diagnosed? My consultant certainly didn’t believe it was possible.
4. I see that you are a strong advocate in the community for individuals with dementia and are passionate about raising awareness about dementia. Can you tell us about what inspired you to become an advocate? How can we as a society better support individuals like yourself and others with dementia?
I was so shocked at the lack of awareness and understanding both in the community but also in the healthcare world that I now put my head above the parapet and speak out for the reality of dementia. Yes we have a bummer of a diagnosis and some days are really rubbish, but we all had talents before a diagnosis of dementia we don’t suddenly lose those talents overnight when we receive a diagnosis. I speak out for those no longer able to speak for themselves. Even in the later stages, people still have emotions, still need a hand to be held and know someone loves them. There are so many other ways of communicating with people other than the human voice, you just have to find a way that works for that person. My mantra is ‘There’s always a way'.
5. Have you experienced any stigma surrounding dementia that you would like to dispel?
The main stigma is this belief that we suddenly need wrapping in cotton wool. For the kindest of reasons people start to do things for us. If we don’t do something day after day, we forget and then you’re stuck with doing it for us.
My daughters use to do loads of things for me in the beginning – for the kindest of reasons – they’d help me with my coat on for example – but I could still put on my own coat. If I suddenly stopped and allowed them to do it, within a few weeks I’d forget how to put on my own coat. I told them that if they continued they’d have to come to my house every time I wanted to go out – they stopped immediately.
But also because of societies attitude, people believe people with dementia CAN'T do so much. But there’s still so much we CAN do. We just need the support and patience of those around us to help us continue to do the things we love. I’ve done a Firewalk, a Glider flight and a Skydive, all since dementia so positive risk taking is for everyone, including those of us living with dementia.
What my book, Somebody I Used to Know, shows, is how you must never give up on yourself, others around you will do that.
We would like to sincerely thank Wendy for taking the time to share with us her journey with early-onset dementia. Wendy, you are absolutely inspirational to all of us and we thank you for sharing your story and passion for advocacy with us. Wendy also runs a blog called "Which me am I today? One person's experience of living with dementia", and can be found at https://whichmeamitoday.wordpress.com
