Alex’s story: ‘I refuse to hide away and will defend my right to be recognised and treated with respect’

Alex Preston, 57 years old, has young onset Alzheimer's disease. He tells us how he wants to help people develop a better understanding of dementia.

My name is Alex Preston and I am 57 years old. I consider myself to be living well with young onset Alzheimer's disease.

Alex Preston

I haven’t always lived well because my journey to diagnosis was difficult and extremely stressful. I worked alone on a shift pattern when my symptoms began to present themselves. My colleagues started to complain about my work, but I wouldn’t accept I was making mistakes and believed there was a conspiracy against me. I just didn’t understand what was happening to me and it was a shock to see evidence of my mistakes.

I was referred to a mental health unit after my GP saw one of my work colleagues. That really made me feel low but it turned out to be the best thing in a strange kind of way. The consultant actually listened to my wife Susan and me, ordered an MRI scan and carried out my first memory test before referring me to the memory clinic. Even though I knew what the memory clinic did, my diagnosis still came as a massive shock. I didn’t want to believe it, and many tears were shed by Susan and me. However, it was also a relief because I finally had an answer.

My previous job involved a lot of calculations, yet now I struggle counting. This makes me feel vulnerable. I no longer use my cooker as I have burnt myself a few times and nearly set fire to the kitchen twice when I became distracted. I still socialise but I can find it confusing to be in a room full of people who are all taking at the same time. It makes me very tired so I don’t go out very often now.

One thing that helped me get out of a very dark place after my diagnosis was my music. I decided to write and record an album, which was something I’d never done before. Some people didn’t think I could write an album and some people told me not to be stupid. That just made me more determined to prove them wrong. And I did! When BBC Introducing started playing my song ‘Don’t Waste Time’ they didn’t realise it was written about living with Alzheimer’s.

My wife Susan really understands, she keeps me safe and encourages me to be active, allowing me the freedom to do whatever I want within reason, which enables me to enjoy life.

I refuse to hide away and will defend my right and the right of others living with dementia to be recognised and treated with respect. I used to get angry when people said silly and hurtful things to me. I now recognise this is due to people’s lack of knowledge and understanding of dementia.

So when the opportunity came along to become part of the new Dementia Friends video, I jumped at the chance. It’s my opportunity to help people develop a better understanding of the disease, and help them recognise that people with dementia still have feelings, still have dreams, still like to laugh and still need friendship.

I want people to treat and speak to me like they would anyone else and don't assume anything about me. If I'm confused or struggle, be patient with me. Don't talk about me as if I'm not there. And don’t stop me trying to do things.

Become a Dementia Friend

Learn more about dementia, how it affects a person and what actions you can take to help people affected by dementia in your community. Become a Dementia Friend now and see our video featuring Alex.

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52 comments

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This was a helpful and brave statement. Thank you Alex.

Thank you for reading

Alex

Thank you Alex for sharing your story. And letting us have an insight into your life, I'm sure that it will help people develop a better understanding of the disease.
Your so lucky to have a wonderful friend/wife in Susan who understands you, and takes care of you. God bless you both.

This is how everyone should be treated whatever their circumstance - with dignity and respect. There always traits of the person with this illness to be found no matter how far down the path they are.

I am getting bloodwork and a MRI this week..I am so afraid of this disease...I'm 65 yrs.old, and I have doing and saying inappropriate things..I don't know how I am going to live with this, if this is what it is....All I want to do is cry..

Lucy. I was 65 when I was diagnosed with Vascular Dementia. I hated it !!!
I hated the words the name of it....Dementia !
Over the last 3 months with Support from Alzheimers Society, Age Uk and friends ive settled into a different way of life. I find groups with others the same as you helps. Carers and nurses are all brilliant. But its talking to others in sam. Boat gives you ideas, confidence and courage. So dont be afraid of the unknown.......get your diagnosis and meet it head on. Youve always got help and support on tbis site.
Big Hugs
Dreane

Hello Lucy, thank you for your message. I am so sorry to hear that you are feeling afraid and upset. I can hear how worried you are that the changes you have experienced in what you do and say may be due to form of dementia. You mention that your bloodwork and MRI scan are being carried out this week. I am wondering if you are able to share how you feel with your GP, a friend or family member. It is understandable that you feel worried about having a diagnosis of dementia and how you will cope with this.

If you would feel comfortable speaking further about this on the phone you can speak to a Helpline Adviser on Tel: 0300 222 11 22. We can talk about what is happening for you now and what support is available.

Kind regards, Helpline Adviser.

I was diagnosed just before my 60th birthday with alzheimers. The only thing you can do is to stay positive and enjoy every day you can. Find a new interest, make new friends by joining a club, take as many holidays as you can and laugh as often as you can. I hope you will soon come to terms with the diagnosis and discover new things.

Oh Alex im sat here with tears in my eyes and hope in my heart. Your story really touched me. I was diagnosed with Vascular Dementia 3 months ago. I live alone am 65 and have been hiding away. Not anymore !!!!!!!! I'm going out, when they ask I will tell them whats wrong. Alex youve made me want to start living again...Thank you

Thank you Dreane, you enjoy every moment.

Alex

What a wonderful outlook, I wish my Dad was as brave.

I wasn't always so positive. Hopefully, your dad will find the strength.

Alex

Well done Alex! You and Susan are wonderful examples and an inspiration to others to continue to live and love life! God bless you both.

Thank you

Alex

Thank you Alex, our Mum is living with Dementia and it is nice to hear you describe how you feel, it helps me understand how our Mum feels. She is the world to us and we want to do the very best for her. Keep doing what you're doing, best wishes!!

Thank you

Alex

A very inspiring story Alex, I wish you all the best. Keep positive.
It's great that your wife is there for you. It must make all the difference
Lin

Thank you

Alex

Like your article so much Alex. Thanks. Its so inspirational- specially like what you say.... 'that people with dementia still have feelings, still have dreams, still like to laugh and still need friendship'. Lovely!

Thank you

Alex

Thank you all for your kind words on my blog.

After reading Alex's story I feel ashamed of myself the way I have treated my sister 55 as she has I think got this for the last year. I have laughed at her being forgetful and had a go at her as I couldn't of understood. How bad I feel now I feel like a nasty sister how could I she must be so frustrated inside God forgive me if I hadn't of looked up this website tonight trying to work out why she is like this as her doctor says she's fine and won't send her to the Memory Clinic but her work as a ward sister with my help has retired her at 55 as she was making mistakes and I didn't want her losing her important job and then lost her pension, so I insisted she retired early so paid her mortgage of I do her shopping as Vicky driving is bad now and sorting all her food cooking gardening etc etc but how unthoughtful I have been how so unthoughtful. Sorry Vicky I will make lots of changes reading Alex's story thank you so much. One ashamed sister Lorraine xxxx

Hi Lorraine, thanks for your comment, I'm sorry to hear about your sister, it sounds like you've both been having a hard time. It's good to hear that Alex's story has helped. You might also want to give our helpline a call, they can give you advice and support around memory issues and obtaining a diagnosis. You can reach them on 0300 222 11 22, or get more information at https://www.alzheimers.org.uk/helpline

Hi Lorraine, I am pleased I've been able to help you both.

Alex

Speak Mathew.

Such an uplifting story Alex. I totally agree with what you say , Alzheimers sufferers are still human beings and deserve to be treated with respect. I used to visit many care homes where the residents have no way of expressing their desire for dignity unless their past is understood and respected. I play piano and used to use my music to trigger many memories which gave them a chance to relive and talk about happy times they enjoyed in the past. Myself, having relocated from Somerset to
Wales have utmost difficulty trying to do similar things here. I am now of an age (87)which makes travelling difficult. I was hoping to do something in Llandovery which is hoping to become Alzheimer friendly but can't find any contact numbers
if any readers could help in this respect I would be so grateful. Good luck to you and your wife Alex. Keep on going on.

Thank you Sylvia. I hope someone can help you

Alex

Alex thank you so much for opening my eyes and sharing your feeling and thoughts. My mum has just been offered a memory test and a scan we are Waiting for the appointment, she hasn't felt right lately and I feel I'm losing my mum and best friend, I have tears now as this gives me the insight into how she must also be feeling and you are so totally right in all you say! It's a very difficult time and emotions are running high she's angry lots and then sad. I support her totally but sometimes feel alone myself, so with your words of wisdom I can ensure I encourage her to continue to reach for her dreams and do as much as she can and wants to do xxx

Thank you Trina.

Hi. I too have been diagnosed with early onset mild alzheimers in December 2016. For the first 2 weeks I felt very upset, even though it was me that pushed for testing 18mth before. But now I have come to terms with it I'm determined to make the most of the time I can use to make new memories and scrapbook them all down so I can look back at them later. I've had mixed responses to telling my friends and acquaintances. Most have been helpful, one or two have avoided speaking to me and when I've given them no choice, ie made sure I cross their path! Then they have talked to me like I'm a child or stupid. I want to shout that I'm no different than the last time we had a good conversation when they hadn't been told what I have.! The nicest persons comment was to my daughter, when my friend told her how upset she was to hear the news and she wondered what she could do to help, she came to the conclusion that the best way was to carry on just being a friend, and that is what she has been, she makes me laugh and feel normal. By the way I was 59 at diagnosis now 60, so still need to work as can't claim my pension yet but work has been brilliant so far and their supporting me as much as possible. I'm struggling to find other people with EOMA so was pleased to find your blog, I just hope that I can find it again! Best wishes on your Album.

Thank you Pamela, I'm happy to read your work is looking after you. Check with your local Alzheimer's Society to see if they have any young person groups (under 65) in your area. Also search Facebook as you may find some local groups on there.

Alex

Hi Alex, thanks for replying I will check out the site for local groups. But I'm not on Facebook, I don't know how to use it. My daughter in law is going to try and get me started on there, but it might be a little hard for her! I really want to start a blog about my journey with alzheimers, so I do need to get a bit more savvy with the social media world. I do find I soon get frustrated on the computer these days, even though I have always been one for not giving in with anything, (I taught myself how to use it by trial and error) I have done loads of things with different programmes ect. But like you with your album, if someone says you probably can't then you have to prove them wrong. So you may find me on Facebook soon! Bye for now, watch this space!

Pam that's the spirit. I love the way you are being positive. Once you have written your blog I would love to read it. Maybe, I will see you on Facebook.

Alex

OMG! It is certainly " There but for the grace of god" My mum had dementia and my son who has Parkinson's disiese knows that he will likely go the same road. Some of your stories have frightened me as I can relate to some behaviour but loverly to read such positive views.

Hello Irene, I am sorry some of my blog frightened you. Please remember I now live well with Alzheimer's because I've accepted my diagnosis and developed coping methods, which have stopped me worry about things I can't change. I focus on enjoying life with my wife and family and having fun. I am aware of the link between Parkinson's and dementia but that maybe it will never happen.

Alex

i was featured in the'litl help adveret a while ago,I continue to support Dementia Friends and have just returned from a conference as well as being involved in the planning of a conference in Liverpoolhaving support.life after my diognosis is just as busy and active as ever Gina

Hi Alex, my wife has early onset dementia but wont accept diagnosis, she dosent go out or go to any demntia cafe or even the mention of dementia she just ignores the people that try and help. I have tried everything but to no avail. Diagnosed alzheimer's and vascular dementia at 58 now 63.

Hi Jim, we're very sorry to hear this. If you'd like to speak to a member of our Helpline team to see if they can offer any guidance or support, please ring 0300 222 11 22. You can find out more about the Helpline here: www.alzheimers.org.uk/helpline. Thank you, we wish you and your wife all the best.

Hi Jim, I'm pam and it was a shock at first for me for a while after diagnosis. I didnt want anyone to know as I didn't want to be treated differently, and I was scared of the future. I've just turned 60 so was not expecting to be told I had alzheimers at 59! Although I knew something was wrong, it was like a kick in the teeth. Anyway now I'm enjoying watercolour painting and other crafts I've done in the past, although I am not ready to join a dementia cafe yet as the one's I've tried have only older people in much later stages than I am so far. I'm sure they will be useful one day but I want to try and be as normal as possible for as long as possible. I am hoping to get in touch with other people my age with mild alzheimers, I'm sure you will find something that suits your wife in time. Why don't you just take her out to places she's used to and not associated with dementia. Or at least join a carers group for yourself and chat to other people looking after family with dementia you may get some advice that way. I wish you all the best and hope your wife soon accepts her diagnosis.

Hi Alex
I am Pamelas daughter from above. I am very inspired and encouraged from your story. As my mum said before she has been diagnosed with alzhiemers since december just gone but been struggling well before this and in some ways its nice to have a name as to why she has struggled. Some people have ignored her and some have been great she does get people talking to her like shes a child. It does get me angry to think of this but some of the responses from her freinds and mine too have been wonderful and i feel we are both lucky to have such great friends. Its been a tough few months but we both seem to be getting our heads around it now but i know my mum is often freightened of the future and for good reason. I have told her i will fully support her through it all.
Although at first it seems a bad diagnosis i feel that she; like you Alex, can turn it in to a positive. We are both trying to think of lots of ways to make her happy like doing all her crafts she once used to enjoy so much and i have encouraged her and she teaches me which is great!
I wish you all the best for your music and album and will be looking out for it!
I hope carers like your wife and I are encouraged also from these storys above that dementia is certainly not the end and its about tapping into what you enjoy in life and although it may take a bit longer theres no reason why you cant do anything with the right support. After all seeing my mum happy is all i want.
I wish people would see past a diagnosis and that people with dementia are still themselves that they have always been.
And for this reason i am becoming a dementia champion to try to make our community a dementia friendly area.
I hope i can get her up and running on face book so she can get a sort of blog started too....
Watch this space.
God bless
Joanne x

Thank you Joanne for your kind words. I am pleased you are becoming a Dementia Champion. I am now a Dementia Champion so I'm sure your mum could do it also provided she feels confident. Maybe you could do it together. My album is called General Chaos 'One'

Alex

Oh i didnt realise she could do it too- i will ask her and look into it for her too! Thanks for the info.
God bless
Joanne
Will check out your album
Where do you buy it from?

Glad to be of help. It is available to download from iTunes. My website is GENERALCHAOSMUSIC.COM

I feel very heartened after reading the comments people have made after stating they have either 'early onset or general Alzheimer's'. My own mother (died a long time ago) developed this nasty thing and passed away in a general NHS old people's home! The family didn't have any 'money' so that's where she had to go. The place was awful and I dread ending up in that kind of place. Happily it appears much more help and guidance is now available and I find that comforting as I feel that I will develop it in due course.

Much love Alex.

Hi Alex

Thank you for your very positive message and I will be checking out your music.

Was with my dad today, he awoke this morning at 5am wondering the house very upset, he has lots of dreams, mostly all upsetting.....he woke my mum, who calmed him, reassured him he was safe.....once he had relaxed, he asked for me....I left work, we watched cricket together, charred, snoozed....this gave mum a chance to have a cuppa and sit smiling, safe in the thoughts that her life partner for over 60 yrs was engaged, and happy.......dads had dementia for nearly 4 yrs diagnosed, but showed signs in the run up to that......cruelly he also has luikemia, has a transfusion every Friday.......the reason I write this, and write this to you, .....is in regard to Facebook, and all that you share.....you got me interested in becoming a dementia friend, I also show me mum all the wonderful and fulfilling lives many lead....you directly inspired me to adapt my approach to my parents, and to make time, love and company each time I see them.......doing this is way out my normal comfort zone.....depression for me needed conquered and accepted.....and since the New Year, I am being treated in the first instance for low folic, and have a follow up later this month for more bloods, and a memory test, as in a strange twist of fate, I am 46, and the docs are exploring early onset dementia.......regardless of how it pans out......you gave me courage, empathy, and most importantly, a sense of fun.....sorry for the rambling message, but just needed to say thank you to you and yours.....from, me, my wife, my lad, my 4 sisters my brother and their families.....but most of all my parents......they are not alone, and everyday is another fun packed day.......xxxx......Matt

Hi Matthew, thank you so much for sharing your experiences with us. We're glad that Alex's story, among others, has provided you with the support, inspiration and fun you've described. It's also great to hear how our Dementia Friends programme has helped you with your own parents. Thanks again for you lovely message, we wish you and your family all the best.

We'll speak soon Mathew, just got back from the Alzheimer's conference.

Alex, what a fabulous, informative piece. I'm glad that you're carrying one of the 5 "pillars".. More to the person than Dementia... As a musician and performer, your story has touched me more than the many I have read. I find that music unfolds and unlocks emotions and memories that other memorabilia and sensory recall methods can do.. It must hold some comfort to actually be able to create, play, listen and enjoy your own work.., well done, good luck on your journey... Rob (Liverpool)

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