Dementia Support Line
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 dad was diagnosed with dementia in 2019.
He is...
My wife, Cathy, had been having memory problems for some time but would not acknowledge it was dementia. She continued in denial but was ultimately referred to a...
My dad was referred by our GP on 22/01/18 and finally...
Last year my lovely wife Joyce died from cancer and...
We lost my mum to Dementia 22/9/2023. She had...
My Mum was diagnosed with Early Onset Alzheimer’s...
I was diagnosed with early onset of alzheimers in...
My Mam had vascular dementia.
Her behaviour at times was unpredictable.
Thankfully for all she deteriorated quite quickly before she passed away.
So we were spared...
My husband died of this alfull disease 17yrs ago..there was not much help as they didn't make it so much on news .so very little help...so glad to see it's more help...
Both my parents were diagnosed with Alzheimers in 2018. My Mum was late onset and died of it 2 years later. It was dreadful watching her decline from a smiling,...
I actually made contact with ReCognition health who conducted a DNA test which revealed I had APOE 3 & APEO 4 as mum mother and grandfather had both suffered fro...
My grandmother was diagnosed with frontal lobe...
My dad was diagnosed with dementia in 2019.
He is now 79 and previously to his diagnosis he was very fit with no health problems and took no medication for anything.
He had a very fit physique and worked hard all his life, outdoors and was a strong person
Looking back we can now say dad had symptoms probably a few years beforehand, just those small changes which at that time if he did know anything, he wouldn’t have said to us, in fact hisden it if he could.
Covid lockdown and mum and dad been just over an hour away for myself and my sister, followed by my mum diagnosed with breast cancer, it’s fair to say added pressure, upset, challenges and care for them for us all. My sister dealt with contacting a social worker for dad, she took care of paperwork, phone calls and dads overall who and what to do next sorts of things. We were all blind to the medical side and also no clue to what would follow, in how any help or needs we should get for them. My sister and I for around 17 months shared everything in travelling, staying with them, taking them to g.p hospital appointments, organising there finances, and basically exhausted to a point that we both knew we couldn’t carry on with all as we were doing, not physically or mentally, and I look back now and although it took a long time, dads social worker took the decision herself and that load off us to say it was time for dad to go into a home permenantly. I recall feeling a little shocked at that time, as if it felt almost too sudden or not expected? Probably as we were so used to been full on with it all it was as if the breaks had been put on and startled us a little 🙈my dad had been in the same home on multiple occasions for respite, and the home felt like a second family to us and only 20 min from there home. Mum is a tough cookie and I cannot begin to state how much health issues and operations she has had along the way she has quite a medical journey which she always goes in has what ever they need to do and carries on as if she went away for a spa or similar.
Her and dad had gone through pretty much every challenge in life that most couples find alarming 😩🤷🏽♀️but always strong and got on with it. Only now had they actually spent soooo much time together at home in there life, put covid on top and dad much worse with daily life and mum breast cancer which took a sad turn been much more advanced than 1st thought. Communication was very tense and me and my sister had to become taking charge and talking without mum and dad involved? This added more pressure as mum felt very uneasy and angry that we had took things on without her knowledge and dad was worsening by the day yet our hearts were breaking for him as mum wasn’t and couldn’t cope and dad got the brunt of it as she didn’t want to accept this huge life changing situation which was so overwhelming 🥲 I became my dads cater for weeks at a time to basically get him out go places and actually just have a laugh we were like kids and those memories I’ll keep forever, we just had fun got out and it allowed dad to be just that. It gave mum a rest and then I would cook etc and keep them both sane whilst sister got on with the sorting and talking she needed to do with social worker Gp hospital finances and look for all what needed to be done and in place I came home now and then to do what I could and then back where I’d say my mind had left my own life to do 12-15 month of live in carer at mum and dads. Today dad is in the same home settled and mum visits many days where she joins in too with the home as if she’s part of the team and her and dad both actually look well go out locally and laugh and get on as if they both just met❤️ yet dad is much much worse where he doesn’t know day month year or anything other than the moment he’s in yet has us and everyone laughing and probably helps everyone else in the home as they all have no mobility or little and it’s heartbreaking 🥲🥲to see him laugh to look only a short while ago who he was and how brutal this disease is! It’s as if it’s disbelief that there brain is dying each day as you watch it do so, feeling helpless as nothing can be done and yet this is what I would describe as the worse silent horrible medical incurable invisible condition which devastates many of the family there lives and YET affects so many? Of course each and everyone of us needs to SHOUT OUT!! As not only to be heard and make a difference to change that but NO one can SEE it no ONE would know it and NO one is expected to UNLESS you are part of it suffering with the thousands that are. Every family live differently and every household affected are unique and personal in there own life and challenges, there is no kind of rules you can put on paper to follow as such and waiting until you become a part of dementia in some way is not a roll of a dice you do or don’t NO one should live and watch loved ones exist to a point of cruelty and suffering it’s not acceptable to see a physical person who you love who you have known to be either your partner your parent your friend etc and live and care in a world which turns into isolated confused collapse from the world you knew and be alone until others like this offer there hand as there in that same place. It is not a medical issue in fighting to make them better it’s a world to which you no longer have but existing in it with no one to help to explain to give care to tell you where here to say it’s okay and guide you to give advice etc etc and not turn a blind eye or not acknowledge it because you don’t see it or hear it,,, it’s massive it’s here and it is not right to ignore this stories need to be read voices must be heard and has to be now? This as been here for many years the huge research the 1000’s who are diagnosed the education we have on this YET other than the ones suffering how the hell is there no trained employment caters and support there when this happens?? Why not it’s almost ALL hidden yet bursting to explode in the world before it’s accepted to have many people waiting to help you along in every way that just eases explains and helps you along? How the hell are we still just sharing amongst ourselves telling our own stories battling and crumbling by it today….why have we still not automatically got all resources right there for guidance why is there a fight for all the acknowledgement on top of it it’s like pot luck? Where you live? Your council? No homes who deal with such? In 2024 this is not acceptable in anyway because you don’t see it? There is more than enough knowledge but know follow on?😡going to mp’s and standing with thousands of signatures and fighting for? Because of ignorance and it’s hard enough to be having this on top it’s upsetting heartbreaking hard and needs to be offered right now to all with dementia who need it they all do need this and where screaming this to you where giving you stories so why is it not in place we watch some one we have known in life and taught us life itself reverse little by little and it’s an awful thing to watch and be alone we shouldn’t experience this in life and no one to be there it’s frightening it’s suffering and it needs to be just fair in our world
He is now 79 and previously to his diagnosis he was very fit with no health problems and took no medication for anything.
He had a very fit physique and worked hard all his life, outdoors and was a strong person
Looking back we can now say dad had symptoms probably a few years beforehand, just those small changes which at that time if he did know anything, he wouldn’t have said to us, in fact hisden it if he could.
Covid lockdown and mum and dad been just over an hour away for myself and my sister, followed by my mum diagnosed with breast cancer, it’s fair to say added pressure, upset, challenges and care for them for us all. My sister dealt with contacting a social worker for dad, she took care of paperwork, phone calls and dads overall who and what to do next sorts of things. We were all blind to the medical side and also no clue to what would follow, in how any help or needs we should get for them. My sister and I for around 17 months shared everything in travelling, staying with them, taking them to g.p hospital appointments, organising there finances, and basically exhausted to a point that we both knew we couldn’t carry on with all as we were doing, not physically or mentally, and I look back now and although it took a long time, dads social worker took the decision herself and that load off us to say it was time for dad to go into a home permenantly. I recall feeling a little shocked at that time, as if it felt almost too sudden or not expected? Probably as we were so used to been full on with it all it was as if the breaks had been put on and startled us a little 🙈my dad had been in the same home on multiple occasions for respite, and the home felt like a second family to us and only 20 min from there home. Mum is a tough cookie and I cannot begin to state how much health issues and operations she has had along the way she has quite a medical journey which she always goes in has what ever they need to do and carries on as if she went away for a spa or similar.
Her and dad had gone through pretty much every challenge in life that most couples find alarming 😩🤷🏽♀️but always strong and got on with it. Only now had they actually spent soooo much time together at home in there life, put covid on top and dad much worse with daily life and mum breast cancer which took a sad turn been much more advanced than 1st thought. Communication was very tense and me and my sister had to become taking charge and talking without mum and dad involved? This added more pressure as mum felt very uneasy and angry that we had took things on without her knowledge and dad was worsening by the day yet our hearts were breaking for him as mum wasn’t and couldn’t cope and dad got the brunt of it as she didn’t want to accept this huge life changing situation which was so overwhelming 🥲 I became my dads cater for weeks at a time to basically get him out go places and actually just have a laugh we were like kids and those memories I’ll keep forever, we just had fun got out and it allowed dad to be just that. It gave mum a rest and then I would cook etc and keep them both sane whilst sister got on with the sorting and talking she needed to do with social worker Gp hospital finances and look for all what needed to be done and in place I came home now and then to do what I could and then back where I’d say my mind had left my own life to do 12-15 month of live in carer at mum and dads. Today dad is in the same home settled and mum visits many days where she joins in too with the home as if she’s part of the team and her and dad both actually look well go out locally and laugh and get on as if they both just met❤️ yet dad is much much worse where he doesn’t know day month year or anything other than the moment he’s in yet has us and everyone laughing and probably helps everyone else in the home as they all have no mobility or little and it’s heartbreaking 🥲🥲to see him laugh to look only a short while ago who he was and how brutal this disease is! It’s as if it’s disbelief that there brain is dying each day as you watch it do so, feeling helpless as nothing can be done and yet this is what I would describe as the worse silent horrible medical incurable invisible condition which devastates many of the family there lives and YET affects so many? Of course each and everyone of us needs to SHOUT OUT!! As not only to be heard and make a difference to change that but NO one can SEE it no ONE would know it and NO one is expected to UNLESS you are part of it suffering with the thousands that are. Every family live differently and every household affected are unique and personal in there own life and challenges, there is no kind of rules you can put on paper to follow as such and waiting until you become a part of dementia in some way is not a roll of a dice you do or don’t NO one should live and watch loved ones exist to a point of cruelty and suffering it’s not acceptable to see a physical person who you love who you have known to be either your partner your parent your friend etc and live and care in a world which turns into isolated confused collapse from the world you knew and be alone until others like this offer there hand as there in that same place. It is not a medical issue in fighting to make them better it’s a world to which you no longer have but existing in it with no one to help to explain to give care to tell you where here to say it’s okay and guide you to give advice etc etc and not turn a blind eye or not acknowledge it because you don’t see it or hear it,,, it’s massive it’s here and it is not right to ignore this stories need to be read voices must be heard and has to be now? This as been here for many years the huge research the 1000’s who are diagnosed the education we have on this YET other than the ones suffering how the hell is there no trained employment caters and support there when this happens?? Why not it’s almost ALL hidden yet bursting to explode in the world before it’s accepted to have many people waiting to help you along in every way that just eases explains and helps you along? How the hell are we still just sharing amongst ourselves telling our own stories battling and crumbling by it today….why have we still not automatically got all resources right there for guidance why is there a fight for all the acknowledgement on top of it it’s like pot luck? Where you live? Your council? No homes who deal with such? In 2024 this is not acceptable in anyway because you don’t see it? There is more than enough knowledge but know follow on?😡going to mp’s and standing with thousands of signatures and fighting for? Because of ignorance and it’s hard enough to be having this on top it’s upsetting heartbreaking hard and needs to be offered right now to all with dementia who need it they all do need this and where screaming this to you where giving you stories so why is it not in place we watch some one we have known in life and taught us life itself reverse little by little and it’s an awful thing to watch and be alone we shouldn’t experience this in life and no one to be there it’s frightening it’s suffering and it needs to be just fair in our world
Julie
My wife, Cathy, had been having memory problems for some time but would not acknowledge it was dementia. She continued in denial but was ultimately referred to a specialst unit. The Doctor visited us at home and established she had Alzheimer's without Cathy realising she was being diagnosed. This opened the door to support and medication which was a huge comfort.
Howard
My dad was referred by our GP on 22/01/18 and finally diagnosed on 27/11/19 with mixed dementia (cognitive & functional) also Lewy body. He had been seen at the memory clinic 3 times and they always said that it was mild cognitive impairment. Once diagnosed things got better, Alzheimer’s Society helped me with information and benefits were applied for and I was made my dad’s appointee. I went to their support groups where I could cry and listen to others and what they were going through too. After all the confusion and hallucinations and fear and anxiety that my dad was going through and the wandering and getting lost, he was moved into residential care. The move was during a covid outbreak so I took him to the care home that day and had to leave him at the door and walk away I never even got leaving him down to his room and I wasn’t allowed a visit for 2 weeks, it was so heartbreaking. After 2 years he was then moved to nursing care due to aspiration. I am so happy now with the care that he is getting so it is vital to get that early diagnosis. My daddy is now settled and content and is quite a character, his carers and nurses just love him. He’s happy and healthy and his wee cheeky smile and twinkling eyes just melts my heart. I just agree with all that he tells me and listen to his wee stories. He doesn’t know me but he knows I’m familiar as his wee face lights up when I go to visit him. I can sleep at night now knowing that he’s getting the care that he needs and I will always be there for him.
Hazel
Last year my lovely wife Joyce died from cancer and Alzheimer's after 66 years of marriage. Our last year together was horrible, Joyce was no longer my lovely wife and companion, but a different and difficult person who rejected my care so I had to let here go into a care home for her last eighr months, Heart breaking
Lawrence
We lost my mum to Dementia 22/9/2023. She had suffered for least five years and we had give her the freedom to live in the support of carers at a care home. At first she was ok, but as years went by and onset of covid she got steadily worse. It was sad to see her, how she had deteriorated especially when she began losing her teeth-she was so proud of them as up till dementia took hold at 84 she had her own teeth and was so proud of this. She was also proud of her appearance but when we saw her clothes did not sit right on her.
The care home were excellent in her care, but dementia took hold till she could manage any longer.
The care home were excellent in her care, but dementia took hold till she could manage any longer.
Christine
My Mum was diagnosed with Early Onset Alzheimer’s aged 54 in 2010. We had noticed Mums behaviour change 4 years prior to this but when she approached her GP, was told her symptoms were normal for someone going through the Menopause. It took a change of GP and GP surgery for her to be sent for a full MRI scan which then led to a diagnosis. This was truly devastating for my Mum and the family, she finally had the medication and help to support her. I want a world without families having to fight for a diagnosis, for GPs to truly listen to families and not ‘pass off’ symptoms of Dementia for things such as the Menopause.
Jenny
I was diagnosed with early onset of alzheimers in 2020 after 2 years of tests. Helping to fight this been on 4 research programs and helped develop cogno speak with Sitran sheffield. This lead to been on bbc live to show my story. The hardest part of the illness is the wait to confirm my diagnosis . 2 years of been proded and poked had more brain scans than I can remember. Been married for 24 years and have the best family ever 3 children and 2 grandchildren. Making memories and keeping fit helps me along with a good diet
Mark
My Mam had vascular dementia.
Her behaviour at times was unpredictable.
Thankfully for all she deteriorated quite quickly before she passed away.
So we were spared a lot of the sad things about this very cruel disease.
I have also worked for many years in the care home environment so have seen lots of different variations on the disease.
Love to all those currently living and dealing with this dreadful condition.
Her behaviour at times was unpredictable.
Thankfully for all she deteriorated quite quickly before she passed away.
So we were spared a lot of the sad things about this very cruel disease.
I have also worked for many years in the care home environment so have seen lots of different variations on the disease.
Love to all those currently living and dealing with this dreadful condition.
Elisabeth Baker
My husband died of this alfull disease 17yrs ago..there was not much help as they didn't make it so much on news .so very little help...so glad to see it's more help now..its such a sad thing to see.you loose them every day again and again.....thank you for trying to get more done ..kay
Kay
Both my parents were diagnosed with Alzheimers in 2018. My Mum was late onset and died of it 2 years later. It was dreadful watching her decline from a smiling, creative, generous person to a shell of her former self. My Dad had a totally different path with his dementia in that he knew who we were and could communicate his views and was pretty active until the end but again he was a shell of his former self but he knew what was happening to him and he got understandably frustrated by it. He died in 2022
In both cases we fought tooth and nail to get help from the doctor and so called Social Services. Everything was a challenge and it tore the family apart. There was very little real help out there. The most helpful people for us was Age UK even if it was just someone we could talk to about the situation. Luckily we were able to fight for them and could employ private carers ourselves. Those carers helped us in so many ways, I don't know what we would have done without them.
Dementia is a wicked disease for everyone involved.
In both cases we fought tooth and nail to get help from the doctor and so called Social Services. Everything was a challenge and it tore the family apart. There was very little real help out there. The most helpful people for us was Age UK even if it was just someone we could talk to about the situation. Luckily we were able to fight for them and could employ private carers ourselves. Those carers helped us in so many ways, I don't know what we would have done without them.
Dementia is a wicked disease for everyone involved.
Angela
I actually made contact with ReCognition health who conducted a DNA test which revealed I had APOE 3 & APEO 4 as mum mother and grandfather had both suffered fro Alzheimer’s. I was then offered a place on a drug trial. Have over the past 5 years trialed 4 different drugs, some of which might have been a placebo dose but one at least was the drug and is similar to the 2 being assessed by NICE. Mine has been halted because it is so similar to those being asssed but didn’t have such a high positive result.
Philip
My grandmother was diagnosed with frontal lobe dementia in 2019. She was, at that time, living independently in her own flat in an assisted living property. We struggled as a family to find support once the GP had diagnosed her and she ended up in a care home for 24hr care. We had tried to look after her ourselves as a family but could not be on hand 24hrs a day. She became a danger to herself due to wandering at all hours of the day and night and being brought back home by neighbours, the police and by paramedics. It was the latter who had spoken to us to make us realise that 24hr care would be better in keeping her safe. We found the most amazing care home, which not only gave her back some independence and quality of life but we was also able to accept the rapidly moving diagnosis and enjoy our time with her until she sadly passed away in 2022 aged 93. I nursed her during her final days and was there at her last breath as she was there at my first.
Michelle
Share your diagnosis story
Share your diagnosis experiences with us, so we can show decision makers the realities and issues people are facing.