Living with young onset dementia: “I was given a sad look, a handshake and told there was nothing they could do.”
For World Alzheimer’s Month this year we spoke to best-selling author Wendy Mitchell, a woman from Yorkshire who has been narrating a positive, yet honest, account of her life with young onset dementia since she was diagnosed in 2014.
Wendy Mitchell was diagnosed with young onset dementia in 2014, at the age of just 58, and was still working as an NHS manager in Leeds at the time. She first started to write about dementia when she created her blog, Which me am I today? as a place to store her memories, but it soon became a source of interest and support for others who were affected by dementia.
Since her diagnosis, Wendy has taken an active role in dementia research, as well as increasing awareness of all forms of dementia, and is eager to show that there is a beginning to this condition, as well as a middle and an end. Along with journalist Anna Wharton, Wendy published a memoir called Somebody I Used to Know about her experience with young onset dementia and she now attends many events across the country to give talks and meet others who have been affected by Alzheimer’s disease or other memory conditions like dementia.
Wendy continues to adapt to an independent life with young onset dementia and to document her reality of what it is like to manage the condition day by day.
Symptoms and diagnosis of young onset dementia
Young onset dementia (also known as early onset dementia) is the term for a dementia diagnosis given to someone under the age of 65. Although everyone experiences dementia differently, below is a list of the most common symptoms of young onset dementia.
- Memory loss – forgetting recent events, dates, sense of time; losing items after forgetting where you’ve placed them
- Confusion – about how to carry out everyday tasks, about the time, dates and places
- Lack of concentration
- Mood or personality changes
- Finding it difficult to communicate clearly – speaking, expressing yourself, following a conversation
Wendy was diagnosed with young onset dementia at the age of 58 and although she experienced some of the early symptoms of the condition, and had worked in the NHS for around 20 years, the thought of dementia didn’t enter her mind until her diagnosis.
“I was renowned for having a brilliant memory; I didn’t forget but it started to let me down badly. I’d forget the names of people I’d worked with for years and words would be hard to find in meetings. I came out of my office one day and simply didn’t know where I was or who all the voices belonged to. When I was out running, I would fall over as my legs and brain suddenly weren’t in sync - I knew something was wrong but dementia never entered my head at that time.”
Despite trips to the doctors and numerous scans, more than a year went by between Wendy’s first symptoms and her eventual young onset dementia diagnosis. Wendy described the difficulty of staying positive after her diagnosis and how avoiding despondency is tough when you are given no practical support or encouragement at the diagnosis appointment.
“Like most people, I was devastated. I was given a sad look, a handshake and told there was nothing they could do. No positivity. Words and body language should never be underestimated by any healthcare professional. If they’d have said, “Yes, the diagnosis is that of young onset dementia and not something anyone would wish to have. But think of it as the start of a different way of living; a new way of adapting. I might not be able to do anything for you but there is still so much you CAN do, albeit differently and with support.”
Wendy often sees her diagnosis as a turning point. Addressing her “before” self in her memoir, she emphasises that the person she was before she was diagnosed is different to who she is now. Wendy keeps a positive outlook by seeing this as the beginning of a new, albeit very different, life. This life has certainly granted her plenty of opportunities and although there are many things she can’t do, due to the symptoms of her young onset dementia, there are still ways she can adapt and many things she CAN do.
“Despite the negativity that healthcare professionals and the media portray, I was determined it wasn’t the end. Everyone with dementia had talents before their diagnosis and we don’t suddenly lose all those talents overnight, we just need help and support to use those skills differently or continue using them.”
Family and support
When someone is diagnosed with dementia it doesn’t just affect their own life but the lives of their loved ones. Young onset dementia especially can change the dynamics of family relationships when someone who has previously supported younger generations, their children in particular, may start to need support themselves. As a single mum with two grown-up daughters, Wendy was concerned about the impact her diagnosis could have on her children, but she has always praised their courage and support over the past five years.
“My daughters are my rock and I wouldn’t be where I am today without their support. The 2 biggest things we’ve learnt is the importance of TIME and TALKING. It’s made us appreciate the smallest moments with one another and it’s taught us the importance of talking. How do those closest to you know what you’re struggling with if you don’t talk? And I’m still a mum, so it’s important for me to know what’s worrying them. It’s important to talk about the future too, otherwise they would be burdened with emotional and financial stress which I would never want.”
Information and support can also be found through charities, and is often available either online or locally. Alzheimer’s Research UK, Alzheimer’s Society and Dementia UK all offer a range of services for people living with dementia or Alzheimer’s disease, as well as their families. Helplines, online communities, admiral nurse services and the dementia friends scheme are just some of the examples of support offered by these charities and you can even discover local services to find support, activities and social groups near you.
Adapting to daily life
Five years after her young onset dementia diagnosis, Wendy still maintains her daily independence by adapting different areas of her home to make them more dementia friendly and by receiving support from technology and her family. In a video with Alzheimer’s Research UK Wendy describes how she had the doors removed to her kitchen and had the letter T placed on her toilet door to reduce confusion about which room is which. To help her to remember where her clothes and utensils were in her cupboards she would take pictures of their contents and stick them to the outside of the cupboard door. Wendy also uses some modern tech, namely Amazon’s Alexa, to help her control and understand some of her symptoms.
“Alexa is my new found friend. I trust her to tell me the day and time when I’m confused, to play me calming music when I feel anxious and to switch on the upstairs lights before I go upstairs. I use many apps to enable me to travel - the Train app can tell me which platform I’ll arrive at and which platform my connection will leave from, whether it’s delayed etc, all of which takes away stress. I play scrabble and solitaire in line every morning to see what state my brain is in that day. My daughters track me, which makes them feel safe when I’m travelling alone and if they feel safe, I feel safe.”
Whilst memory loss is the most recognised dementia symptom, others are often overlooked. Wendy tackles some of her other symptoms, such as sensory and cognitive confusion, with simple changes so that she can maintain her independence and keep doing some of the things she loves.
“My mantra is ‘There’s always a way’ - it’s just a matter of finding what works for you. I love walking in the Lake District and want to be like anyone else by wearing walking shoes, but they always come with shoes laces, which I can’t cope with now. So we found no tie shoes. Now I can slip them on and be like everyone else.
“Colour consideration is also very important for people with dementia. I don’t see white light switches on light coloured walls so I simply painted a dark blue border round them. There are many work arounds available in my book - Somebody I Used to Know.”
Living independently with dementia is a rare option that is not possible for many, but this choice was preferable to Wendy. She is still able to do many tasks independently and continues to adapt to different challenges that arise from her young onset dementia symptoms.
“I believe living alone is best for me. There’s no one else to move things around, because if you move them they no longer exist to me. I can repeat things all day long to myself and not annoy myself. I love simply sitting in silence in my own world, so I don’t have any guilt of letting a partner down, of being that burden that people describe.”
The book and the blog: writing and dementia
Wendy started her blog shortly after she was diagnosed with dementia. Since its origin, it has been a place where she can record her memories before they are lost and easily read them again at a later date. She told us a few more details about how the blog started and what it means to her.
“It was born in a cafe when I told my daughter I needed to record things electronically. She suggested I write a blog. So after she’d explained the meaning of a blog we set about creating the website. It was through her patience and support that I kept writing.
“Typing is an escape from my diagnosis as I can type as though young onset dementia has never entered my world. I can type words far quicker than I can think and speak them. I never imagined in my wildest dreams that anyone else would read my blog. For me, the blog is simply my memory, to record all the wonderful things I do that would be otherwise forgotten. That other people choose to read my ramblings is very humbling.”
Wendy often writes about the events, talks and interviews she attends, as well as the friendly faces she meets along the way – usually accompanied on the blog by a picture or selfie! She addresses her difficult days, particularly the dementia “fog” she experiences, and how it affects her. Although the blog still serves Wendy as a place to reserve her memories, it has gained followers who support Wendy’s journey and find encouragement in her words.
It was her blog that inspired the creation of her memoir, Somebody I Used to Know, which helped Wendy’s story reach a far wider audience. Her memoir begins with the experience of her first symptoms and takes you through her first few years with young onset dementia. Published by Bloomsbury in 2018, Wendy’s book still receives a lot of praise and has made it onto numerous book charts including the Sunday Times best seller list as well as being the Richard and Judy Book Club Pick of 2019.
A pioneer for research and awareness
Wendy has dedicated herself to sharing her own experiences and unique insights into young onset dementia, taking an active role in dementia research and meeting professionals, carers and family members of people living with dementia to share ideas, positive approaches and learn more about the condition. The publication of her memoir has also created opportunities in the literary sphere where she has been invited to attend literary festivals as a guest speaker around the UK.
“I have exciting events every week; I’m very lucky. My book has opened up new opportunities so I’m at the Cheltenham and Ilkley book Festivals in October as well as having the chance to fly out to Italy to speak to people about dementia. None of which would have happened if I hadn’t been diagnosed with young onset dementia. So I grab every opportunity, as I never know when it will be my last.”
From the start of her journey, being involved in, and raising awareness of, dementia research has been important for Wendy, as it was one of the first things she felt she could contribute to after her diagnosis. It has also enabled her to meet many different people, including healthcare professionals, carers and family of people living with dementia or Alzheimer’s disease, introducing her to new conversations and ideas.
“Research is the one thing that those who are diagnosing others can offer. They say there’s nothing they can do, but they can offer research. It’s actually a win-win situation; I benefit through getting involved too as it keeps my brain exposed to different conversations in different settings. The research itself might not be of benefit to everyone, but taking part is, and knowing that you might be helping future generations is also a very powerful motivation.”
Wendy’s determined, friendly and glass-half-full approach to her life with young onset dementia is admirable, especially in the face of such a life-altering and difficult disease. As well as her blog and memoir, Wendy has taken part in research, written articles for major papers and blogs, met with artists and journalists and been on talk shows and radio.
She is fighting the stigma of dementia by sharing her experiences, knowledge and positivity with the world, especially with others who are feeling the impact of a memory condition. This year she has also received two honorary doctorates in recognition of her efforts and contribution towards dementia awareness and research.
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- April 2nd 2019