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.

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I was diagnosed with Alzheimer's frist in 2021,By post with out even seeing a consultant I was coping or so I.thought until I had a mental health breakdown and spent 5...
My mum had dementia it was not very nice. I didn’t understand it at first but as time went on it was not nice. She had it for 5 years then died in 2020 . The government...
My beloved father was one of the g...
My lovely husband, Jack , was eventually diagnosed with Vascular dementia 12 years ago --- it took 2 years and a lot of fighting to get a diagnosis. I cared for him at ...
Summer 2022 …I knew things weren’t...
I am hoping that things are much better for people diagnosed with Alzheimer's now than when my father was diagnosed in the 1980s, in his early 60s, in the Scottish Bord...
My mum had dementia and sadly passed in 2019. Prior to diagnosis I so vividly remember a telephone conversation where she told me how scared she was - she (and we at th...
My husband is forgetting more each day and feels frustrated with himself. Now unable to drive and feels he has lost all of his independence.. Will not move far from t...
My mother had Alzhiemers and she was put in a care home, she used to walk around the corridor and hum some tunes, but whenever I visited her she didn't recognise me, bu...
Dementia Action Week supporter
I believe diagnosis is really impo...
My Dad was diagnosed 2004 he sadly passed away in 2012. During his illness I spent 5 days a week with him and worked an evening job .I had little support ,he had carers...
Dementia Action Week supporter
I was diagnosed 3 years ago and th...
I was diagnosed with Alzheimer's frist in 2021,By post with out even seeing a consultant I was coping or so I.thought until I had a mental health breakdown and spent 5 1/5 weeke in a mental health ward not good

David

My mum had dementia it was not very nice. I didn’t understand it at first but as time went on it was not nice. She had it for 5 years then died in 2020 . The government had a lot of her money from her which we didn’t agree with she worked all her live paying her taxes and didn’t get any help from anyone. I wouldn’t which that on anyone else to go through what we did. Hope it gets sorted thanks for reading this x

Helen

My beloved father was one of the greatest fathers one would wish to have - loving, talented, outgoing and we were the love of his life. Brilliant pianist. One day he forgot which tube to get - a line he’d been using for all his adult life. Over a period of 5 years he became like a small child, the piano stopped playing and the house became like a tomb. With increased double incontinence my mother could not cope and he was admitted to a nursing home and came to a state where he could no longer recognise us. He died just before my ordination in 2008. We will never forget him.

Reverend Ian

My lovely husband, Jack , was eventually diagnosed with Vascular dementia 12 years ago --- it took 2 years and a lot of fighting to get a diagnosis. I cared for him at home until last year when it became unsafe for me to continue so to do because of his falls and nursing needs.
I am now fighting to get help financially from NHS ICB towards his care. It seems that Dementia is not deemed worthy of or necessary to fund care for him. This end of life care needs a thorough overhaul which can only be done by Government sorting out the legal process

Ann

Summer 2022 …I knew things weren’t quite right with Sue, so asked our Family GP to see her, he agreed that she needed to be referred…this happened locally within a matter of weeks, and within the first 5 minutes the consultant said that Sue was in the first stages of Vascular Dementia…Sue had a brain haemorrhage in 1996, from which she was not expected to survive, so I was expecting something to happen…the Consultant was very kind and said we had been “lucky” that Sue had 26 years before the Dementia set in.
By February 2023, ( after 2 months in hospital for a bad fall ) Sue was completely immobile, doubly incontinent, could not really speak and needed help washing and dressing, and feeding.
We had to convert our living room to a bedsit for Sue…the equipment was ( and still is ) supplied free of charge…we have a team of Care Workers who visit twice a day every day, to wash and dress Sue…the rest of 23 hours, it is just me ( age 76 ) looking after my Sue. However, there are several people and Dementia contacts I can contact almost straight away if needed.
An early diagnosis is important, but nothing can prepare you for what is going to come…my Sue is very uncooperative, virtually impossible to hold a conversation with, will rarely feed herself, does not interact with our very few visitors…people seem frightened to make contact with you once they know Dementia is present.
The biggest problem I found was Dental treatment, it took me over 3 months to get Sue treated for 2 extractions, I had to go private at a cost of over £2500. I am paying this over 12 months as most of our savings have gone on paying for the Care workers visits.

Robert

I am hoping that things are much better for people diagnosed with Alzheimer's now than when my father was diagnosed in the 1980s, in his early 60s, in the Scottish Borders Region. We, as a family, were ill-prepared for how to handle the changes in him or how to get help (including financial help). My mother put up with a lot of verbal abuse from my previously gentle, kind and loving father. It was awful to watch the person we loved pretty much disappear. It was complicated by the fact that my dad had physical medical needs and so, once mum could no longer cope, a 'home' wouldn't take him and he ended his days in a mental hospital, which was distressing for him (he was still having lucid moments) and for the family. He died in 1995, aged 74.

Isabel

My mum had dementia and sadly passed in 2019. Prior to diagnosis I so vividly remember a telephone conversation where she told me how scared she was - she (and we at the time) didn’t understand what was happening to her. She told of how she cried after doctors appointments because nothing made sense. Hearing your mother feel frightened and alone is something you would not wish upon your worst enemy. The memory still haunts me to this day.

Jen

My husband is forgetting more each day and feels frustrated with himself.
Now unable to drive and feels he has lost all of his independence..
Will not move far from the house or the area he knows...His thinking process has gone out of the window and I have to guide him throughout...I try to be patient with him but at time feel frustrated myself...
Lost all reality causing us to have arguments at times and will walk off when we are at the shops forgetting where I am...

Yvonne

My mother had Alzhiemers and she was put in a care home, she used to walk around the corridor and hum some tunes, but whenever I visited her she didn't recognise me, but when she sat down in the conservatory the staff would take her dinner into her, but as soon as the staff member was out of the room my mother had forgotten about the food. I noticed that she began to look very frail, I have no pictures of my mother anymore, I was very sad to see her declining

Barry

Dementia Action Week supporter
I believe diagnosis is really important because 900,000 is an underestimation of the real problem. There is so much stigma about alzheimers and dementia that people don’t want to get diagnosed. The effects of the disease are catastrophic for all including the economy. There is prejudice too. I have met very educated people who think it only affects those who aren’t intellectual. The educated sometimes need to be educated too. My poor mother described it as not knowing who you are anymore.

Paula

My Dad was diagnosed 2004 he sadly passed away in 2012. During his illness I spent 5 days a week with him and worked an evening job .I had little support ,he had carers who came twice a day for such a short time it wasn't worth them coming ,they make him a drink and put him to bed at 6 o'clock in the evening ( which no-one wants to do) I felt so alone and During this time I had to deal with breast cancer.To see my dad sitting looking at the floor day after day was heartbreaking ( he was a very intectual person ).
I would like to see more research into the disease, early diagnosis and more support for patients and carers.

Angela

Dementia Action Week supporter
I was diagnosed 3 years ago and that was that I’ve had to deal with it on my own and I’ve had to give up driving

Suzanne

Share your diagnosis story

Share your diagnosis experiences with us, so we can show decision makers the realities and issues people are facing.

Share your story now