Debbie with her husband Steve

Debbie's story: 'Not enough people are aware of early onset dementia, never mind understand it'

At 50 years old, Debbie was told that she had mixed dementia. Following her diagnosis, the stigma surrounding dementia has had a significant impact on her life. But Debbie believes people’s attitudes towards people affected by dementia can be changed.

I’m Debbie, I’m 51 years old, and I live in Caerphilly in Wales. Married to Steve, we have three children and enjoy going on family holidays. We like entertaining friends, going to shows and having fun! 

Leading up to my 40th birthday, I found myself becoming increasingly stressed and tired.  I was working full-time in a secondary school and trying to look after my family. Steve was working long shifts as a police officer.  

I believe the stress and tiredness were partly why I had a series of TIAs (transient ischemic attacks, or ‘mini strokes’). It was around that time that I spent three weeks in hospital where I was prescribed statins and aspirin. 

Debbie with her husband Steve

Here's me and my husband Steve loving life. We enjoy nights out and weekends away at our caravan in West Wales

The first signs of dementia

In more recent years, I started to become increasingly tired and unable to think and process as I once had. People started to notice that I wasn't as organised and couldn't remember things that had once come so easily to me.

Many people said that I had lost my spark! 

Life outside work also became a challenge. I would get lost driving or walking to the local shop and I would get confused cooking basic meals.  

On one occasion, whilst shopping with my sister, I went into the changing room to try some clothes on. When I had finished, I left with only my top on and handbag on my shoulder - I had forgotten to put my trousers on! My family were becoming increasingly concerned. 

A surprising diagnosis 

One morning, I was in work and a colleague asked me a simple question. I became confused in the classroom and left. I was found by another colleague, walking about in the corridor, not knowing where I was or recognising who my colleague was. 

Steve was called, who immediately took me to the GP. I was referred as an urgent case to the memory clinic. I received a series of memory tests and scans within a matter of weeks. 

After several months of my family and I thinking of every possibility, I finally received a diagnosis. I was 50 years old and I was told that I had atypical primary progressive aphasia (PPA), or ‘mixed dementia’. 

Sadly, on my consultant’s advice, I had to retire from work. After 22 years doing a job that I loved, this was so difficult for me. We’re also in the process of downsizing to a smaller house, as I was becoming confused with there being so many rooms in our current home. 

Stigma in public

Following my diagnosis, stigma around dementia has had a significant impact on my life. I used to love shopping but nowadays I find it’s just too stressful and upsetting. 

Here are some instances when I have felt the impact of stigma: 

  • In a supermarket queue, I’ve been asked why it’s taking me so long to decide how many bags I need. A cashier once said, “If it takes you this long to decide how many bags you need, then God help you!" 
     
  • I’ve been asked if I was drunk when trying to order tickets, as I was slurring my words. 
     
  • I regularly forget my pin number which has resulted in people 'tutting' in the queue, and occasionally frustrated managers being called over. 
     
  • When I’ve told people that I have dementia, they have often thought it was a joke and have laughed and responded with, “Yes me too”, whilst laughing. 
     

People regularly say to me that I can't have dementia as I am too young. 
 

  • People have been offended and upset when I’ve forgotten their names, walked past them or confused them with someone else. 
     
  • I’ve been made to feel like a criminal when I have forgotten to pay for things in a shop. Even when I have gone back to pay once I have remembered or been reminded and explained that I have dementia. 
     
  • When I’ve asked staff to speak slowly or told them that I haven't understood something, they’ve become impatient. They have not always been understanding and haven't always listened. 
     
  • When speaking with reception at a GP appointment, I was told that I needed to check-in using their new computer system on the wall. I attempted to do so, but became very confused as it was new to me. The receptionist asked my daughter to take over. This was very frustrating for me as I wanted to check-in with the receptionist myself, as I always had done. I knew this was something I was capable of doing and I didn't want to lose this independence. 

How we can fight the stigma 

I honestly believe that we can make a difference to people’s attitudes towards those of us with dementia.

Many of us want to keep our independence for as long as we can, we want to enjoy life and not be worrying about what people are thinking of us.  

Simple changes to attitudes and understanding of the condition can make a huge difference to our day-to-day living. 

I don't feel that enough people are aware of early-onset dementia, never mind understand it. Some people are too quick to stereotype! 

I'm sure that there will come a time when we all need a little bit of help from others; for some of us this has just come earlier than expected. 

Debbie holding a Memory Walk T-shirt

I'm taking part in Memory Walk on 5 October 2019 at Bute Park, Cardiff

Learn more by becoming a Dementia Friend

Too many people affected by dementia feel that society fails to understand the condition they live with. Alzheimer's Society's Dementia Friends initiative helps by raising awareness and understanding, so that people living with dementia can continue to live the way they want.

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57 comments

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i have read your story.and it reminices with my husband who as just been diagnosed with early onset alzeihmers

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Dear Debbie,
Thank you for sharing your story with us. I haven't gotten a diagnosis but some of these things you shared are familiar to me. I can only hope the doctor is wrong and that it is just stress, depression and anxiety causing forgetfulness.

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Thank you all for your kindness and sharing your experiences with me. They've been invaluable. Some people have asked for the link for my Memory Walk on 5th October. I'm taking part in the walk with my daughters', Ffion and Carys along with other family and friends. The link is below:

https://www.justgiving.com/fundraising/mw437307

Many thanks, and love to all xx

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Thank you so much for sharing your story and bringing to light the everyday struggles that people with dementia face. My Dad was diagnosed a few years ago and it has been extremely difficult for him as well as our whole family. Normal tasks are difficult for him and I constantly worry about how other are treating him because he has problems remembering. It is comforting to know that there is a community that has similar struggles and are understanding in ways I only hoped.

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Much love to you X we are all in this together! Stay strong! We can make a change😘 big hugs x

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Hi Debbie,
Thanks for sharing this. Your story is really powerful and there are so many recognisable experiences from my own with family members who live with dementia, from the terrifyingly confusing episodes to just trying to maintain independence in a world that's just too busy to SEE people anymore (and has a really rubbish sterotyped image of who someone with Dementia 'is).
Sounds like you have fantastic family support (*waves at Ffion*), hope Caerphilly is on the memory cafe trail and that you're getting great, appropriate, professional help as well. Thanks again for writing this, just putting it out there will help so many people living with the same condition and have a great time on October 5th! (If you feel comfortable linking to your sponsorship page, would love to sponsor you directly) All the best xx

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Hi Debbie. Thanks for your story. I was diagnosed with early onset Alzheimer’s disease aged 58 following over 20 years of struggling to be taken seriously. Now, I am still strong and living a good life (62) and cope very well. I had, and still do get people saying I don’t have dementia. I just ignore the comment. I would like to answer, “you don’t look like your ignorant but you are”. 😂 Stay strong and live your life as you always have. I always manage to find a solution to any difficulty I find. That’s how I cope. I wish you all the best.

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I love your humour😂

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What an inspiration. My husband, Alex, was diagnosed with dementia frontal local when he was 66. He is now 68. What a man. He still has a great sense of humour and loves his Alzheimer's Centre which he goes to 3 times a week. Keep up the good work Anne Morrison

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Much love to you both x

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My mother has it Debbie and one time i had her in the hairdressers and she was very confused, the hair dresser was looking at us odd so i explained my mam has dementia, her answer was "ah we get a few of them in here" how i didn't box her god only knows,, people really do need to know more and understand dementia,, take care and head high Debbie,💜💜💜💜💜

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I know my daughter's, would definately relate to your experience and frustration! Much love to you and your mam😘

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Thank you for telling your story Debbie, I understand how difficult it must be for you. My husband was diagnosed with early onset frontal lobe dementia 9 years ago. While he’s in total denial, I have to deal with people’s attitudes. We had to attend our ER department when he had suffered a minor injury, I had to explain that he had dementia at every step of the process only to be doubted & questioned! Five years ago we were back at the hospital when he suffered a severe stroke, again the doctors reaction to being told he had dementia were “Really, how do you know?” or “Who told you that?” As if I would make up something like that!! If that’s what happens with professionals what hope do we have with the general public? Where I live they are working on initiatives to create dementia friendly communities. My love goes out to you & your family, you sound so happy & positive.

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Hi Bethan, your experiences, sound so familiar. It's so sad that even medical professionals get it wrong x this is why we need to try not to stereotype. I can look well, make up on, hair done, but in the next breath not know who or where I am. I admit it is difficult for people to understand, but hopefully, by sharing our stories and educating, we can help x good luck and love to you both xxx

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Debbie, and Ffion.
We live in North Wales with husband diagnosed with mixed when he was 50. We still go out, have a good time, and LOVE our motorhome. Only downside to that is that he no longer drives. The best we can tel you is to be involved and do as much as you can whilst you can. We really believe it has helped to slow down his progression (use it or lose it, and all that). If you ever want to talk ask for our number with the alzheimer’s society Cymru engagement officer, Jane Platt. She will be able to give you our details. There is so much ‘stuff’ you can access here in Wales - bus pass +1, blue badge as just very quick examples.
Knowledge is power, and the more you inform yourself, the more strength you will have in your armoury. Best wishes, Jayne and Chris Roberts, N Wales

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Thanks so much Jayne x I love your positivity😘❤️

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I agree with your daughter Debbie do what you can for as long as you can till the time comes for them to take over for you,hope you get the support you need in the future I'm sure you will with such a supporting family.x gillian

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♥️♥️♥️♥️

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Thank you for sharing Debbie 💚

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Debbie, I’m so sorry that you receive so much impatience from other people. I am interested that the Alzheimer’s society has published your story, as in many ways it is a criticism of them. They need to step up the campaigns to increase awareness in every way possible. I hope they will meet that challenge.
A friend has early-onset Alzheimer’s and has received similar treatment, notably from the girl assessing his PIP payments who apparently has greater medical knowledge than the Harley Street doctor who made the diagnosis. She has passed him as fit to work, despite the fact he can no longer remember how to find his house or make a cup of tea. Good to know we are in safe hands.

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Hi Caroline, I understand your friends awful experiences with Pip. After working all my life, I found it very difficult, to even accept, that I should apply for ESA, pip and a bus pass! The endless explaining and form filling, just added to my distress and confusion! There has to be an easier way to apply!!!!
As for the Alzeimers, publishing my story, I am truly thankful, how better to make people aware than to have a person who has a diagnosis, share there experiences. I am more than happy to help any campaign, that promotes a change in negative attitudes towards dementia and educating those who are unaware of such hidden disabilities x

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Hi Debbie
Haven’t seen you for a while but when I do I’ll make the effort to speak to you and I don’t care if you don’t recognise me, I’m sure if I mention our rugby days with the boys we’ll have a giggle. Big hug and love to you and your family. You're an inspiration 💕💕 xx

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Thank you for such lovely words x please say hello, if you see me xx

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Debbie...
My heart goes out to you,I had no idea of your diagnosis. I’ve known you and Steve since our childhood but lost touch many years ago. What an awful traumatic time for all of you, my love to you all always...
Mary xx

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❤️❤️❤️

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