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Living with Dementia: A Q&A with Wendy Mitchell

Posted on 16th February 2018 by Martha Greengrass

The first memoir ever written by someone living with dementia, Somebody I Used to Know is an extraordinary, informative and life-affirming read. In an exclusive interview, author Wendy Mitchell discusses the changes needed in the medical profession and society at large to help those living with dementia and how she has learned to live a life changed but not consumed by her diagnosis.

Reading Somebody I Used to Know it struck me how much of our personality is made up of roles we play, be it daughter, mother, employee or friend. How much of your learning to live with dementia has been about finding who you are without those roles to define you?

I suppose most of my learning has been about discovering how resilient and strong I am at facing this head-on. We all so often spend our time craving to be like other people instead of celebrating our own strengths. 

Having dementia can be a lonely existence and I wasn’t prepared to live alone with dementia for my only company. Perhaps that’s why this once-private person is now willing to go so public. It means I have so many others willing me to outwit the beast and virtually hugging me when I’m having a bad day.

You’re very clear about defining yourself as a person living with dementia, not someone defined by the condition. How important do you think it is that people don’t make the mistake of confusing the diagnosis with the person?

So important. We are so much more than a diagnosis. As I’m always saying, we all had talents before a diagnosis, we don’t suddenly lose all those talents overnight. Dementia may force us into living a different life but there is still so much living to be done and still much we CAN do. I never dwell on what dementia has stripped away from me, instead I concentrate on those things I CAN still do, albeit sometimes differently.

The book sometimes appears to be a discussion between the version of you who is living with dementia and what you call the ‘old you’. What do you think the past version of Wendy would make of the person you are today?

I like to think of the ‘old me’ as still walking with me and helping me. I often talk to my old self and ask her what she would have done in a situation. 

I hope she would be proud to see that I haven’t given in to dementia and let it win, just as the old me never gave in.

I was struck by how little continuous help was available to you after your diagnosis. How do you think the medical profession could change to provide better support for people to live full and active lives with dementia?
I think the medical profession would do well to concentrate on social prescription instead of medical prescription. The medical model just isn’t geared up for a dementia diagnosis – it’s an opt out. What we need is emotional, financial, and peer support post diagnosis. There’s nothing more comforting than hearing someone in a similar position say “oh yes, that happened to me’ – it reduces the isolation.

No one should feel alone with dementia and yet many do. There are pockets of brilliant medical support around the country but it’s a huge postcode lottery. Charities are commissioned to provide services but not always by the right people with the right knowledge. That’s why my peer support group in York will soon be starting to run our own course for those diagnosed or recently diagnosed with dementia. We want to see if this could become a better option. It will be evaluated as we run it to provide evidence for the medical profession, so we’ll see.
Have you been surprised and comforted by the enduring resilience of emotional connections, particularly with those people you love and care about most?

My daughters are the two most important people in the world to me and we’ve been on a tough journey, but the one thing we’ve found that gets us through is talking. If people don’t talk, how can you know how to help, or who is struggling? It works both ways and I’m still a mum first and foremost, so I always try to be aware when my daughters aren’t coping well. 

You use technology often in your daily life to help to navigate areas of your life from communication to keeping track of your diary. Would you like to see more resource dedicated to looking at the ways in which technology can be used and developed to help people with dementia? Are there any developments you’ve found particularly (perhaps surprisingly) beneficial?
I’m continually learning. There are many projects in the pipeline regarding technology. People in the future will expect to rely on technology, so to not develop now wouldn’t make sense.

I suppose the most useful yet simple tool we use on our phones is called ‘Find Friends’. It helps my daughters to simply and easily see where I am, and then check that I’m supposed to be there - ha! It means they don’t worry as much as if we didn’t have that simple app. One venue gave me a wonderful talking video map which took me on a virtual walk from the station to the venue. It was perfect and stopped me from getting lost. More of these options would be wonderful but people should remember that we need the instructions in reverse as well!
Why do you think we’ve established a position where people with dementia are often isolated and, to some extent, kept hidden from the rest of society? Would you agree that it’s essential that we becoming better at making our society more open, flexible and inclusive to people with dementia?
I think this is simply due to fear. People often don’t seek a diagnosis because of the label that will be attached. We have a complex brain disease so why be ashamed or embarrassed? Talking about it openly removes the fear. Not talking about something that’s feared doesn’t make it magically disappear.

Communities could help by accepting that people with dementia are going to exist in their community, and not segregating us. I don’t always want to take part in a group activity solely for people with dementia, I’d also like to join the general community in groups. I don’t want a dementia café, I want to meet my friends with dementia in Cafe Nero or somewhere regular. We’re often segregated as a matter of course instead of thinking that there might be other options.
You write very movingly about how your friends and daughters have become ‘guardians of the past’, holding on to memories you can no longer keep. How much of a comfort is it to you to be able to pass these memories on, to know that they will continue to exist even when you can no longer remember them?
Very comforting. That’s why I have my memory room, so that they know what and where is important to me, and it’s also why I have two memory boxes – one pre dementia and one post dementia.

Again, it comes down to talking. Often in care homes and hospitals,  staff refer to those with dementia as having ‘challenging behaviour’ when in fact it is more likely to be ‘distressed behaviour’. If they took the time to find out about the person they would see there is a reason for how they’re behaving. For example, one dementia patient in hospital used to insist on sitting behind the nurses station, and he was seen as a nuisance. But then they discovered that he used to be a nurse, and was re-living the time when he was a nurse, so it all made sense.
Some of the most affecting and poignant moments of the book are your descriptions of the close relationship between you and your daughters. To what extent do you think it’s important that in recognising the effects of dementia, people consider the impact on friends and loved ones and the support they also need? If you could pass on just one lasting piece of advice to your daughters, what would it be?

When a person gets a diagnosis of dementia, so too do their family and friends. We all need education, support and advice. My daughters and I had to work all this out for ourselves and we’re still continually learning.

My one piece of advice? 

Don’t dwell on the future. We have no control over how this will all end so why dwell on something over which we have no control? Instead let’s enjoy today and live in the moment - and if today is a bad day, well tomorrow may be better. I’ll always love my daughters no matter whether I know who is stood before me or not.

If could give a message to someone receiving a diagnosis of dementia today, what would it be? 

Don’t fear dementia. It’s not the end but the beginning of a different life; a life of adapting.  Yes it’s a bummer of a diagnosis, but if you think of it in this way, it will be a much calmer and more manageable journey.

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