Dementia Support Line
Real stories
Being persistent with the GP about my dementia symptoms has benefitted me
Gina recognised something was wrong but it was a challenge to make the GP listen to her concerns. Committed to finding an answer, Gina persisted. She eventually received a diagnosis of vascular dementia, which helps her to continue living a good quality life.
Everything started when I had a stroke.
I was a single mum of four, who returned to education as a mature student and became a primary school teacher. From there, I moved into a school for children with behavioural problems – I loved being able to help them. Then I became a deputy headteacher.
At the time of the stroke, I was an acting headteacher, covering for several colleagues who were off sick.
I recovered well from the stroke, but developed epilepsy. Despite this diagnosis, I carried on with life, including keeping my licence to drive my car.
Gina noticed changes and wanted the GP to listen to her concerns.
Explaining to the GP something's wrong
Shortly after, I began to notice a series of changes. I became depressed. I had falls. I got mixed up. I struggled with speaking and missed words in sentences. I even stopped reading because that became too hard, and I had trouble with numbers.
All of this was followed by a mini-stroke. I went to see my GP, but they said they couldn’t find anything wrong with me.
I kept repeating “I’m not right” to my doctor to try to get them to listen. You know how you feel inside.
I will admit, I have somewhat of a stubborn or persistent personality, so I kept going to see the GP until I eventually got an appointment with a consultant.
In the film below, Gina shares the importance of talking to your GP when you know something's not right:
Not long after my appointment with the consultant, I received a letter. Eventually, I received a diagnosis of vascular dementia.
Coming to terms with a dementia diagnosis
I was split. 50% of me knew what it was going to say, and 50% was in shock.
Oh my goodness, it couldn’t be dementia?
My world emptied out. It seemed so unfair. Had I not had a hard enough life with the two strokes? I had such a successful career, something that was mine that meant a lot to me because I come from a real working-class home.
After some time, I said to myself “You’re still here. There are people who are worse off.”
Gina was committed to finding an answer and says she's relieved to now have her diagnosis.
Getting support from Alzheimer’s Society
A little while after my diagnosis, Alzheimer’s Society phoned. My consultant had told them about me, and their Dementia Connect service got in touch. I was a bit shocked but appreciated their support.
Someone from Alzheimer's Society came around to visit. It was their Dementia Connect team who put me in touch with a memory choir, which then led to another choir.
Choir has given me so much joy!
The songs have so much variety and there are many that I remember from my youth. They're not so much 'pop' songs, but tracks I remember from the working men’s clubs I tended. I worked in them when I was in my 20s - the memories are so uplifting and positive.
Through the choir, I’ve met people who are different from me, which I enjoy. Together we’ve been out on trips – I've made some great friends.
It comes to something when you have to get dementia to find a social life!
What's next?
This autumn, I’m really excited to be joining Alzheimer’s Society at the Labour Party’s annual conference in Liverpool.
I’ll be talking to Members of Parliament from across the country and telling them about the challenges I faced getting a dementia diagnosis.
I know how difficult and frustrating it can be to wait a long time to get the correct diagnosis when you know something isn’t right.
I’m calling on the new Government to take action and increase diagnosis rates, and simply make the system easier to navigate. This is a vital change, so everyone living with dementia can access the support they need.
Ask your MP to visit us at Party Conferences
As the first step to living well with dementia, everyone should be able to access a timely, accurate and quality diagnosis.
Invite your MP to visit our party conference stand – and help us put people affected by dementia back in the driving seat.
This article was first published in May 2022 and most recently updated in September 2022.
Anne Lovell
saysJune O'keeffe
saysHarvey Abramson
saysRuth
saysAfter 5 difficult years my husband was finally diagnosed with Fromtal lobe dementia . That was it . No help ,no advice ,no support .
Just a diagnosis and a form to fill about Power of Attorney !
I feel very scared about the future
Anonymous
saysHi there Ruth,
We're really sorry to hear about your husband's diagnosis. This must be a very frightening time.
We have a practical guide that may be helpful - the free booklet is here to support you to care for someone else, as well as to look after yourself: https://www.alzheimers.org.uk/get-support/publications-factsheets/carin…
There's also a free factsheet about Frontotemporal Dementia (FTD) or frontal lobe dementia: https://www.alzheimers.org.uk/sites/default/files/2019-09/factsheet_wha… We have pages on the website about it: https://www.alzheimers.org.uk/about-dementia/types-dementia/frontotempo…
You might benefit from joining our online community, Talking Point. Here, you can get advice and support from people affected by dementia who have often been through similar situations. You can browse the conversations within the community or sign up for free: https://forum.alzheimers.org.uk
Also, please know that you can always call our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They can listen to your situation and provide specific information and advice. You can find more details about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this helps for now - and remember to call the support line on 0333 150 3456 if you need someone to talk to. You are not alone, Ruth.
Alzheimer's Society blog team
Lin Rand
saysMy husband has vascular dementia, having a diagnosis hasn't made any real difference. We've had several assessments by social services, talked to an admiral nurse. The excellent care company we're with don't do council contracts because the money isn't enough. The council wanted me to change to another company but my husband needs the same people, he doesn't like change. The other companies aren't reliable. The CAB have checked we're getting any benefits we're eligible for but I've had to cut back on the hours we get. I have 4 hours off a week and our carer gets him up, showered and dressed 5 days a week. I'm exhausted, I don't need to talk to someone, I need the support cancer patients get from Marie Curie and Macmillan nurses. They came every week, sat with my Dad so my mum could go out. This was all free.
Anonymous
saysWe're sorry to hear about the challenging situation you're going through, Lin.
Alzheimer's Society is trying to make the voices of people affected by dementia - like yours - heard by policy makers. We're calling on the government to make sure that people affected dementia are able to access the quality social care they deserve, when they need it.
Would you be interested in speaking with our Stories team at the Society, so you can help to raise awareness about the challenges you're facing? We have an online form to take some information, if you're happy to provide them and be contacted: https://www.alzheimers.org.uk/form/share-your-story-with-us
And while talking to someone may not be something you need right now, here's the number for our support line if ever you do need to talk to a Dementia Adviser: 0333 150 3456 (Opening hours, including for the Bank Holiday weekend, are here: https://www.alzheimers.org.uk/dementia-connect-support-line) They may be able to provide further information on practical support or local services near you.
We hope this helps for now, Lin. Please do call us if you ever need us.
Alzheimer's Society blog team
Peter Jones
saysWell done on telling your story
Val Simper,
saysI had to go back to our gp 5 times before he would refer my husband to the memory clinic. He has mixed dementia and on medication. Why don't the gps listen as it isn't something u would make up.
Terry pike
saysHi Gina, Your experience sounds very much like my own journey because my original concern was about episodes of head fog the GP did listen but noticed decided a small psoriasis patch and decided that would need further investigation, as a result I had a number of tests but none offered a clear answer so I had to try again and finally got referred for the more sensitive brain scan which found some evidence for some small memory problems only after I questioned the repeated result of GP testing. I suspect to many people with early symptoms just accept the GP decision which does not explain the most early symptoms, hopefully things are beginning to change with the recent TV vids about the most early symptoms when so much more can be done to minimize them.
Terry