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 challenge the myths around dementia diagnosis

With dementia diagnosis rates at a five-year low, common misconceptions are causing many people to miss out on the support they need and deserve. Take our demystifying dementia quiz, then challenge your MP to do so too.

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15 comments

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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 SEND to ALL MP
THANKYOU.

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 ...

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:
https://forum.alzheimers.org.uk/

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:
https://www.alzheimers.org.uk/find-support-near-you

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.

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