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.
I have had Somantic Dementia for six years. I use a...
My husband was diagnosed with vascular dementia in...
He stares at with a blank look on his face, no matter...
My husband Brian was diagnosed in 2021 he had been showing signs of depression and unusual symptoms since 2018 but I didn’t know what was causing him to behave in...
My husband Cyril was finally diagnosed with Vascular Dementia in 2018, after he had been struggling with memory problems for some years. I am 81 and his sole carer. He...
it is so sad to to see my 75 old neighbour getting this terrible disease, but at least he has a good care team, coming to his home and a good social work, and i make...
My mum lost her battle to Alzheimer’s in 2019 when...
My wife was diagnosed with Dementia earlier this year. And, whilst all the professionals had done their tests and examinations, I still firmly believe that the cause...
I was 65 years old when I was diagnosed with early...
My husband was diagnosed in 2015 with the condition...
My husband was diagnosed with dementia in the summer...
Dad was diagnosed with Alzheimer’s in February 2020...
I have had Somantic Dementia for six years. I use a system to help me remember bits, along with the lovely help on my phone. Like others I sleep a lot, but still play Bowls and Snooker comps etc. What amazes me is that after the six years I still have not managed to meet another person with dementia. Juìst their helpers. Ouch.
JOHN
My husband was diagnosed with vascular dementia in 2017 after three years of slowly loosing touch with the world. Over the next three years It took everything from him. His aggression became so bad he was sectioned in March 2020 and caught Covid within two weeks in hospital and died. I have just started to get my life back to some semblance of order but it’s so hard without him
Jacqueline
He stares at with a blank look on his face, no matter I feeling alone even though I have family. I ask him every day if he still loves me, just a nod means a lot to me. I consider myself luck as he’s not violent or abusive.
Christine
My husband Brian was diagnosed in 2021 he had been showing signs of depression and unusual symptoms since 2018 but I didn’t know what was causing him to behave in the way he was he complained that he didn’t feel well dizzy ness and forgetful ness started we had a big family holiday to celebrate my 70 birthday and he wasn’t quit himself but still enjoyed it then after the diagnosis in 2021 he was prescribed tables to slow it down and we had visits to the hospital memory clinic till 2022 when she said he had deteriorated too far and she couldn’t help any more and the tablets were to continue but hadn’t slowed the illness down we were the under a special doctor from different hospital and nurses to visit but it just got worse and worse he shouted and screamed had delusions stoped going to bed and wandering all night fall over lots of paramedics call hospital admissions he stopped speaking any sence did know me ore our kids I was worn out had a week of respite in local home in 2023 then 2 months later he fell badly hitting the fireplace and paramedics came and said u can’t vary on so with the help of social workers and paramedics took him. too local care home in April 2023 he is still there but detoriated more and more he has lost so much weight he has lost all use of legs he has to be lifted up out of bed he can’t talk he’s double i continent can’t hold a cup I visit every other day but he sometimes smiles sometimes not he can’t speak at all I love him so much he was my sole mate we have been together for 53 years he was a area manager for a shoe company before he retired we travelled together and had 3 kids 5 grandkids he would be horrified to know what happened there is no dignity in this illness it just took him away and left a non functional body behind
Carole
My husband Cyril was finally diagnosed with Vascular Dementia in 2018, after he had been struggling with memory problems for some years. I am 81 and his sole carer. He is 91. He has now reached the stage when he relies on me for 90% of daily living requirements. I wake him. he will go to the bathroom but does not remember how to put the plug into the washbasin. He leaves the water running constantly. I lay out his clothes in the right order to put on. I bath him once a week. He sometimes refuses. I have to stay with him and help with washing, drying etc. He does not know where anything is kept in the house. He cannot make a cup of tea or a sandwich. He cannot go out without me as he gets lost. and when we come home he will look at his shoes and ask if we have been out He can stand for ages at the window looking out. He gets very depressed. He likes talking about his youth but it's all mixed up. He remembers his children and grandchildren but sometimes forgets their names. 193 I try my best to keep his mind occupied. He likes bus rides. We go every afternoon for some hours. He has a digital photo frame with many photo's on it, as well as many photo albums. He still likes music and we sometimes shuffle together to a nice tune. My husband of 60 years.
Johanna
it is so sad to to see my 75 old neighbour getting this terrible disease, but at least he has a good care team, coming to his home and a good social work, and i make sure i visit him every day to make us a tea, what people don't want is self isolation with this disease, He stands looking out of his flat windows for his care team 4 time's a day,and at 4.30pm when i visit him, the care team try and keep the same time's, most day's that help's, and i go to visit him at the same time every day,
My mum lost her battle to Alzheimer’s in 2019 when my son was 12 weeks old. Throughout my pregnancy, every week when I visited my mum it was like telling her for the first time I was pregnant even with a big bump. Seeing the joy on her face was priceless and the conversation that ensued after.
In that time I also experienced my Mum not recognising who I was, which was absolutely heartbreaking.
Alzheimer’s is such a cruel disease to experience seeing your loved once disappear even though they are still, on the outside, the person you know & love.
To anyone who is experiencing a loved one or friend with Alzheimer’s I’m sending you love and care as I know it’s blooming hard 💙
In that time I also experienced my Mum not recognising who I was, which was absolutely heartbreaking.
Alzheimer’s is such a cruel disease to experience seeing your loved once disappear even though they are still, on the outside, the person you know & love.
To anyone who is experiencing a loved one or friend with Alzheimer’s I’m sending you love and care as I know it’s blooming hard 💙
My wife was diagnosed with Dementia earlier this year. And, whilst all the professionals had done their tests and examinations, I still firmly believe that the cause of this dreadful condition began when she had an operation to treat an hernia and in the course of this procedure she was subjected to the worst possible senario when the surgeon told me that she would have difficulty getting her breath as he had compromised her diaphragm.
Since then she has experienced this lack of breath not realising that this would lead to a buildup of CO2 in her system that eventually led to hospitalisation on three occasions.
At each occasion I was given the’end of life speech’ and told not to expect her survival.
But she was a fighter and pulled through only to be left with a life of sleeping with a ventilator and the loss of a part of her brain that deals with memory.
Hence today she is diagnosed with Dementia and I spend most of my time looking after her needs.
I still wonder today if she hadn’t had the hernia operation would she be the same person I married more than fifty years ago.
Since then she has experienced this lack of breath not realising that this would lead to a buildup of CO2 in her system that eventually led to hospitalisation on three occasions.
At each occasion I was given the’end of life speech’ and told not to expect her survival.
But she was a fighter and pulled through only to be left with a life of sleeping with a ventilator and the loss of a part of her brain that deals with memory.
Hence today she is diagnosed with Dementia and I spend most of my time looking after her needs.
I still wonder today if she hadn’t had the hernia operation would she be the same person I married more than fifty years ago.
I was 65 years old when I was diagnosed with early onset Alzheimer’s.
Despite living an active life being an operational firefighter & loving sport I was not in the best of health but this latest news was a real shock to the system despite knowing something was affecting my memory & causing me to lose my balance & regularly dropping items.
I am lucky to have a supportive wife & family but despite accepting the news it is hard to accept.
I try to set things in place & use technology like word documents to assist my failing memory & also keep mentally active.
I regularly take part in a program run by Derbyshire Healthcare NHS Foundation Trust as an ‘Expert Patient with Dementia’ where we openly discuss how my diagnosis affects my life & daily living in order to assist in the Drs development to hopefully help others in the future and have also participated in many surveys highlighted by the Alzheimer’s Society.
I have not tried to hide my diagnosis from others & think this is advantageous as they are very supportive.
I try to live life to the full ..
Despite living an active life being an operational firefighter & loving sport I was not in the best of health but this latest news was a real shock to the system despite knowing something was affecting my memory & causing me to lose my balance & regularly dropping items.
I am lucky to have a supportive wife & family but despite accepting the news it is hard to accept.
I try to set things in place & use technology like word documents to assist my failing memory & also keep mentally active.
I regularly take part in a program run by Derbyshire Healthcare NHS Foundation Trust as an ‘Expert Patient with Dementia’ where we openly discuss how my diagnosis affects my life & daily living in order to assist in the Drs development to hopefully help others in the future and have also participated in many surveys highlighted by the Alzheimer’s Society.
I have not tried to hide my diagnosis from others & think this is advantageous as they are very supportive.
I try to live life to the full ..
My husband was diagnosed in 2015 with the condition ,he passed away in 2020. I worked full time and cared for him alongside my job. I had to work, there was no support financially for me to stay at home with him. Moving the retirement age meant I had to carry on working.
Initially he coped well, as time moved on and his dementia progressed I had to help him get washed, dressed, I came home every dinnertime. We were due for carers to come in to help when COVID hit and I was at home with him until he passed away in August 2920.
I wish the Government would ensure that more funding was given to supporting families living with dementia.
Initially he coped well, as time moved on and his dementia progressed I had to help him get washed, dressed, I came home every dinnertime. We were due for carers to come in to help when COVID hit and I was at home with him until he passed away in August 2920.
I wish the Government would ensure that more funding was given to supporting families living with dementia.
Cath
My husband was diagnosed with dementia in the summer of 2021. We moved house the following year to be near our daughter and her family, which - although it was a great upheaval - was absolutely the right decision. Our daughter and her husband are wonderfully helpful both emotionally and practically, and it gives my husband great pleasure to see our two young grandsons so often. Our two adult sons and their families live some distance away, but they too are immensely supportive. Nonetheless, as my husband's illness progresses, life is sometimes almost impossibly difficult. My husband made some good decisions about financial savings, and so we are self-funding with regard to care. We have a good team of day-carers who visit three mornings a week to keep my husband company while I get on with jobs (including my part-time academic work). But the three attempts at respite care - one in a new residential home and two live-in carers through different agencies - have been disastrous. The carers simply did not have enough experience or expertise to manage my husband's behaviour properly. Added to which, we are not receiving the care and support from the GP and adult social care to which we are entitled. Despite my many efforts by telephone and letter, we are being blocked from accessing what I know we are supposed to receive in terms of a care plan, a named professional to coordinate and review it, and some support for me as a full-time carer. I sometimes feel utterly hopeless and angry about the way the system can abandon people in our situation. The Alzheimer's Society is a beacon of hope and support in this situation - but we need practical action.
Lesley
Dad was diagnosed with Alzheimer’s in February 2020 just before lockdown. We knew something wasn’t right but we didn’t know what. He was living independently but needed extra support and this grew and grew. In February 2023 my husband, daughter and I moved in to Dads home to care for him and in November that year I left my job of 23 years to care for dad full time. We have built Dad a care cabin in the garden so we all have our own space. It’s purpose built and will adapt as his needs change and we can hopefully keep him at home for as long as possible. Caring for dad is hard work alongside being a mother and wife but the hardest part is having to fight and shout for everything we need and for support. People living with all types of dementia need a voice and to not be forgotten. Dementia needs to be a priority and unpaid carers need to be heard. I am positive we can make dementia care better for all who have to encounter this heartbreaking disease.
Jen
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?