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My mum was diagnosed with Alzheimer's and vascular...
My Granda was diagnosed in 2017. However, that's basically where the information/assistance ended until the disease severely progressed. We were not advised what we...
My wife, Eve was diagnosed Approx' 11 years ago. Eve knew something was wrong and kept saying : I think I am loosing it: We went to our G.P. He referred us to an...
There was a lot of confusion and stress before having...
I was slightly confused and of course when u have Dementure
U r disbelieved in most things u say so it becomes difficult to express yourself or when u do people just...
My husband, Bill, was only 53 when I noticed things...
My lovely mum passed away in January 2011 from dementia, it was a dreadful time to see her go downhill over the years from being a capable lady and being to do most...
My father was diagnosed with Alzheimer's 10 years...
Everyone said “Oh you can live for years with...
We went through a 2 year period from seeking advice...
Well which story? My mother, mother in law and now my...
God bless those that care and help dementia sufferers...
My mum was diagnosed with Alzheimer's and vascular dementia when she was 78.
It didn't come as a shock as she had symptoms for years and it was only after a fall in her home and a stay in hospital that she eventually got a referral to a memory clinic. After her diagnosis I thought we would get some form of help as she lives on her own with help from myself and my sister.
Life was getting increasingly difficult which was complicated by my mum's alcohol addiction. I spoke to her GP about care but was told non was available. Then one night she drank a full bottle of whiskey and ended up back in hospital. It was only then that social services got involved and arranged in house care which was such a relief.
My mum, as I knew her, has gone but there are still sparks there. Her love of Elvis comes through when she sings along to his songs and she can still point out the place where my late father fished from at the local reservoir.
I feel that everything has been a struggle.
Since her diagnosis her GP hasn't even reviewed her once. If she had been diagnosed earlier then life could have been a lot different as I wouldn't have felt like everything was a fight on her behalf and perhaps she may have started treatment to slow the Alzheimer's, at diagnosis we were told it was pointless.
Having care, however, has enabled me to have a mother - son relationship again, which at her age is more precious than anything. Oh she hasn't had a drink for over 12 months now
It didn't come as a shock as she had symptoms for years and it was only after a fall in her home and a stay in hospital that she eventually got a referral to a memory clinic. After her diagnosis I thought we would get some form of help as she lives on her own with help from myself and my sister.
Life was getting increasingly difficult which was complicated by my mum's alcohol addiction. I spoke to her GP about care but was told non was available. Then one night she drank a full bottle of whiskey and ended up back in hospital. It was only then that social services got involved and arranged in house care which was such a relief.
My mum, as I knew her, has gone but there are still sparks there. Her love of Elvis comes through when she sings along to his songs and she can still point out the place where my late father fished from at the local reservoir.
I feel that everything has been a struggle.
Since her diagnosis her GP hasn't even reviewed her once. If she had been diagnosed earlier then life could have been a lot different as I wouldn't have felt like everything was a fight on her behalf and perhaps she may have started treatment to slow the Alzheimer's, at diagnosis we were told it was pointless.
Having care, however, has enabled me to have a mother - son relationship again, which at her age is more precious than anything. Oh she hasn't had a drink for over 12 months now
Carl
My Granda was diagnosed in 2017. However, that's basically where the information/assistance ended until the disease severely progressed. We were not advised what we were to expect in the future, what was out there to assist him or us as a family. All of our information was from our own research on the internet. When you hear dementia/alzheimers without the correct knowledge you just think memory loss, forgetfulness which is awful in itself but when you read this is a terminal condition, it doesn't fill you with much hope.
Reading the stages online and realising your loved one has progressed to the next stage is heartbreaking. More needs to be done to raise awareness and give families assistance. What medication can be used to help slow down the progression/reduce some of the awful behaviour changes which come wuth this disease. What assistance is out there to help the person diagnosed to get out and socialise or give their loved ones a bit respite.
For my Grandma she became my Granda's carer, but this meant she struggled to socialise as she was unable to leave him during the day to attend afternoon clubs where she used to socialise with friends as we were working so couldn't go and sit with my Granda. As a family we felt unsupported until the very end of his life but still even finally being assigned an adult social worker we still didn't know where to turn or what help was available.
Alzheimers is the cruelest disease in my eyes, as you lose the person you love twice, watching them change from what they were to the shell they become is truly heartbreaking but more needs to be done to aid the person with the diagnosis and their family. More awareness around early signs and early testing leading to an earlier diagnosis is vital. Most people just tie forgetfulness with old age not realising that's not always the case.
My greatest fear now in life is another loved one developing this disease, with cancer there is treatments, with physical disability their are aides to keep you mobile/active, but you still keep the person. With alzheimers it takes everything and all you can do is watch.
Reading the stages online and realising your loved one has progressed to the next stage is heartbreaking. More needs to be done to raise awareness and give families assistance. What medication can be used to help slow down the progression/reduce some of the awful behaviour changes which come wuth this disease. What assistance is out there to help the person diagnosed to get out and socialise or give their loved ones a bit respite.
For my Grandma she became my Granda's carer, but this meant she struggled to socialise as she was unable to leave him during the day to attend afternoon clubs where she used to socialise with friends as we were working so couldn't go and sit with my Granda. As a family we felt unsupported until the very end of his life but still even finally being assigned an adult social worker we still didn't know where to turn or what help was available.
Alzheimers is the cruelest disease in my eyes, as you lose the person you love twice, watching them change from what they were to the shell they become is truly heartbreaking but more needs to be done to aid the person with the diagnosis and their family. More awareness around early signs and early testing leading to an earlier diagnosis is vital. Most people just tie forgetfulness with old age not realising that's not always the case.
My greatest fear now in life is another loved one developing this disease, with cancer there is treatments, with physical disability their are aides to keep you mobile/active, but you still keep the person. With alzheimers it takes everything and all you can do is watch.
Chloe
My wife, Eve was diagnosed Approx' 11 years ago. Eve knew something was wrong and kept saying : I think I am loosing it: We went to our G.P. He referred us to an Alhiemer's specialist where the diagnosis was confirmed. Eve and me coped very well untill lockdown. Eve started to detrioate through this time. Christmas 2022 she became much worse, Confused did not recognise me, family, freinds, her sons and Daughter, later the same year she developed double incontinence. All this time I was her main carerer. In August 2023 she was aditted to a Care Home. I now live alone, life is now very sad. This is a living bereavment. Early diagnosis is so important in order to enjoy what time is left.
John
There was a lot of confusion and stress before having the diagnosis of my mother’s dementia. It was important to know exactly what was wrong with my mum knowing what was causing her personality and behaviour changes and not fully understanding what was happening to someone I deeply loved. The diagnosis was frightening and very upsetting, however it meant I could more forward to putting in place the best methods and options to help support my mum, and to research what I could do personally to help in this journey that we were both experiencing. I attended a carers support group, had a good supportive GP at the time, had my mum attend a day centre with activities to provide stimulation and avoid isolation. It was a difficult stressful time and a extremely emotionally rollercoaster seeing someone you love deteriorate. At times I felt very much alone, with dementia and a lot of people at the time knew nothing about the illness which made it more isolating. What I would like to see is more places for the elderly to attend. The day centre my mother attended has now been closed, this has an impact on making the elderly more isolated. More specialist nurses who have had proper training to deal with dementia, most nurses at the time did not have the proper training on dementia. To provide more knowledge to the general public, helping them to be able to see the signs and seek medical advice promptly instead of leaving there parents to struggle with this condition. Giving them more advice on how to navigate your way round to provide the best care for the person who is suffering sometimes in silence. Having society to see this illness not as shameful event but as a opportunity to grow in strength to become their voice which they have lost, and not to have to fight for resources, this area just added more stress to the situation knowing there was no help for a day off from caring.
Hoping in the future more organisations, family members, will be able to understand the condition and it will become a topic you can comfortably talk about.
Hoping in the future more organisations, family members, will be able to understand the condition and it will become a topic you can comfortably talk about.
Julie
I was slightly confused and of course when u have Dementure
U r disbelieved in most things u say so it becomes difficult to express yourself or when u do people just look at u with blank faces as much as to say “ u have got it and there is nothing we can do about it other than your daily pills which we have no idea if they are doing good or not, but we know each day we r fading away
I just pray they won’t put me in a home with people worse than I am. God Bless u all!
U r disbelieved in most things u say so it becomes difficult to express yourself or when u do people just look at u with blank faces as much as to say “ u have got it and there is nothing we can do about it other than your daily pills which we have no idea if they are doing good or not, but we know each day we r fading away
I just pray they won’t put me in a home with people worse than I am. God Bless u all!
Martin
My husband, Bill, was only 53 when I noticed things weren’t right and this was in early 2013. He was anxious and afraid of what was happening to him but couldn’t explain how he felt. I went to the GP first without his knowledge to try and explain his behaviour and to ask the GP to make him an appointment. The GP didn’t agree to my request at first but then asked Bill to go to the surgery. The GP wasn’t sure what was happening to Bill but said he would refer him to the Neurology department but there would be a long waiting list. I decided to make a private appointment for Bill to be seen earlier as it was having a huge impact on our lives. We got the appointment later in 2013 but not a proper diagnosis. We then saw a neurologist through the NHS who was amazing and arranged for a brain scan and eeg plus other tests. Bill was finally diagnosed in 2014 with early onset dementia/probable Alzheimer’s. We went through the whole devastating process and sadly Bill passed away in January 2023, aged 63.
I hope GPs are now more aware of the impact of dementia and I hope the waiting time for a diagnosis is now a lot less.
I hope GPs are now more aware of the impact of dementia and I hope the waiting time for a diagnosis is now a lot less.
Joanne
My lovely mum passed away in January 2011 from dementia, it was a dreadful time to see her go downhill over the years from being a capable lady and being to do most things for herself to not being able to do much at all, we as a family tried to look after her at home but eventually she went into care, but kept having falls and wondering around not knowing where she was, so the decision was made for her to go into residential care,where she stayed until she passed away in 2011, There were challenges that we had to overcome and she was well cared for, but towards the end of her life she didn’t know who any of us were. I would like to see the government act and make changes to help people like my lovely mum who are suffering from dementia.
Jane
My father was diagnosed with Alzheimer's 10 years ago. My mother looked after him until her death in August 2019. Within 2 hours of finding my mother dead in bed, my father had moved in with us and stayed with us during the Covid pandemic until April 2021 when I made the incredibly difficult decision to put him into a Care Home.
It was really hard, he was sonambulant and often went missing with everyone running around the village and fields to search for him. He was doubly incontinent and unable to do much for himself. The stress of looking after him day and night really took it's toll on my health as well as that of my 24 year old daughter who still suffers from anxiety. By the time he went into a Care Home he had little idea who we were as a family.
My father is now 93 years old, the money for his care has run out (almost £300,000), has advanced Alzheimers and the Local Authority now want to move him to a cheaper Home even though the Home, GP and the independent Assessor have both said he should not be moved.
They take £2,750 a month of his Pension (leaving him with about £15 per week) and the contribute just £200 per week. They say we should contribute £1,600 per month to make up the difference, which we can't afford.
They say on one hand that he doesn't need 1-1 care, however he can nothing for himself. Now unable to feed himself, walk, hardly speaks, and just eats and sleeps his care needs are very high. So high in fact, that no other Care Home will take him on!! It's an oxymoron really.
Until he needs dedicated nursing care, they say they can do no more.
It's incredibly stressful and too sad for words that a man who fought for his country, was in the Foreign Office, a Military Historian with over 20 books to his name and paid all his dues over the years is reduced to this undignified end. In some ways I'm thankful that he is unaware.
It was really hard, he was sonambulant and often went missing with everyone running around the village and fields to search for him. He was doubly incontinent and unable to do much for himself. The stress of looking after him day and night really took it's toll on my health as well as that of my 24 year old daughter who still suffers from anxiety. By the time he went into a Care Home he had little idea who we were as a family.
My father is now 93 years old, the money for his care has run out (almost £300,000), has advanced Alzheimers and the Local Authority now want to move him to a cheaper Home even though the Home, GP and the independent Assessor have both said he should not be moved.
They take £2,750 a month of his Pension (leaving him with about £15 per week) and the contribute just £200 per week. They say we should contribute £1,600 per month to make up the difference, which we can't afford.
They say on one hand that he doesn't need 1-1 care, however he can nothing for himself. Now unable to feed himself, walk, hardly speaks, and just eats and sleeps his care needs are very high. So high in fact, that no other Care Home will take him on!! It's an oxymoron really.
Until he needs dedicated nursing care, they say they can do no more.
It's incredibly stressful and too sad for words that a man who fought for his country, was in the Foreign Office, a Military Historian with over 20 books to his name and paid all his dues over the years is reduced to this undignified end. In some ways I'm thankful that he is unaware.
Claire
Everyone said “Oh you can live for years with Alzheimer’s “. So when my mum was diagnosed in April 2022 I started to get everything in place to keeping her safe and getting the help she needed to stay at home. My youngest brother lived with her so luckily knew she wasn’t alone at night. I myself and a family friend decided we could take care of her ourselves and if necessary later down the line we would get careers as extra help. My other brother said he would do what he could and so did my adult children. Sadly in May mum fell out of bed and broke her shoulder so was admitted into hospital. From there it was decided she needed to recover in a residential home. Again I was planning for the long term and so carried on getting everything ready for her to go back into the house she loved. Sadly she deteriorated very quickly and within a few weeks she was bedridden. I watched as my once full of life and ever up to an adventure mum became a frail old woman. Very often she thought I was her mum and it broke my heart. She became very angry and again I bore the brunt of that. Never the less I loved her and didn’t let her see how upset and helpless I felt. The day I was taken into the office and told she was now going to be on end of live care I fell apart. On October 2022 she passed away in the early hours before the nurse on duty had time to call me to be with her. So 6 months from diagnosis she was gone. I felt cheated which sounds selfish but I really thought she would have more time. Looking back now I feel that maybe it was a blessing that she didn’t suffer for years and we didn’t have to witness her slowly disappearing from the person she once was. During those few months the Alzheimer’s Society was a wonderful support and I’m grateful to the people at the end of the phone for letting me have someone to talk to. I only hope that in time this cruel disease can be eradicated.
Marlene
We went through a 2 year period from seeking advice from our doctor to getting the official d diagnosis from the Memory Clinic.
It came the same time I broke my leg and Covid kicked in. I also became my wife’s sole carer. Due to Covid, information and contact with the agencies was limited.
It came the same time I broke my leg and Covid kicked in. I also became my wife’s sole carer. Due to Covid, information and contact with the agencies was limited.
Chris
Well which story? My mother, mother in law and now my daughters mother in law were dealt the cruel hand of dementia. Each one took more than 2 years for us to have a formal diagnosis and all too late to really link in with community day care , or slowing down drugs. My mum was pleasntly happy in her confusion until she died, but my my MILaw was tormented, anxious, scared until she died after 5 years in a nursing home, 2years lying in a bed unable to communicate.
We all struggled with them, and now 10 years later nothing has changed in the speed of getting treatment after we knew what was wrong with my daughtdrs MILaw! 2 years from going to GP to finally starting on some medication to help. Tooò slow still !
We all struggled with them, and now 10 years later nothing has changed in the speed of getting treatment after we knew what was wrong with my daughtdrs MILaw! 2 years from going to GP to finally starting on some medication to help. Tooò slow still !
Pippa
God bless those that care and help dementia sufferers a chap who moved in next door to me was suffering with what I can only imagine must have been excruciatingly difficult and he thought I was playing loud music all night to him it was real eventually after trying to reason with him for 2 hrs he attacked I knew he had dementia so I did not retaliate but it has shocked me how many people incorrectly said I should of hit him its not about me or my ego it's about dementia sufferer going through a living nightmare sufferers need a diagnosis and support I fear disaster looms for the sufferer there family carers and general public the government needs to understand this action for diagnosis is vital for everyone no brushing under the carpet
Robin
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?