Dementia Support Line
Share your story
If you're ready to tell your story, we want your voice to be heard.
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?
It will take society to beat dementia. We’ll take your stories to those who need to hear them most, to help make dementia the political priority it deserves to be.
My dad William had dementia. It started when he was about 88. He became forgetful and a little eccentric. He moved in assisted living and had a new lease of life. He...
Well, I passed he 11+ exam, went to a grammar school,...
My mother whose first name was Mary spent her last five years with dementia . She knew her family by sight but could not recall their names , she entered a silent...
My husband was diagnosed with vascular dementia and Alzheimer’s in 2014. He passed away in 2022, a few months before our 55th wedding anniversary. Over those eight...
My wife Dorothy for 50 years was diagnosed in 2020 with Vascular Dementia , i had a carer come in the mornings to wash and dress her, rest of the time i cared for her...
I consider my self as a lucky sod living with a mild form of Dementia (mild cognitive impairment ) I have had two diagnosis one in the pandemic of Alzheimer's. I was...
My lovely mum has alzheimers and I've had to fight very very hard to keep her at home with care after she had to sell everything to pay for care before hand.She was a...
My husband Trevor was 59 when he was diagnosed with Parkinson’s and we both thought that was ok we could cope with that unfortunately 6 years later he was diagnosed...
I looked after my beloved mother for 6 years, she was...
My mum was diagnosed with vascular dementia 10years...
My first experience of dementia was when my mother was diagnosed with early onset at the age of 57 years old. She died in her 66th year of hypertensive heart disease....
My Mother was diagnosed with dementia and passed way with it after 6 years. For the last 9 months she did not recognise me. I found this very hard and then my sister...
My dad William had dementia. It started when he was about 88. He became forgetful and a little eccentric. He moved in assisted living and had a new lease of life. He was a member of the social committee and played the piano at social nights. As time went on it became more difficult for him to do the everyday things like work the tv or remember his meds.
Eventually he moved into a care home and straight away his health dipped. It was like we lost him to another world. Me and my siblings struggled to come to terms with it. I had a shift in the way I spoke with him. I joined him in his world. This helped to calm him down and have a better relationship with him. He died at 92 of kidney failure.
Eventually he moved into a care home and straight away his health dipped. It was like we lost him to another world. Me and my siblings struggled to come to terms with it. I had a shift in the way I spoke with him. I joined him in his world. This helped to calm him down and have a better relationship with him. He died at 92 of kidney failure.
Simon
Well, I passed he 11+ exam, went to a grammar school, then gained a degree from Cambridge Uni had a officer career in the Air Force... now I am a complete dunce. I can remember walking school when I was 5 and could show you the route, but don't ask me what I did yesterday because my brain is completely full and nothing new stays there anymore.
Alan
My mother whose first name was Mary spent her last five years with dementia . She knew her family by sight but could not recall their names , she entered a silent world of her own. At her
funeral the kindly vicar who conducted the service kept referring to her as Charlotte (her second
name) a name she never used. I might add her sister whose name was Charlotte was in the
congregation . After the service I asked the vicar why he had used the name Charlotte when
referring to my mother his reply was the undertaker gave him the information . All this happened 25 years ago - and it galls me still. I have no doubt the Good Lord knew who the vicar was referring to even if the lo*** undertaker was uncaring in the matter.
funeral the kindly vicar who conducted the service kept referring to her as Charlotte (her second
name) a name she never used. I might add her sister whose name was Charlotte was in the
congregation . After the service I asked the vicar why he had used the name Charlotte when
referring to my mother his reply was the undertaker gave him the information . All this happened 25 years ago - and it galls me still. I have no doubt the Good Lord knew who the vicar was referring to even if the lo*** undertaker was uncaring in the matter.
John
My husband was diagnosed with vascular dementia and Alzheimer’s in 2014. He passed away in 2022, a few months before our 55th wedding anniversary. Over those eight years I lost him bit by bit, first it was short term memory, then inability to do routine things like washing and dressing. In his last four years I had to keep the outer doors locked as he would try to go looking for his mother, who had died when he was 19. I had to hide things as he could harm himself, like drinking a bottle of mouthwash and eating the pot pourri. But the last two years saw a change in personality. He became verbally and physically abusive- a completely different person. So sad to see. Eventually, after several falls, he ended up in hospital and then went into a dementia home for a few weeks until he passed away.
Joy
My wife Dorothy for 50 years was diagnosed in 2020 with Vascular Dementia , i had a carer come in the mornings to wash and dress her, rest of the time i cared for her but i must admit with a heavy heart i did not find it easy, 2023 Dorothy went into full time care, to be honest i just could not cope anymore, Dorothy settled from day one, i visit regular and she still knows me, but she has no idea where she is , there is now very little communication between us and it hurts me greatly to see her like that now, i say to myself many a time what on earth has she done to deserve this awful illness, my heart goes out to everyone on this horrible illness.
William
I consider my self as a lucky sod living with a mild form of Dementia (mild cognitive impairment ) I have had two diagnosis one in the pandemic of Alzheimer's. I was coping well I thought I was.But the black clouds were gathering I had abreak down and spent 5 and1/2 weeks I a mental health ward.Then the diagnosis was change to MCI
David
My lovely mum has alzheimers and I've had to fight very very hard to keep her at home with care after she had to sell everything to pay for care before hand.She was a very outgoing lady who had her businesses from age of 17 till needed be sold for care at age 86.
Clare
My husband Trevor was 59 when he was diagnosed with Parkinson’s and we both thought that was ok we could cope with that unfortunately 6 years later he was diagnosed with Lewy Bodies Dementia from then on things got progressively worse he was doing things like emptying the garden shed and spreading it all over the garden , after a while he was having hallucinations at night and hardly sleeping at all, I had carers come in at 6-30am until 9.30 am so I could get 3 hours sleep.unfortunately when he was 70 I could not cope anymore and we found a care home that would take him as a lot of care homes don’t know much about Lewy bodies, I went every day to see him and feed him his lunch,
he gradually got worse and was bedridden in the end and weighed about 6 stone. He passed away in October 2022 not knowing any of his family you loose your loved ones over and over. We had been married, 55 years. What a sad end.
he gradually got worse and was bedridden in the end and weighed about 6 stone. He passed away in October 2022 not knowing any of his family you loose your loved ones over and over. We had been married, 55 years. What a sad end.
Sandra
I looked after my beloved mother for 6 years, she was diagnosed with dementia in 2016 and in 2018 she needed to be kept an eye on so I gave up my job to take of my beautiful mother and I have no regrets at all giving up my life to ensure my mother received the best care possible and coming from a medical background I applied what I knew to my mother's care. Sadly my beloved mother passed away September 2024 and I was with her till the end in her home. Her passing has had a profound affect on me. The government need to increase carers allowance,after all carers save the government thousands of pounds a year by caring for their loved ones themselves. The government need to fund dementia research much more than they currently do and any new approved dementia medications should be available on the NHS for dementia patients sooner rather than later,we should not have to wait years before it's available to patients suffering from this dreadful disease.
Angela
My mum was diagnosed with vascular dementia 10years ago. It was devastating to watch her decline from a bright intelligent person who did crosswords everyday. Who did jigsaw without the picture and upside down because she said it was more of a challenge. To a person who no longer could speak clearly and who no longer knew who I was. I took care of her at home until it became impossible to watch her 24hrs a day. It broke my heart to have to put her in care after 3 years of struggling with her at home. I felt like I had abandoned her. She passed away 1year and a half ago. I felt sad and relieved at the same time because I knew that she no longer wanted to live in this way. I still think of her everyday and wonder if I did everything I could for her. The guilt I felt when I took her to the care home is still with me. I still jump when the phone rings thinking for a moment that it's the care home telling me she has fallen or is sick. I miss her everyday and pray that she knew how much I loved her.
Jennifer
My first experience of dementia was when my mother was diagnosed with early onset at the age of 57 years old. She died in her 66th year of hypertensive heart disease.
During this time I was married with two young children. There was no real help for either dementia sufferers or those caring for them. Although my mother didn’t live with us full time, it was a nightmare when I had her to stay as I had to bath her and watch her every moment of the day.
I’m currently in telephone contact with my brother-in-law who was diagnosed with Alzheimer’s approximately two years ago. He has a live-in carer. He’s unable to hold a meaningful conversation on the phone although he recognises my voice. His physical needs are being taken care of but wasn’t encouraged to walk and now requires a wheelchair. He isn’t taken out in the fresh air enough or mentally stimulated, watching tv all day.
Sorry I don’t have a picture to upload.
Renee
During this time I was married with two young children. There was no real help for either dementia sufferers or those caring for them. Although my mother didn’t live with us full time, it was a nightmare when I had her to stay as I had to bath her and watch her every moment of the day.
I’m currently in telephone contact with my brother-in-law who was diagnosed with Alzheimer’s approximately two years ago. He has a live-in carer. He’s unable to hold a meaningful conversation on the phone although he recognises my voice. His physical needs are being taken care of but wasn’t encouraged to walk and now requires a wheelchair. He isn’t taken out in the fresh air enough or mentally stimulated, watching tv all day.
Sorry I don’t have a picture to upload.
Renee
Renee
My Mother was diagnosed with dementia and passed way with it after 6 years. For the last 9 months she did not recognise me. I found this very hard and then my sister was diagnosed with it. She lost the ability to walk and talk before passing away. My fear is now - when will it be my turn??
Lynne
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?