Dementia Support Line
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Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?
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Since my wife was diagnosed with Alzheimer's in 2013,...
I first started having seizures in 2014 but by 2019,...
My husband had Pneumonia back in early January 2014,...
Following 62 years of happy marriage Dementia took my wife following the 4 years of her knowing who i was during this time it is difficult to lead a normal life...
I have early onset Alzheimer’s and
i feel alone in my struggle to accept this - which is one of the hardest thing I have ever had to do.
I hold back on so much...
My husband has Dementia we met in 2000 and have been...
Dad developed early onset Alzheimer’s in his 50s. Over 10 years ago now. My siblings and I were all in our late teens early 20s. He closed down and never made his...
When my mum first went into a care home, my sister and I had an interview with a social worker to see if we could claim Continuing Health Care for her.
At this time...
I lost my mum last year to mixed vascular dementia....
My journey with Dementia is just starting.It is very...
Lost my partner Margaret to young onset alzheimers...
I wish there was more help for people with dementia...
Since my wife was diagnosed with Alzheimer's in 2013, my care for her has become almost all consuming. Every need has to be catered for and that is 24 hours a day.
Leaving her for a couple of hours increases her sense of anxiety and it is becoming impossible to even go for a haircut without a major upset.
I would like the Government to be aware that the real lack of Social Care in the Community, not only has an effect on the patient, but also impacts on the mental health of the rest of the family and of course the efficiency of the NHS.
Leaving her for a couple of hours increases her sense of anxiety and it is becoming impossible to even go for a haircut without a major upset.
I would like the Government to be aware that the real lack of Social Care in the Community, not only has an effect on the patient, but also impacts on the mental health of the rest of the family and of course the efficiency of the NHS.
Geoffrey
I first started having seizures in 2014 but by 2019, I was diagnosed with Alzheimer's Disease and then with Vascular Dementia. In the last 5 years one begins to noticed changes: memory, speech, not knowing what I am saying or what I have said. I also have two extremes the first is being emotional without cause it just suddenly happens. The other is my agitation and stress when I am in certain situations that I cant manage. This causes me to take off, go out without warning, then come home. My wife suffers as much as I do. No one is born a carer so what do they do.
I would just say, find something to do that gives you enjoyment (I play golf). I have moments when I just want to do my own thing. I have no ‘filter now’ so its best for me to relax when I can. I hope my story helps but remember it is not our fault so continue to enjoy life.
I would just say, find something to do that gives you enjoyment (I play golf). I have moments when I just want to do my own thing. I have no ‘filter now’ so its best for me to relax when I can. I hope my story helps but remember it is not our fault so continue to enjoy life.
Robert
My husband had Pneumonia back in early January 2014, but was not treated correctly so this infection gave him psychosis. Life was very strange, he did not sleep day or night, told anyone who would listen our most intimate part of our life, he used wake me up in the middle of the night, he was finally taken to hospital end January /February. He had a complete and utter melt down. He threatened me with a knife and threw things at me. Eventually we had friends, family, ambulance car man and ambulance men, plus police officers in my home. Emergency Drs would not come out to him so in the end they got the police surgeon to sedate him It took ages. This is where the nightmare began.
My gut told me he had dementia but never got that diagnosis for 6 years. He was taken to Berrywood after him driving hospital staff mad. He even tried to remove a very sick man’s fluid lines etc. once on Risperidone he calmed down and within hours was more himself. He came home after less than two weeks in Berrywood when they halved his dose! He was still very strange. He came back to his business where a calculator was a phone. Eventually we lost the business leaving me to do all the closing down! I managed to get him back in with the psychiatrist after several arguments and my GP was brilliant. Nevertheless they continued to try and get rid of him, he was just a number they wanted off their books. Let’s say they didn’t win that one! He was then diagnosed with Parkinson’s, he didn’t follow the normal so again they partially dismissed this. Eventually they did a Dat scan confirming Parkinson’s and also revealed he had Lewy Body Dementia. All these years he still saw things that were not there. They tried to get him to go to hospital but as one ambulance lady had said we won’t take Parkinson’s for drop in blood pressure because it is part of the disease.
Alan started to go to a day care place twice a week, stated he hated it but the photos show a different story! That was such a good thing.
One Monday morning in 2021 he had a fall, but he said he just fell to the ground, by this time the mental strain coupled with physical strain I was drowning, even though I had carers coming in. With the help of a good friend I got Alan into a care home, initially for respite, but after 24 hours they had to move him to a different section, needing more help. He went into this home on Wednesday afternoon 10th February and Saturday 13th 2021 at 23:40 he passed away. I am sure you can imagine the guilt I felt, doubting my decision! It has taken a while for me to come to terms with that. He died 20 minutes before our 29th wedding anniversary, and a week before my birthday.
There is so much I could write in much more detail so this is a brief outline of what happened. He at least passed away still knowing who we were for which I am very grateful. Losing a loved one to this awful disease is a bitter pill to swallow. Without the support of my daughters and a very good friend I am not sure I would have coped so well. I just kept reminding myself of the good times and if he asked the same question again and again I would just hold his hand.
This disease needs all the support and knowledge to be out there and available.
The photo I have chosen was taken 2 near Christmas 2020, he was smiling because he cheated so typical of him.
My gut told me he had dementia but never got that diagnosis for 6 years. He was taken to Berrywood after him driving hospital staff mad. He even tried to remove a very sick man’s fluid lines etc. once on Risperidone he calmed down and within hours was more himself. He came home after less than two weeks in Berrywood when they halved his dose! He was still very strange. He came back to his business where a calculator was a phone. Eventually we lost the business leaving me to do all the closing down! I managed to get him back in with the psychiatrist after several arguments and my GP was brilliant. Nevertheless they continued to try and get rid of him, he was just a number they wanted off their books. Let’s say they didn’t win that one! He was then diagnosed with Parkinson’s, he didn’t follow the normal so again they partially dismissed this. Eventually they did a Dat scan confirming Parkinson’s and also revealed he had Lewy Body Dementia. All these years he still saw things that were not there. They tried to get him to go to hospital but as one ambulance lady had said we won’t take Parkinson’s for drop in blood pressure because it is part of the disease.
Alan started to go to a day care place twice a week, stated he hated it but the photos show a different story! That was such a good thing.
One Monday morning in 2021 he had a fall, but he said he just fell to the ground, by this time the mental strain coupled with physical strain I was drowning, even though I had carers coming in. With the help of a good friend I got Alan into a care home, initially for respite, but after 24 hours they had to move him to a different section, needing more help. He went into this home on Wednesday afternoon 10th February and Saturday 13th 2021 at 23:40 he passed away. I am sure you can imagine the guilt I felt, doubting my decision! It has taken a while for me to come to terms with that. He died 20 minutes before our 29th wedding anniversary, and a week before my birthday.
There is so much I could write in much more detail so this is a brief outline of what happened. He at least passed away still knowing who we were for which I am very grateful. Losing a loved one to this awful disease is a bitter pill to swallow. Without the support of my daughters and a very good friend I am not sure I would have coped so well. I just kept reminding myself of the good times and if he asked the same question again and again I would just hold his hand.
This disease needs all the support and knowledge to be out there and available.
The photo I have chosen was taken 2 near Christmas 2020, he was smiling because he cheated so typical of him.
Gill
Following 62 years of happy marriage Dementia took my wife following the 4 years of her knowing who i was during this time it is difficult to lead a normal life without her but i believe if you except an afterlife it may be possible for a renewal of partnership when my life ends.
Kenneth
I have early onset Alzheimer’s and
i feel alone in my struggle to accept this - which is one of the hardest thing I have ever had to do.
I hold back on so much of my insecurities and concerns for the sake of my family ie my children who are devastated as they know they will lose their mother way before they should
I feel at times very unsupported and I also feel there is very very little support for families who also struggle with the diagnosis.
We need more support - more actual one to one support and some where and some one who has the time and experience of the condition that I can go to to rant off my concerns and most importantly to clarify the condition and my concerns to what I call as my nightmare illness
It’s Frightning and very scarey
i feel alone in my struggle to accept this - which is one of the hardest thing I have ever had to do.
I hold back on so much of my insecurities and concerns for the sake of my family ie my children who are devastated as they know they will lose their mother way before they should
I feel at times very unsupported and I also feel there is very very little support for families who also struggle with the diagnosis.
We need more support - more actual one to one support and some where and some one who has the time and experience of the condition that I can go to to rant off my concerns and most importantly to clarify the condition and my concerns to what I call as my nightmare illness
It’s Frightning and very scarey
Karen
My husband has Dementia we met in 2000 and have been together since we married for in 2021. My husband already had Dementia he was diagnosed the year before. He had been treated with Temporal Arthritis I thought that was it as he had been treated. Nothing was the same and I could tell this amazing man was forgetting things I had told him, at first I thought it was me with brain fog as I was going through the menopause but he was forgetting things like appointments or when we were going out. His family live in Scotland and we live in England so it is difficult being his only carer and working full time. Thank goodness I work from home and working is amazing. It is a little more complicated as he also has crohns and a heart condition I have to keep an eye on My family also live away my daughter is 1.5 hours away and my son is 2 he’s away. We have each other and friends give me a little light relief when they visit. It is something you just learn to live with on your own as I do not have any other help.
Joanne
Dad developed early onset Alzheimer’s in his 50s. Over 10 years ago now. My siblings and I were all in our late teens early 20s. He closed down and never made his wishes known to us about his future care, I think he was in denial, and I didn’t know how to ask him. Everyday there’s things I wish I could have asked him or found out about him before it was too late. He hasn’t recognised me since 2020 and I can no longer really recognise him. Music has been the only way we could connect for the last 4 years but sadly that too now has passed. He is completely immobile and non-verbal, I just really hope he doesn’t feel anything either. I am so worried he feels trapped alone and scared. I wish he could know just how loved and missed he is.
Natalie
When my mum first went into a care home, my sister and I had an interview with a social worker to see if we could claim Continuing Health Care for her.
At this time my mum was unable to stand or change her own position. She was doubly incontinent, had problems eating and was often completely non responsive. Apart from her dementia she had a catalogue of other health issues (COPD, heart valve disease, arthritis of the spine and all her joints, atrial fibrillation etc etc).
At the end of the interview, which was a very distressing meeting, I asked the social worker what her recommendations would be. She said she saw no reason why mum should not be returned to her own home with local authority carers visiting 4 times a day to toilet, wash, feed and turn her.
My sister and I were utterly shocked by this!
I said, are you telling me you think it’s acceptable for an old lady who can’t move, struggles to eat and doesn’t understand when she’s messed herself and puts her hands in it to be left alone for the majority of each day with visits from people who don’t know her and will be lucky if they have 20 minutes per visit to provide all the care she needs?
The social worker replied “thousands of people exist like that, why should your mum be any different”.
I’ll never forget that cutting remark. My sister and I cried all the way home. I have never felt so alone, deserted and helpless. That any social worker should even think such a thing, let alone say it, is an utter disgrace.
I know there are good social workers out there, thank goodness, and I hope others are lucky enough to have one fighting their corner. I felt like my heart had been ripped out 😢😢😢
At this time my mum was unable to stand or change her own position. She was doubly incontinent, had problems eating and was often completely non responsive. Apart from her dementia she had a catalogue of other health issues (COPD, heart valve disease, arthritis of the spine and all her joints, atrial fibrillation etc etc).
At the end of the interview, which was a very distressing meeting, I asked the social worker what her recommendations would be. She said she saw no reason why mum should not be returned to her own home with local authority carers visiting 4 times a day to toilet, wash, feed and turn her.
My sister and I were utterly shocked by this!
I said, are you telling me you think it’s acceptable for an old lady who can’t move, struggles to eat and doesn’t understand when she’s messed herself and puts her hands in it to be left alone for the majority of each day with visits from people who don’t know her and will be lucky if they have 20 minutes per visit to provide all the care she needs?
The social worker replied “thousands of people exist like that, why should your mum be any different”.
I’ll never forget that cutting remark. My sister and I cried all the way home. I have never felt so alone, deserted and helpless. That any social worker should even think such a thing, let alone say it, is an utter disgrace.
I know there are good social workers out there, thank goodness, and I hope others are lucky enough to have one fighting their corner. I felt like my heart had been ripped out 😢😢😢
Tina
I lost my mum last year to mixed vascular dementia. And she was a bit like the glue that held myself, my dad and my brother together and without her there it feels like there is nothing holding us together anymore. My dad and I looked after her at home for 9 months before she was moved to full time acute unit care. After being moved units and then with a lengthy hospital stay she was finally found a care/nursing home. But after such drastic deterioration she was only there for 2 weeks before her death. I would like the government to push for compulsory training for all hospital staff who come in contact with dementia patients so that no one is left to deteriorate like my mother did. I would also like the government to know that we don't just lose them once. Every time she got worse we felt like we were losing her all over again and to make bereavement counselling or even just someone at the end of a phone easier to access.
Cailtin
My journey with Dementia is just starting.It is very frightening and confusing.It seems to be slow in onset . My long term memory is mostly still intact but my short term memory only lasts a nanosecond.Sometimes people get impatient with me.it’s lovely wen peoplare nice .I have three children but the eldest has a treatable but not
Curable. Condition I don’t know who will go first .My youngest will only visit in emergencies. My middle one cares the most but she is a one parent family, her ex died . She has2 jobs and is mother to 2 grown boys , one is autistic. So she could do without me with Dementia ! I have other health conditions as well. I have just got a carer . I wish people knew that there are lots of different types of Dementia and it’s not a madness ITS AN ILLNESS ..
Curable. Condition I don’t know who will go first .My youngest will only visit in emergencies. My middle one cares the most but she is a one parent family, her ex died . She has2 jobs and is mother to 2 grown boys , one is autistic. So she could do without me with Dementia ! I have other health conditions as well. I have just got a carer . I wish people knew that there are lots of different types of Dementia and it’s not a madness ITS AN ILLNESS ..
Joy
Lost my partner Margaret to young onset alzheimers last year at the age of 62 after a seven year struggle
To watch her fight while still trying to raise awareness of this terrible disease with the knowledge of the outcome is bravery beyond belief
A sad loss to us all
Mark
To watch her fight while still trying to raise awareness of this terrible disease with the knowledge of the outcome is bravery beyond belief
A sad loss to us all
Mark
Mark
I wish there was more help for people with dementia and for the families.
I lost my grandad at the start of 2024, he battled dementia for about 6 years, we had no help from anyone.
We had to make the hard decision in 2023 to move him into fulltime carehome and from there he went drastically downhill.
I lost my grandad at the start of 2024, he battled dementia for about 6 years, we had no help from anyone.
We had to make the hard decision in 2023 to move him into fulltime carehome and from there he went drastically downhill.
Jade
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?