Zoe and Koula raising wine glasses

Without a dementia diagnosis, Mum wouldn't have the support she needs

Koula spoke to a doctor after noticing problems with her memory, but it took several years for her to get a diagnosis of young-onset Alzheimer's disease. Her daughter Zoe explains the challenges they've faced and what a diagnosis means for them both.

I’ve told you that before. I’m not saying it again.

That was something Mum’s then, six-year-old grandson, said to her. She sort of laughed about it at the time. But it hurt. And it stuck.

It was the repetitive questioning that we remember coming first, and after this particular moment in 2016, Mum decided it was time to get tested for dementia.

Difficulty getting a diagnosis

Between 2016 and 2018, Mum had several tests, assessments, and an MRI. But over and over again, the doctors told us it was anxiety.

It’s true, Mum had always struggled with anxiety, alongside several other health challenges, but we knew it was more than that.

The whole process only made Mum more anxious, but because her early scores in the assessment were borderline, her Alzheimer’s was never acknowledged.

We knew that the earlier we received support, the more of Mum we would have left.

Two photographs of Koula and Zoe on family outings

Mum is Greek-Cypriot and moved to England at the age of 11. Her lifelong skill was baking. She was more than simply a home baker, it was her industry and she had it down to a fine art.

She’d have been deserving of a handshake on the Great British Bake-off, but she began baking less and less, saying she had ‘lost her mojo’.

Then she stopped altogether, and more symptoms crept up on her and us. 

At the end of March 2017, Mum nearly lost her life after needing serious stomach surgery. Luckily, she pulled through, but with that, came a dramatic downturn in her symptoms. Her memory and processing skills were much worse as a result, which is when we knew we needed further assessments.

We didn’t want her deterioration to escalate if measures could be put in place to support her.

Inconsistent support

In September 2018, mum was finally given the diagnosis of early onset Alzheimer's Disease.  

Our dementia advisers are here for you.

Despite expecting it, hearing the confirmation sent me cold and filled me with dread. But we needed to know. 

The wait to receive these words was frustrating, and what’s more, the support we received afterwards was inconsistent.

It felt like we were starting from scratch every time we spoke to someone new about Mum's condition. With the constant changes in staff along with a lack of resources due to the demands on an overstretched NHS, it was hard to receive the help we needed. Until we connected with Alzheimer's Society, that is. 

Zoe and Koula pose together in the park

Putting our needs first

It’s not easy to focus on the positives that have come from a diagnosis when you have fought so hard for support. But with the Alzheimer’s Society’s help we are reminded of these regularly. We have found people who take the time to know us and put our needs first.  

For over two years, Mum has attended Singing for the Brain sessions, where I have been provided with information and learnt techniques needed to help Mum stay happy and live well. We've also found out how we can access further support from the Alzheimer’s Society when we need it.  

This is all possible because of a diagnosis.

Mum knew the signs, but for so many others, common misconceptions around ageing are causing them to miss out on the support they desperately deserve.

With a growing diagnosis backlog caused by the pandemic, more people will experience the same frustrating, difficult wait that we did. 

Let’s give everybody access to a high-quality, accurate and timely dementia diagnosis

Too many people in too many places are missing out on the support that a dementia diagnosis can bring. Invite your MP to meet with my Mum and me at our Dementia Action Week event in parliament on May 17th.

Invite your MP to our event


I totally agree with all comments no one will help patients and carers just pass you on with a phone number and no one answers .l have written to my M P three times for different reasons and no reply or send a link do nothing Angela Eagle so no point inviting her it is disgusting how these people are treated it is an illness they need help
This is my second assessment, and I had a score of 87... if it was 84 and under it would have been classed as dementia. This is weird; My repetitiveness and, concentration, co- ordination, amount other things are poor. So my 2nd diagnosis was MCI...minor cognitive impairment! Which can lead to dementia... How can they justify these figures? And questions?
All the above experiences sound very familiar to me. My husband had little , if any help, from "professional dementia staff?" The government is happy to take nearly all your life savings leaving their loved ones to struggle. Nobody seems to care.
This mirrors my mum’s eventual diagnosis. Started 2010, Finally diagnosed 8 years later, just 2 years before she died. A drug was given to slow the progression but was too late to help really :’(
Please tell me what drug she was given. I am struggling with MCI and no on can give me a reason of the cause of my symptoms. I had an MRI W/Wo contrast recently and there were no signs of any problems. My mind is always extremely foggy. Feels like I am not totally awake. My reactions are slow and my balance is off; which causes falls. My vision and hearing are impaired. I sometimes have a hard time finding the right words or completing a thought.. very forgetful and get agitated easily.
I have Alzheimers, diagnosed in 2018 through a drug research study finding the Amyloid and Tau proteins after a Lumbar Puncture. I'm now on 2 other research studies and it may not be what people want to hear but it's unlikely a cure will be found in our lifetime (60+ ) buy WE can help in a positive way by getting involved with research studies. I have agreed to donate my Brain to be studied, more people should do the same!
now nearly 2 years in and still no diagnosis , just anxiety , I have no doubt my husband is suffering from some kind of early onset dementia, he has been off sick since May 2022 , and his money will come to a stop shortly . my daughter and I live now a nightmare not knowing what we will find in the house when we get back from work ! My husband is confused and does not understand what is happening which in turn is making him depressed ...... a vicious circle . I have come to the conclusion that there is no help and you just have to get on with it and take each day as it comes .

Hi Lisa, we're really sorry to hear this. It must be a very stressful time for you and your family. Please know you're not alone and that we're here for you.

We'd recommend calling our support line on 0333 150 3456, where you can speak to one of our trained dementia advisors. They will be able to listen, answer your questions and provide information and emotional support that's specific to your situation with your husband. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

Please do call our support line.

Alzheimer's Society web team

Sorry to hear about your husband and the dilemma you and your daughter are having. My advice is to encourage your husband to seek medical help. It is available and those professional people will give you all peace of mind by their encouragement and empathy.

I have frontal lobe dementia I can’t speak properly

Hi Sharon,

We're sorry to hear this. If you need dementia support, we're here for you.

We'd recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers. If you have a have a textphone or an adapted computer to help with speech or hearing difficulties, you can use Text Relay to call the support line on 18001 0300 222 1122. Our dementia advisers will listen to you and provide specific information, advice and support that's relevant to your situation.

You can find more details about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line

You might also benefit from joining our online community, Talking Point, where people affected by dementia share their experiences and offer advice and support. You can browse the conversations within the community or sign up for free: https://forum.alzheimers.org.uk

We hope this helps for now, Sharon.

Alzheimer's Society blog team


Please share with all.MP

Why are these comments still being wtitten by desperate carers
Nothing changes...no one listens untill its too late ...false promises ...phonecalls that never happen...
when our loved ones end up carehomes because the carers are totally unable to cope 24/7 ...or they have been in hospital looked after by staff that dont know the first thing about dementia patients come home from their hospital stay are nearly at a vegetive state..cant walk talk eat sleep..never any input from GP services...I never had one call in 4yrs from our GP to ask how we were coping....no medication checks...its a case of GET ON WITH IT...once loved ones go into care the carers are totally forgotten about untill the financial assessment is due ...then we get a phonecall just to say what they will be taking from us ...they never ask how the carer will manage financially no transission period financially..how they will pay bills buy food ...how they sleep at night...but they can.. tell you..if you cant manage many carers have to downsize more money for them to take ..more stress more heartache ...its a complete shambles from begining to end ....if you cant access help online you are left on your own ...honesty doesnt pay ....we work hard to save for retirement for it to be stolen from us thankgoodness my husband doesnt understand the circumstsnces I am left in now ...he would be horrified...bless him...a little kindness goes along way ...but it doesnt solve the problems facing carers every single day even when loved ones go into care we are still on our own ...

Hi Mary, This may help get in touch with soctal services ,and ask for a nhs continuing healthcare assessment,pages on the Internet that could help are company called Care to be different, and another site called luke Clements resources.. Hope this helps.
I care for my husband who has vascular dementia following a stroke,it is often forgotten that many dementia sufferers like my husband are immobile so getting out is difficult.We are both 79 and I am becoming less able to push him in a wheelchair. Care varies,we had good support while we lived in Wales,my husband was seen every 3 months by a psychogeriatrition and Social services were good. Following lockdown we moved to Scotland to be near my daughter,we waited 9 months to get any help from Social care. I was pleased that when our records were transferred from Wales I had a call from the GP surgery to say a dementia nurse would visit us,so I thought help and advice would be at hand.Not so ,she had come to get my husband to sign a DNR( do not rescusitate ) form,that was 18months ago and we've had no contact since.While I agree with the DNR it should never be the only care a dementia patient is offered. Like every other carer I live a day at a time safe in the knowledge that the NHS does not live up to the promise of care "from the cradle to grave". Dementia is the illness everyone dreads and yet the NHS denies it is an illness when it comes to giving care. Alzheimers Scotland have been helpful.

My mum was diagnosed with Alzheimer’s 10 years ago at her local Memory Clinic. We’ve never had any support. We fought hard to get carers to come in after paying privately for 8 years, but they’re not Alzheimer’s specific.

We're sorry to hear this, Julie.

We recommend calling our Dementia Connect support line on 0333 150 3456 to speak with one of our dementia advisers. They will listen to your situation and provide advice and support regarding your mum's care.

You can read more about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this helps for now,

Alzheimer's Society website team

My wife was diagnosed with dementia in 2015 and we have never received any help or support from anyone other than close family. She's 78 and I'm 77. As dementia is progressive and there is no cure and we were told early on that any medication available was useless we just get on with our lives as best we can. A daunting sheaf of printed material in a large brown envelope did arrive by post from the NHS but with the very limited "spare" time that I have available I haven't been able to read any of it, although I did fill in and return a form which was enclosed.

Thanks for getting in touch, Ken. We are sorry to hear you and your wife have had such little support

Please do call our Dementia Connect support line on 0333 150 3456 to speak with a dementia adviser. They will learn more about your situation to find out what information, advice and support could help you.

You can read more about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line

In the meantime, we do have a guide that may be of interest to you. You can download a digital (PDF) copy, or you can request a paper version in the post. It's called 'Caring for a person with dementia: A practical guide'. You can read more about it in this blog article: https://www.alzheimers.org.uk/blog/dementia-challenges-guide

We hope this is helpful for now, Ken.

Alzheimer's Society website team

I have to be honest I DO support your site for the sake of the future. However ALL this support you keep talking about was merely a few hand books which quite frankly I was too busy to read by the time my mum was diagnosed …. We ran and did sponsorships in aid of Alzheimer’s but apart from the books there was nothing!

Hello Kate,

Thank you so much for supporting the Society, and we're sorry to hear about the support you've received personally. I hope we’ll be able to provide you and you mum with some assistance.

Firstly, we'd recommend calling our Dementia Connect support line if you haven't already. One of our dementia advisors will listen to you and learn more about your situation, and they can then suggest relevant support and give advice. The Dementia Connect support line number is 0333 150 3456 and their opening hours are below should you need to ring them at any time. They will always be happy to listen. You can also leave a voicemail if need be and they will return your call.

We also have an online community called Dementia Talking Point. Dementia Talking Point is our online community for anyone affected by dementia. Ask questions, get information and share practical tips with people who understand. Whether you have dementia or know someone who does, we’re here for you:

For face to face support, you can browse our website for services local to you. Just enter a postcode in the Dementia Directory and it will show you a list of services which are available in the area. Each service has a phone number of the service provider who you can contact to find out more:

As you've mentioned, our website contains a wide range of publications and infromation that is designed to support and inform anyone that is affected by dementia and it is free. We also have printable, simple versions of our most popular information on dementia, called Helpsheets. They are one single page long, and each one covers a single topic. That is all available here: https://www.alzheimers.org.uk/get-support/publications-factsheets/full-…

I hope that is helpful for now, Kate. Please do call the support line for more tailored support from one of our Dementia Advisors.

Dementia Connect support line opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

Many thanks,

Alzheimer's Society web team

Koula is very lucky to have support. My wife was diagnosed with Alzheimer’s December 2019 and put on repeat medication for donepezil. We spoke with our local memory clinic February 2020 who said that they would refer to A S. but since then have not had any more information except a GP visit September 2021 .

Hello Rod,

Thanks for your comment, and sorry to hear you've not received any information since your GP visit.

Please call our Dementia Connect support line on 0333 150 3456, where you'll be connected to one of our trained dementia advisers. They will be able to learn more about your situation and find out what information, advice and support you might need.

You can read more about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this is helpful,

Alzheimer's Society website team

I agree. It is the family or charities such as Alzheimer’s.org who offer support. There is a lot less, indeed very little from the NHS

Koala is a lovely lady l.had the chance to go on holiday .with her quite a few years ago.
KoulLais a very exceptional lady
We had a great time
Koula also took walking trips all over surrey west London.