Share your diagnosis story
We want to show decision-makers across the UK the realities of seeking a dementia diagnosis.
Share yours or a loved one's diagnosis story today and we'll add it to our story wall.
Let's make dementia a priority.
My wife, Eve was diagnosed Approx' 11 years ago. Eve knew something was wrong and kept saying : I think I am loosing it: We went to our G.P. He referred us to an...
![](/sites/default/files/styles/user_story_mobile/public/webform/user_stories/IMG_1688.jpeg?itok=LeVyB1Xk)
There was a lot of confusion and stress before having...
I was slightly confused and of course when u have Dementure
U r disbelieved in most things u say so it becomes difficult to express yourself or when u do people just...
![](/sites/default/files/styles/user_story_mobile/public/webform/user_stories/IMG_0574.jpeg?itok=KcnfDPD4)
My husband, Bill, was only 53 when I noticed things...
My lovely mum passed away in January 2011 from dementia, it was a dreadful time to see her go downhill over the years from being a capable lady and being to do most...
![](/sites/default/files/styles/user_story_mobile/public/webform/user_stories/IMG_20201219_090159_145.jpg?itok=Cg7hPwPL)
My father was diagnosed with Alzheimer's 10 years...
![](/sites/default/files/styles/user_story_mobile/public/webform/user_stories/9e09eb38-d498-4aab-bf76-4b7499894c0b.jpeg?itok=NHeZYw5V)
Everyone said “Oh you can live for years with...
![Dementia Action Week supporter](/sites/default/files/styles/user_story_mobile/public/media/images/image/2024-05/IMG_3513-portrait.jpg?itok=2WUdW-Jw)
We went through a 2 year period from seeking advice...
![Dementia Action Week supporter](/sites/default/files/styles/user_story_mobile/public/media/images/image/2024-05/20240513_170954-portrait.jpg?itok=_F07d7Uy)
Well which story? My mother, mother in law and now my...
![Dementia Action Week supporter](/sites/default/files/styles/user_story_mobile/public/media/images/image/2024-05/1000000147-portrait.jpg?itok=na8cSKtd)
God bless those that care and help dementia sufferers...
![Dementia Action Week supporter](/sites/default/files/styles/user_story_mobile/public/media/images/image/2024-05/IMG_1161-portrait.jpg?itok=ErWD33FX)
My husband John visited our GP for a problem shoulder...
My 87 year old Grandma is living with Dementia in a care home due to a fall she had in the home due to lack of support for my Grandad the primary carer. Despite having...
My wife, Eve was diagnosed Approx' 11 years ago. Eve knew something was wrong and kept saying : I think I am loosing it: We went to our G.P. He referred us to an Alhiemer's specialist where the diagnosis was confirmed. Eve and me coped very well untill lockdown. Eve started to detrioate through this time. Christmas 2022 she became much worse, Confused did not recognise me, family, freinds, her sons and Daughter, later the same year she developed double incontinence. All this time I was her main carerer. In August 2023 she was aditted to a Care Home. I now live alone, life is now very sad. This is a living bereavment. Early diagnosis is so important in order to enjoy what time is left.
John
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There was a lot of confusion and stress before having the diagnosis of my mother’s dementia. It was important to know exactly what was wrong with my mum knowing what was causing her personality and behaviour changes and not fully understanding what was happening to someone I deeply loved. The diagnosis was frightening and very upsetting, however it meant I could more forward to putting in place the best methods and options to help support my mum, and to research what I could do personally to help in this journey that we were both experiencing. I attended a carers support group, had a good supportive GP at the time, had my mum attend a day centre with activities to provide stimulation and avoid isolation. It was a difficult stressful time and a extremely emotionally rollercoaster seeing someone you love deteriorate. At times I felt very much alone, with dementia and a lot of people at the time knew nothing about the illness which made it more isolating. What I would like to see is more places for the elderly to attend. The day centre my mother attended has now been closed, this has an impact on making the elderly more isolated. More specialist nurses who have had proper training to deal with dementia, most nurses at the time did not have the proper training on dementia. To provide more knowledge to the general public, helping them to be able to see the signs and seek medical advice promptly instead of leaving there parents to struggle with this condition. Giving them more advice on how to navigate your way round to provide the best care for the person who is suffering sometimes in silence. Having society to see this illness not as shameful event but as a opportunity to grow in strength to become their voice which they have lost, and not to have to fight for resources, this area just added more stress to the situation knowing there was no help for a day off from caring.
Hoping in the future more organisations, family members, will be able to understand the condition and it will become a topic you can comfortably talk about.
Hoping in the future more organisations, family members, will be able to understand the condition and it will become a topic you can comfortably talk about.
Julie
I was slightly confused and of course when u have Dementure
U r disbelieved in most things u say so it becomes difficult to express yourself or when u do people just look at u with blank faces as much as to say “ u have got it and there is nothing we can do about it other than your daily pills which we have no idea if they are doing good or not, but we know each day we r fading away
I just pray they won’t put me in a home with people worse than I am. God Bless u all!
U r disbelieved in most things u say so it becomes difficult to express yourself or when u do people just look at u with blank faces as much as to say “ u have got it and there is nothing we can do about it other than your daily pills which we have no idea if they are doing good or not, but we know each day we r fading away
I just pray they won’t put me in a home with people worse than I am. God Bless u all!
Martin
![](/sites/default/files/styles/user_story_lightbox_mobile/public/webform/user_stories/IMG_0574.jpeg?itok=43WHQ4wT)
My husband, Bill, was only 53 when I noticed things weren’t right and this was in early 2013. He was anxious and afraid of what was happening to him but couldn’t explain how he felt. I went to the GP first without his knowledge to try and explain his behaviour and to ask the GP to make him an appointment. The GP didn’t agree to my request at first but then asked Bill to go to the surgery. The GP wasn’t sure what was happening to Bill but said he would refer him to the Neurology department but there would be a long waiting list. I decided to make a private appointment for Bill to be seen earlier as it was having a huge impact on our lives. We got the appointment later in 2013 but not a proper diagnosis. We then saw a neurologist through the NHS who was amazing and arranged for a brain scan and eeg plus other tests. Bill was finally diagnosed in 2014 with early onset dementia/probable Alzheimer’s. We went through the whole devastating process and sadly Bill passed away in January 2023, aged 63.
I hope GPs are now more aware of the impact of dementia and I hope the waiting time for a diagnosis is now a lot less.
I hope GPs are now more aware of the impact of dementia and I hope the waiting time for a diagnosis is now a lot less.
Joanne
My lovely mum passed away in January 2011 from dementia, it was a dreadful time to see her go downhill over the years from being a capable lady and being to do most things for herself to not being able to do much at all, we as a family tried to look after her at home but eventually she went into care, but kept having falls and wondering around not knowing where she was, so the decision was made for her to go into residential care,where she stayed until she passed away in 2011, There were challenges that we had to overcome and she was well cared for, but towards the end of her life she didn’t know who any of us were. I would like to see the government act and make changes to help people like my lovely mum who are suffering from dementia.
Jane
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My father was diagnosed with Alzheimer's 10 years ago. My mother looked after him until her death in August 2019. Within 2 hours of finding my mother dead in bed, my father had moved in with us and stayed with us during the Covid pandemic until April 2021 when I made the incredibly difficult decision to put him into a Care Home.
It was really hard, he was sonambulant and often went missing with everyone running around the village and fields to search for him. He was doubly incontinent and unable to do much for himself. The stress of looking after him day and night really took it's toll on my health as well as that of my 24 year old daughter who still suffers from anxiety. By the time he went into a Care Home he had little idea who we were as a family.
My father is now 93 years old, the money for his care has run out (almost £300,000), has advanced Alzheimers and the Local Authority now want to move him to a cheaper Home even though the Home, GP and the independent Assessor have both said he should not be moved.
They take £2,750 a month of his Pension (leaving him with about £15 per week) and the contribute just £200 per week. They say we should contribute £1,600 per month to make up the difference, which we can't afford.
They say on one hand that he doesn't need 1-1 care, however he can nothing for himself. Now unable to feed himself, walk, hardly speaks, and just eats and sleeps his care needs are very high. So high in fact, that no other Care Home will take him on!! It's an oxymoron really.
Until he needs dedicated nursing care, they say they can do no more.
It's incredibly stressful and too sad for words that a man who fought for his country, was in the Foreign Office, a Military Historian with over 20 books to his name and paid all his dues over the years is reduced to this undignified end. In some ways I'm thankful that he is unaware.
It was really hard, he was sonambulant and often went missing with everyone running around the village and fields to search for him. He was doubly incontinent and unable to do much for himself. The stress of looking after him day and night really took it's toll on my health as well as that of my 24 year old daughter who still suffers from anxiety. By the time he went into a Care Home he had little idea who we were as a family.
My father is now 93 years old, the money for his care has run out (almost £300,000), has advanced Alzheimers and the Local Authority now want to move him to a cheaper Home even though the Home, GP and the independent Assessor have both said he should not be moved.
They take £2,750 a month of his Pension (leaving him with about £15 per week) and the contribute just £200 per week. They say we should contribute £1,600 per month to make up the difference, which we can't afford.
They say on one hand that he doesn't need 1-1 care, however he can nothing for himself. Now unable to feed himself, walk, hardly speaks, and just eats and sleeps his care needs are very high. So high in fact, that no other Care Home will take him on!! It's an oxymoron really.
Until he needs dedicated nursing care, they say they can do no more.
It's incredibly stressful and too sad for words that a man who fought for his country, was in the Foreign Office, a Military Historian with over 20 books to his name and paid all his dues over the years is reduced to this undignified end. In some ways I'm thankful that he is unaware.
Claire
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Everyone said “Oh you can live for years with Alzheimer’s “. So when my mum was diagnosed in April 2022 I started to get everything in place to keeping her safe and getting the help she needed to stay at home. My youngest brother lived with her so luckily knew she wasn’t alone at night. I myself and a family friend decided we could take care of her ourselves and if necessary later down the line we would get careers as extra help. My other brother said he would do what he could and so did my adult children. Sadly in May mum fell out of bed and broke her shoulder so was admitted into hospital. From there it was decided she needed to recover in a residential home. Again I was planning for the long term and so carried on getting everything ready for her to go back into the house she loved. Sadly she deteriorated very quickly and within a few weeks she was bedridden. I watched as my once full of life and ever up to an adventure mum became a frail old woman. Very often she thought I was her mum and it broke my heart. She became very angry and again I bore the brunt of that. Never the less I loved her and didn’t let her see how upset and helpless I felt. The day I was taken into the office and told she was now going to be on end of live care I fell apart. On October 2022 she passed away in the early hours before the nurse on duty had time to call me to be with her. So 6 months from diagnosis she was gone. I felt cheated which sounds selfish but I really thought she would have more time. Looking back now I feel that maybe it was a blessing that she didn’t suffer for years and we didn’t have to witness her slowly disappearing from the person she once was. During those few months the Alzheimer’s Society was a wonderful support and I’m grateful to the people at the end of the phone for letting me have someone to talk to. I only hope that in time this cruel disease can be eradicated.
Marlene
![Dementia Action Week supporter](/sites/default/files/styles/user_story_lightbox_mobile/public/media/images/image/2024-05/IMG_3513-portrait.jpg?itok=KrIZAx7y)
We went through a 2 year period from seeking advice from our doctor to getting the official d diagnosis from the Memory Clinic.
It came the same time I broke my leg and Covid kicked in. I also became my wife’s sole carer. Due to Covid, information and contact with the agencies was limited.
It came the same time I broke my leg and Covid kicked in. I also became my wife’s sole carer. Due to Covid, information and contact with the agencies was limited.
Chris
![Dementia Action Week supporter](/sites/default/files/styles/user_story_lightbox_mobile/public/media/images/image/2024-05/20240513_170954-portrait.jpg?itok=HpFcgnug)
Well which story? My mother, mother in law and now my daughters mother in law were dealt the cruel hand of dementia. Each one took more than 2 years for us to have a formal diagnosis and all too late to really link in with community day care , or slowing down drugs. My mum was pleasntly happy in her confusion until she died, but my my MILaw was tormented, anxious, scared until she died after 5 years in a nursing home, 2years lying in a bed unable to communicate.
We all struggled with them, and now 10 years later nothing has changed in the speed of getting treatment after we knew what was wrong with my daughtdrs MILaw! 2 years from going to GP to finally starting on some medication to help. Tooò slow still !
We all struggled with them, and now 10 years later nothing has changed in the speed of getting treatment after we knew what was wrong with my daughtdrs MILaw! 2 years from going to GP to finally starting on some medication to help. Tooò slow still !
Pippa
![Dementia Action Week supporter](/sites/default/files/styles/user_story_lightbox_mobile/public/media/images/image/2024-05/1000000147-portrait.jpg?itok=ggWfKHfT)
God bless those that care and help dementia sufferers a chap who moved in next door to me was suffering with what I can only imagine must have been excruciatingly difficult and he thought I was playing loud music all night to him it was real eventually after trying to reason with him for 2 hrs he attacked I knew he had dementia so I did not retaliate but it has shocked me how many people incorrectly said I should of hit him its not about me or my ego it's about dementia sufferer going through a living nightmare sufferers need a diagnosis and support I fear disaster looms for the sufferer there family carers and general public the government needs to understand this action for diagnosis is vital for everyone no brushing under the carpet
Robin
![Dementia Action Week supporter](/sites/default/files/styles/user_story_lightbox_mobile/public/media/images/image/2024-05/IMG_1161-portrait.jpg?itok=2_cqMZhd)
My husband John visited our GP for a problem shoulder but mentioned to him that he was worried about his memory. GP did the usual quick test and agreed John needed further input from the memory clinic. 3 weeks later we had an appointment and John is now on medication. Johns quick action and GP will help greatly as his diagnosis has been recognised early.
Pam
My 87 year old Grandma is living with Dementia in a care home due to a fall she had in the home due to lack of support for my Grandad the primary carer. Despite having a care plan and family visiting every single day, the carers at the home do not implement her care plan due to lack of understanding and proper training on what Dementia patients need - she can't find the words to answer their questions, so she says "No" when asked if she wants to leave her room or if she needs something, not because she doesn't want to bit she can't find the language to express her needs. Food is put in front of her and her hands don't always work for her but her carers did not feed her and it took other residents to alert us to the fact she wasn't able to feed herself and so wasn't eating. My Grandma was feisty in her previous life but Dementia has turned her into a sweet old lady, who smiles and doesn't make a fuss and this means that she is left and ignored by carers who know she hasn't a voice to complain about her treatment. All care staff need to have Dementia training just like all teachers have dyslexia training- more of us are being diagnosed with Dementia, so we need to get really good at supporting it. The recognition and support for Dementia is much better than in the 90's when my Great Grandma had it but progress is so slow and taboos still need to be broken down, more sophisticated diagnosis methods need to be shared with GPs (my Grandma wasn't spotted for years as she was great with dates despite only knowing her first Great Grandchild, my daughter as 'the baby' as she had lost her name) and support for all those living with Dementia at any stage to live a dignified and fulfilled life.
Phillippa
Share your diagnosis story
Share your diagnosis experiences with us, so we can show decision makers the realities and issues people are facing.