Dementia Support Line
Real stories
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.
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.
Talking to your GP
If you (or someone close to you) are worried that your symptoms may be dementia, the first thing to do is to contact your GP.
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.
Keeping my independence
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 around dementia
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.
I'm taking part in Memory Walk on 5 October 2019 at Bute Park, Cardiff
How to get a dementia diagnosis
Read about the typical steps involved in getting a diagnosis, including what might happen if you are referred to a specialist.
Carol
saysHi 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.
Deborah Williams
saysI love your humour😂
Anne Morrison
saysWhat 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
Deborah Williams
saysMuch love to you both x
Selene
saysMy 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,💜💜💜💜💜
Deborah Williams
saysI know my daughter's, would definately relate to your experience and frustration! Much love to you and your mam😘
Betsan Rowlands
saysThank 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.
Deborah Williams
saysHi 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
Jayne Goodrick
saysDebbie, 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
Deborah Williams
saysThanks so much Jayne x I love your positivity😘❤️
Gillian tanner
saysI 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
Deborah Williams
says♥️♥️♥️♥️
Sarah Smith
saysThank you for sharing Debbie 💚
Caroline Mills
saysDebbie, 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.
Deborah Williams
saysHi 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
Jayne Palmer
saysHi 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
Deborah Williams
saysThank you for such lovely words x please say hello, if you see me xx
Mary (Wilkes) Howells
saysDebbie...
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
Deborah Williams
says❤️❤️❤️
Arlene king
saysThanks for sharing your story I lost my sister to Alzheimer’s she was only 51 reading your story brought back a lot of things that you are going through living with Alzheimer’s, it was hard to watch my sister going through her life with this disease and losing her after 3yrs after she got diagnosed take care x❤️
Arlene king
saysThanks for sharing your story I lost my sister 3yrs ago she had Alzheimer’s so hard to watch my sister going through life with Alzheimer’s reading your story brought it all back about what was happening in her life before she was diagnosed she was only 51x❤️
Deborah Williams
saysSo sorry for your loss.
I too have a very close relationship with my sister, and I see her pain, when when she sees me confused or when I'm misunderstood by others. My sister often feels angry and frustrated at how, on occasions, people have reacted to my confusion. It's often, just as difficult for our families to deal with, as it is for us. We just have to enjoy the good times x much love to you xxx
Judith Cook
saysHi Debbie you are an inspiration before and after your diagnosis. We have worked with you in the school environment and you made a massive impression on us. We think of you with admiration and are proud to call you a friend. Thank you for sharing your story. Dementia is a taboo subject that effects many of us my dad included. With love judi and Len. X
Deborah Williams
saysThank you so much Judith, you are so kind. Your support means so much! Love to you all xxx
Melanie
saysMom had vascular dementia later life for last few years around 85
When any medical team came to see her she would answer all there questions with not much confusion the min they left she would ask where was she & made look like nothing was wrong as time went by the confusion would get much more till eventually all our family noticed the change slowly but sure it was getting much worse this disease can be most upsetting for the person & their family friends
Would like wish you all love with your life if you only have one life take what you can fr it & live never worry about others
We lived life to full together & glad have so much to laugh & remember my mom by xx❤
Deborah Williams
says♥️♥️♥️
Heather Hill
saysIt was brave of you your story will help people like yourself and others to understand it's a cruel world out there. I hope that your life will be good. God Bless you
Deborah Williams
saysThank you for such kind words, Heather xxx