Dementia Support Line
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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 wife of 60 yrs Brenda was diagnosed with dementia 8 years ago, it started with failing memory, getting up to get something and forgetting what she had got up for,...
My lovely Nan passed away in 2020 in a dementia care home. It was really tough to see someone who had gone from being the chattiest person alive to drawing inwards....
My Father had Alzheimer’s for 7 years and I helped my mum care and look after him and her . After he passed my mum then was diagnosed with Autism and Dementia. She...
Mum had visited the dr several times since 2015...
A diagnosis of Altzeimers dementia for my husband on...
I can't watch. Just reading the comments made me cry. We lost mum in 2016. She had Parkinsons but died of something else before she could no longer care for herself....
My mother had dementia in her 80s and it was heart rending for my Dad ,my brother and myself.We had to place Mam in a home because it became unsafe to have her at home...
My Nanny is the most wonderful lady- with the most...
When i was little i used to love visiting my great aunt (even though she wasnt family, she adopted my grandad as she couldn't have her own children) so all the family...
Wish there was more support & help for carers.
More...
My incredible Mum has frontal temporal lobe dementia. The devastating impact of the diagnosis ripples through our family in everything that we do. Even now after six...
My mum has vascular dementia. She had a series of mini strokes in 2020 and was diagnosed. My mum can no longer walk, has trouble talking, can not feed or take care of...
my wife of 60 yrs Brenda was diagnosed with dementia 8 years ago, it started with failing memory, getting up to get something and forgetting what she had got up for, we both put this down to old age. As time progressed she was unable to cook a meal or carry out basic household chores, i took over, shopping ,cooking, cleaning etc. We then entered what i term the painful stage where she would put her coat on because she wanted to go home, the home Brenda remembered from her child hood. then there were days she did not know me, i would give her a cuddle and tell her I loved her and ask if she still loved me, the painful reply on occasions was how can i love you i don't know you we have only just met. on the 14 may Brenda had a fall and was hospitalized, on the 15 June I was arranging her funeral.
we both knew it would happen some day, but so quick it broke my heart, I tell myself she is free of pain, frustration, dementia
and with loved ones. I talk to her every day as I tell myself she is not dead but at a place I cannot access yet. I could go on about her fear of getting a bath or shower, of having to help her get dressed/undressed, giving her bed baths to help her keep clean, but 250 words would not be sufficient. this illness is far worse for the carer as you see what is happening but cannot say so as to avoid upsetting her. the night she passed away I gave her a kiss and held her hand, she knew someone was there but I don't think she knew it was me. that's the painful part she did not know I was there and that I loved her to the end.
we both knew it would happen some day, but so quick it broke my heart, I tell myself she is free of pain, frustration, dementia
and with loved ones. I talk to her every day as I tell myself she is not dead but at a place I cannot access yet. I could go on about her fear of getting a bath or shower, of having to help her get dressed/undressed, giving her bed baths to help her keep clean, but 250 words would not be sufficient. this illness is far worse for the carer as you see what is happening but cannot say so as to avoid upsetting her. the night she passed away I gave her a kiss and held her hand, she knew someone was there but I don't think she knew it was me. that's the painful part she did not know I was there and that I loved her to the end.
GEOFFREY
My lovely Nan passed away in 2020 in a dementia care home. It was really tough to see someone who had gone from being the chattiest person alive to drawing inwards. But we were so lucky to find a care home for her that specialised in dementia, with carers who would play table tennis with Nan and get to know her and her needs. Through this hard time, I knew that however emotional a time it was for us - she was being looked after as best as we could have hoped. Some of the care staff came to her funeral and that meant the world after months of not being able to see her during Covid. I want everyone to have access to that level of care - it doesn't stop the grief of dementia but it certainly put us at a level of ease. I would like Government to prioritise making this level of care accessible through care workforce training and crucially affordable. We had to sell my Nan and Poppa's house to fund her care.
Kathleen
My Father had Alzheimer’s for 7 years and I helped my mum care and look after him and her . After he passed my mum then was diagnosed with Autism and Dementia. She initially was in her own home and cared for by me her symptoms were complex after 3/4 years she had to go into a dementia care home I was stlll her carer managing everything. Her illness was 11 years . Apart from dementia and Alzheimer’s she latterly developed bowel cancer and sepsis . I’m registered disabled and my husband now is my carer .she passed last November and I thought I had already gone through a form of bereavement but am really struggling now with her loss . Plus the relationship with the care home , their support to her and me has stopped and now I feel left utterly devastated with no real emotional support . Certainly not from GP.
Watching two parents with this is beyond words to live with and you never feel you did enough to help even though it was 24/7.
People think once someone’s goes into a care home it’s easier it’s not . Felt I had to be hyper vigilant as advocate for her as she had no understanding of anything .
I wish the social care were more focused on how hard this is . How the government could help people who HAVE TO SELL THEIR HOMES to pay for care after working hard .
As carets we are invisible in the system as are those who have Alzheimer’s and no voice to speak for them be it family or friend .
My health as I’ve said is now irreparably bad.
People may not die from Alzheimer’s itself but the illnesses that occur during this like my mum who died an agonising death from sepsis need to be talked about .
Both my parents had extreme aggression physical and emotional with Alzheimer’s which was and did become dangerous for their safety and family.
One sees adverts on people with Alzheimer’s but the strength of the aggressive change is never addressed .
More funding and listening by government adult social care is vital .
This hideous disease impacts all .
My dad was 63 when diagnosed the age I am now my mother 73- this too feels like a ticking time bomb and the future feels terrifying.
Watching two parents with this is beyond words to live with and you never feel you did enough to help even though it was 24/7.
People think once someone’s goes into a care home it’s easier it’s not . Felt I had to be hyper vigilant as advocate for her as she had no understanding of anything .
I wish the social care were more focused on how hard this is . How the government could help people who HAVE TO SELL THEIR HOMES to pay for care after working hard .
As carets we are invisible in the system as are those who have Alzheimer’s and no voice to speak for them be it family or friend .
My health as I’ve said is now irreparably bad.
People may not die from Alzheimer’s itself but the illnesses that occur during this like my mum who died an agonising death from sepsis need to be talked about .
Both my parents had extreme aggression physical and emotional with Alzheimer’s which was and did become dangerous for their safety and family.
One sees adverts on people with Alzheimer’s but the strength of the aggressive change is never addressed .
More funding and listening by government adult social care is vital .
This hideous disease impacts all .
My dad was 63 when diagnosed the age I am now my mother 73- this too feels like a ticking time bomb and the future feels terrifying.
Karen
Mum had visited the dr several times since 2015 worried about personality changes and struggling to learn new things at work & was treated for depression, being in her mid 50’s. By 2019 she was terrified, knew what was coming without a diagnosis. It took until November 2019 for a correct diagnosis. There was no pathway, no help, no hope! We were alone, with Covid following rapidly. The “post diagnostic support” didn’t materialise in anything but phone calls which were useless. We’ve had to fight for every help. She’s in a home now, which we had to beg to get after managing at home as a family, living with the stranger wearing our mums skin. I wish the govt realised our people are loved, and deserve more.
Lynn
A diagnosis of Altzeimers dementia for my husband on 04/10/2024, has had a massive impact on close and extended family, including friends. Hindsight tells me it started many years ago, with a significant impact on our family finances, becoming in debt, with financial mistakes made along the way, forcing the need to sell the family home. Before the diagnosis it had a huge impact on my mental health, forcing me to reach out to my very understanding GP, and requiring both medication for depression and anxiety, that had me in an extremely dark place, never experienced before in my almost 70 years. The possible consequences and need to access the NHS from here on in, will be a significant factor, and social care in the future. This physical disease process brings with it enormous health and financial costs to all concerned, and robs everyone of not only their memories, but a very challenging life, which is why research is essential.
Rosamund
I can't watch. Just reading the comments made me cry. We lost mum in 2016. She had Parkinsons but died of something else before she could no longer care for herself. It was awful seeing my very independent, intelligent mum fade. Sadly, my dad had dementia (suspected alzheimers) which got significantly worse once she passed. He died at home, in 2019 after spending his final year in bed with 24 hour care. He was very confused, angry and scared for much of that year. We spent a lot of that precious time fighting social care and the NHS to get the help he needed, instead of being with him. (I lived 120 miles away and I work) They never decided what dementia it was. He was too disabled to tolerate all the examinations and brain scans. He got very distressed in hospital. It was awful. I will never forget the fear in his eyes as I held him close. I was and still am devastated by his death. I'll never get over the feeling that I should have done more and been there more often.
I wish government would just fund care no matter what was needed and stop all the issues with the NHS and social care who both try to avoid paying for everything. We need one budget. Famies should not have to spend ridiculous amounts of time to get even basic support.
I wish government would just fund care no matter what was needed and stop all the issues with the NHS and social care who both try to avoid paying for everything. We need one budget. Famies should not have to spend ridiculous amounts of time to get even basic support.
Elizabeth
My mother had dementia in her 80s and it was heart rending for my Dad ,my brother and myself.We had to place Mam in a home because it became unsafe to have her at home as she used to do things like leave the oil on and it used to catch fire.She went from being the glue that held everyone together to a shell of her former self.It took a lot of getting used to and you never really get used to it,although there are some unintentionally funny moments which help slightly to take away some of the sadness.At the end she forgot how to swallow and it wasn’t long after that she passed away.It sounds harsh to say but the main feeling is of relief that she didn’t have to suffer any more along with a massive sadness.
Mark
My Nanny is the most wonderful lady- with the most wonderful smile, hat and hair! She is basically famous in our little town in Northampton and everyone who knows her loves hers as much as we do! Before lockdown- she was still working in her 70s as a Drama and Music practitioner. Her most adored lessons were her baby music and massage sessions which always had a waiting list. Sadly, lockdown meant she could no longer work and we began to see a change. Her quick wittiness and sass was replaced by confusion and agreement. Her want to go out and do things dropped- she would prefer to sleep and stay in. She even began to struggle to get dressed- which was strange as before her love for glamorous outfits kept her busy choosing everyday. Suddenly she couldn’t even make a cup of hot water- which was her number one drink. Her health deteriorated and it felt like almost overnight she was diagnosed with Alzheimers. We knew this would be the case but it still made us all sad as we realised what this meant long term. At times, my Nanny was still there- however, it was almost as if the sparkle behind her eyes was fading as the days went by. This year, over the summer it became apparent that her loving husband of 52 years (who was also of ill-health) could no longer look after her. We looked into care homes- another moment that filled us with worry and fear. My Nanny and Grandad had lived in their house together since before I was even born. The thought of taking my Nanny away from there and leaving my Grandad alone broke us all but we knew it was the best thing to do. This week having moved into a friendly care home- we are hopeful my Nanny will thrive alongside others with the same disease and with the extra care she desperately needed. We are not sure what the future holds but we do know that Alzheimer’s is a terrible disease that sees a loved one change and become a shell of themselves. If my Nanny could see herself now she would be horrified by what she has become- but luckily she is unaware. For now, our main aim as a family is to try and continue creating happy memories whilst ensuring she is as comfortable as possible as this illness continues. I wish that the government saw Alzheimer’s as the crisis it really is- families should not be going through the pain and hurt that this disease brings at such a large scale. We need to continue fighting to find ways to help those who are diagnosed so they can deal with it in a more dignified way- not just for my Nanny but for everyone who is dealing with this situation.
Sasha
When i was little i used to love visiting my great aunt (even though she wasnt family, she adopted my grandad as she couldn't have her own children) so all the family loved her.
She always treated us with tea and biscuits. But then she got confused. She caught the kitchen on fire putting the electric kettle on the stove thinking it was an old fashion one.
She got angry and confused. My parents tried letting her live with us but she got angry. She movedinto a care home. But sadly passed away soon after. Her home had to be sold to fund her care and her funeral. Im grown up now. Im an author. My book Jo's hidden secrets raises money for a domestic violence charity and post natal depression charity who helped me at my darkest times. But i miss my great aunt. Especially as her home was sold to people who built homes on her land and house.
I fundraise and donate mental health/,,domestic violence packs to high schools and libraries in my spare time to help me cope with my mental health issues.
She always treated us with tea and biscuits. But then she got confused. She caught the kitchen on fire putting the electric kettle on the stove thinking it was an old fashion one.
She got angry and confused. My parents tried letting her live with us but she got angry. She movedinto a care home. But sadly passed away soon after. Her home had to be sold to fund her care and her funeral. Im grown up now. Im an author. My book Jo's hidden secrets raises money for a domestic violence charity and post natal depression charity who helped me at my darkest times. But i miss my great aunt. Especially as her home was sold to people who built homes on her land and house.
I fundraise and donate mental health/,,domestic violence packs to high schools and libraries in my spare time to help me cope with my mental health issues.
Emma Louise
Wish there was more support & help for carers.
More ways to give those looking after loved ones 24/7 a break. I cared daily for my lovely father for 4 years. We had good days and bad.
Dementia changes the sufferer and most definitely the family. The one thing that helped tremendously was music my dad played music daily. It's a heartbreaking illness the most awful thing was my dad would forget mum had passed and would ask frequently where was she I would pretend for his sake she was out but there would be times when I could not fool him he would remember and his reaction was one of distress like he had just learned she had gone.
Unfortunately when he started wandering he was deemed a risk and had to be placed in a care home. He was there from Oct 2019 to may 2021. He fell no explanation as to why or how
And 5 weeks after passed away he fractured his femur and had surgery. People with dementia have not got a voice they need loved ones to speak up for them. I watched and heard him suffer this was vocal and it's the worst experience of my life. I have pictures of him I love but some all you see is the dementia
Blank expressions. Cognitive workshops are a must for people with dementia social groups with activities a place where you can safely leave your loved one and have a coffee chat with other people who care. It's vital to talk express your thoughts feelings get help
Everyone needs some help if they have a loved one with dementia. The government promised social care funding where is it so many people struggle. I hope there can be a brighter future
And help for those suffering. As hard as it was it was a privilege to care for a lovely caring kind dad that I'm so very proud of.
More ways to give those looking after loved ones 24/7 a break. I cared daily for my lovely father for 4 years. We had good days and bad.
Dementia changes the sufferer and most definitely the family. The one thing that helped tremendously was music my dad played music daily. It's a heartbreaking illness the most awful thing was my dad would forget mum had passed and would ask frequently where was she I would pretend for his sake she was out but there would be times when I could not fool him he would remember and his reaction was one of distress like he had just learned she had gone.
Unfortunately when he started wandering he was deemed a risk and had to be placed in a care home. He was there from Oct 2019 to may 2021. He fell no explanation as to why or how
And 5 weeks after passed away he fractured his femur and had surgery. People with dementia have not got a voice they need loved ones to speak up for them. I watched and heard him suffer this was vocal and it's the worst experience of my life. I have pictures of him I love but some all you see is the dementia
Blank expressions. Cognitive workshops are a must for people with dementia social groups with activities a place where you can safely leave your loved one and have a coffee chat with other people who care. It's vital to talk express your thoughts feelings get help
Everyone needs some help if they have a loved one with dementia. The government promised social care funding where is it so many people struggle. I hope there can be a brighter future
And help for those suffering. As hard as it was it was a privilege to care for a lovely caring kind dad that I'm so very proud of.
Teresa
My incredible Mum has frontal temporal lobe dementia. The devastating impact of the diagnosis ripples through our family in everything that we do. Even now after six years every single day I miss her. I want to ask something or tell her something but she doesn’t know who I am. She’ll never get to know so many things that would have made her so happy. It’s robbed us all and left a shell in her place.
Lack of understanding and resources mean care is horribly inadequate so getting support is stressful and the worry never ends. It’s like a prison sentence. There is no time or resource in care homes for anything other than basics so people are left isolated, anxious and unstimulated which I’m sure makes life harder for patients and their families.
I wish people knew that it’s not just being a bit forgetful, it’s losing every bit of someone bit by bit in the most slow and painful way. From forgetting words to how to do simple tasks to losing your personality. It’s isolating for families because it’s all consuming and people don’t know what to do or say so they back away. Even if they aren’t who you remember and they don’t know you you can still brighten their day by sitting and talking or just listening and giving the carer company or respite. You can’t catch dementia and you can still help them.
Lack of understanding and resources mean care is horribly inadequate so getting support is stressful and the worry never ends. It’s like a prison sentence. There is no time or resource in care homes for anything other than basics so people are left isolated, anxious and unstimulated which I’m sure makes life harder for patients and their families.
I wish people knew that it’s not just being a bit forgetful, it’s losing every bit of someone bit by bit in the most slow and painful way. From forgetting words to how to do simple tasks to losing your personality. It’s isolating for families because it’s all consuming and people don’t know what to do or say so they back away. Even if they aren’t who you remember and they don’t know you you can still brighten their day by sitting and talking or just listening and giving the carer company or respite. You can’t catch dementia and you can still help them.
Abigail
My mum has vascular dementia. She had a series of mini strokes in 2020 and was diagnosed. My mum can no longer walk, has trouble talking, can not feed or take care of herself.
She is primarily looked after by my dad who is in his 80s and me who works from their home Monday to Friday whilst also taking care of my mum. I am lucky to have employers who let me work from home.
My sister then feeds my mum on a Saturday and Sunday.
I love my mum dearly but I am not sure how much of her is left. I get the odd glimmer but they are getting so few and far between.
My dad will not allow carers into the house so it is pretty much him and me most days making sure mum is safe.
I am exhausted most of the time as I also am a single parent so come home to deal with my sons and my own house.
It is just like the advert that says they die over and over again. That is exactly how it feels.
She is primarily looked after by my dad who is in his 80s and me who works from their home Monday to Friday whilst also taking care of my mum. I am lucky to have employers who let me work from home.
My sister then feeds my mum on a Saturday and Sunday.
I love my mum dearly but I am not sure how much of her is left. I get the odd glimmer but they are getting so few and far between.
My dad will not allow carers into the house so it is pretty much him and me most days making sure mum is safe.
I am exhausted most of the time as I also am a single parent so come home to deal with my sons and my own house.
It is just like the advert that says they die over and over again. That is exactly how it feels.
Michelle
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?