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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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 husband John visited our GP for a problem shoulder...
My 87 year old Grandma is living with Dementia in a care home due to a fall she had in the home due to lack of support for my Grandad the primary carer. Despite having...
My mum, Olwyn, was diagnosed with Alzheimer’s at...
Getting an Alzheimer's diagnoses for my wife was...
I was a nurse before I retired and then became a non executive director at the local hospice so I did have some dementia training and experience but I was no...
My mother was diagnosed in 2019 after several months of try to get help, family members were keen to help at first but when they realised why was involved they dropped...
We were fortunate in our GP referred us to the local memory clinic as soon as she had completed her tests. The assessment was quite difficult for my husband because...
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
My husband John visited our GP for a problem shoulder but mentioned to him that he was worried about his memory. GP did the usual quick test and agreed John needed further input from the memory clinic. 3 weeks later we had an appointment and John is now on medication. Johns quick action and GP will help greatly as his diagnosis has been recognised early.
Pam
My 87 year old Grandma is living with Dementia in a care home due to a fall she had in the home due to lack of support for my Grandad the primary carer. Despite having a care plan and family visiting every single day, the carers at the home do not implement her care plan due to lack of understanding and proper training on what Dementia patients need - she can't find the words to answer their questions, so she says "No" when asked if she wants to leave her room or if she needs something, not because she doesn't want to bit she can't find the language to express her needs. Food is put in front of her and her hands don't always work for her but her carers did not feed her and it took other residents to alert us to the fact she wasn't able to feed herself and so wasn't eating. My Grandma was feisty in her previous life but Dementia has turned her into a sweet old lady, who smiles and doesn't make a fuss and this means that she is left and ignored by carers who know she hasn't a voice to complain about her treatment. All care staff need to have Dementia training just like all teachers have dyslexia training- more of us are being diagnosed with Dementia, so we need to get really good at supporting it. The recognition and support for Dementia is much better than in the 90's when my Great Grandma had it but progress is so slow and taboos still need to be broken down, more sophisticated diagnosis methods need to be shared with GPs (my Grandma wasn't spotted for years as she was great with dates despite only knowing her first Great Grandchild, my daughter as 'the baby' as she had lost her name) and support for all those living with Dementia at any stage to live a dignified and fulfilled life.
Phillippa
My mum, Olwyn, was diagnosed with Alzheimer’s at the age of 75 in 2015. Every step of the way from diagnosis through support for her changing needs to care when she was no longer able to look after herself to her end of life treatment was an absolute battle for her and me as her primary carer. The NHS does not have the time or the resource to support an individual with a diagnosis or their care-givers in a way that is helpful or meaningful. It was an emotionally draining and time-consuming journey where, thankfully, I was able to fine some support, almost exclusively, from small local volunteer run organisations that gave us all an acceptable quality of life. These provided respite care, advice about financial and physical support, reduced my feelings of guilt and isolation and generally gave us both a reason to carry on. Social services and the NHS provided almost no support at all and the GP was of little help.
There needs to be a massive change in joined up support across voluntary organisations, the NHS and Social Services to provide meaningful support at all stages of this difficult journey that is effective and value for money. No-one wants to take responsibilities for making peoples lives with dementia better as they have neither the resource, guidance or funds to do so and this needs to change now. People with dementia can have long fulfilling lives if they are supported and signposted to the best way to live.
There needs to be a massive change in joined up support across voluntary organisations, the NHS and Social Services to provide meaningful support at all stages of this difficult journey that is effective and value for money. No-one wants to take responsibilities for making peoples lives with dementia better as they have neither the resource, guidance or funds to do so and this needs to change now. People with dementia can have long fulfilling lives if they are supported and signposted to the best way to live.
Alison
Getting an Alzheimer's diagnoses for my wife was important because it confirmed our fears and gave a reason for what was happening, however initially it was up to loved ones to raise concerns and seek help.
Once a diagnosis was verified a course of action was initiated, but it soon became apparent there is limited support for Alzheimer’s patients and Carers.
Memory Clinic had a limited impact due to limited appointments, once the level of mental capacity had been assessed and medication started regular appointments ceased, leaving patient and carer in limbo not knowing where to turn to.
In our case, my wife went through an episode of sundowning which brought us into contact with the police who referred us to Social Services. Future incidents involved hospital stays and more referrals to Social Services, but limited funding made any support restrictive.
Social Services were unable to provide any support apart from signposting because majority of funding had been allocated to more headline gripping causes.
Changes that are needed include the need for a recognized continuous compulsory education on all forms of Dementia, which Doctors, Nurses, Carers and Health Professionals need to complete yearly, because in our experience knowledge and understanding of Alzheimer’s and its stages of progression are lacking in not only different fields of health but within the same fields.
After getting an Alzheimer’s diagnoses, as a Carer it soon became apparent, I was on my own to find what support or lack of support is available and to remain positive in face of adversity, therefore there is a need to help carers with Mental Health Issues. Similar to a lot of carers, I have a diagnosis of stress, depression and anxiety.
When accessible support is available it varies in quality due to organisations thinking they are Alzheimer’s aware but have little understanding because they rely on their knowledge of support friends and relatives received. We had the support from a local company who provided companionship, however, failed to acknowledge lack of cognitive impairment would have on conversations.
Once a diagnosis was verified a course of action was initiated, but it soon became apparent there is limited support for Alzheimer’s patients and Carers.
Memory Clinic had a limited impact due to limited appointments, once the level of mental capacity had been assessed and medication started regular appointments ceased, leaving patient and carer in limbo not knowing where to turn to.
In our case, my wife went through an episode of sundowning which brought us into contact with the police who referred us to Social Services. Future incidents involved hospital stays and more referrals to Social Services, but limited funding made any support restrictive.
Social Services were unable to provide any support apart from signposting because majority of funding had been allocated to more headline gripping causes.
Changes that are needed include the need for a recognized continuous compulsory education on all forms of Dementia, which Doctors, Nurses, Carers and Health Professionals need to complete yearly, because in our experience knowledge and understanding of Alzheimer’s and its stages of progression are lacking in not only different fields of health but within the same fields.
After getting an Alzheimer’s diagnoses, as a Carer it soon became apparent, I was on my own to find what support or lack of support is available and to remain positive in face of adversity, therefore there is a need to help carers with Mental Health Issues. Similar to a lot of carers, I have a diagnosis of stress, depression and anxiety.
When accessible support is available it varies in quality due to organisations thinking they are Alzheimer’s aware but have little understanding because they rely on their knowledge of support friends and relatives received. We had the support from a local company who provided companionship, however, failed to acknowledge lack of cognitive impairment would have on conversations.
Stephen
I was a nurse before I retired and then became a non executive director at the local hospice so I did have some dementia training and experience but I was no expert.
My father was showing signs of dementia with his behaviour and we contacted the GP to voice our worries. The GP did not do any examination or memory testing or capacity test because my father did not think there was anything wrong with himself therefore the GP said he could not act on anything.
We eventually got help and advice from Age UK. I spoke personally to the DVLA and advised that the GP would not investigate for a diagnosis therefore they kindly listened and my dad agreed to revoke his licence. His behaviour had influenced his driving and he had started mounting pavements. I arranged for him to have equipment to help with hygiene purposes. I also arranged day care for him.
My mother and I then completed power of attorney forms and then the GP had to listen. My father was referred to the hospital and he finally received a diagnosis.
We had a social worker who visited twice and she arranged for somebody to help with his personal hygiene. I was looking for some respite for my dad as Covid and restrictions arrived to allow some respite for my mother but unfortunately because of Covid that was not allowed. One of the carers told my mother that my father should not be having help with hygiene because they should be looking after poorly people.
My father then got admitted to hospital and sectioned under the Mental Health Act and there was no visiting.
He was moved to a nursing home that deals with people with mental health issues including Alzheimer's and dementia and we could not have asked for better care.
I had some experience and knowledge but most of relatives and carers do not and often struggle and find it hard to cope. They blame themselves and often there is no break or respite.
My father since passed away with family present and a caring bunch of staff who he thought a lot of and they thought a lot of him.
There are a lot of people out there that need a voice and help and I think your society goes a long way to providing that voice and help.
My father was showing signs of dementia with his behaviour and we contacted the GP to voice our worries. The GP did not do any examination or memory testing or capacity test because my father did not think there was anything wrong with himself therefore the GP said he could not act on anything.
We eventually got help and advice from Age UK. I spoke personally to the DVLA and advised that the GP would not investigate for a diagnosis therefore they kindly listened and my dad agreed to revoke his licence. His behaviour had influenced his driving and he had started mounting pavements. I arranged for him to have equipment to help with hygiene purposes. I also arranged day care for him.
My mother and I then completed power of attorney forms and then the GP had to listen. My father was referred to the hospital and he finally received a diagnosis.
We had a social worker who visited twice and she arranged for somebody to help with his personal hygiene. I was looking for some respite for my dad as Covid and restrictions arrived to allow some respite for my mother but unfortunately because of Covid that was not allowed. One of the carers told my mother that my father should not be having help with hygiene because they should be looking after poorly people.
My father then got admitted to hospital and sectioned under the Mental Health Act and there was no visiting.
He was moved to a nursing home that deals with people with mental health issues including Alzheimer's and dementia and we could not have asked for better care.
I had some experience and knowledge but most of relatives and carers do not and often struggle and find it hard to cope. They blame themselves and often there is no break or respite.
My father since passed away with family present and a caring bunch of staff who he thought a lot of and they thought a lot of him.
There are a lot of people out there that need a voice and help and I think your society goes a long way to providing that voice and help.
Sue
My mother was diagnosed in 2019 after several months of try to get help, family members were keen to help at first but when they realised why was involved they dropped out quite quickly, then just when the remaining family members needed the help the most covid hit, it was devastating we couldn’t get any help , advice , nothing we were on our own.
Trying to explain to an Alzheimer’s patient that they can’t go out , meet people or go to bingo was exhausting.
Shortly after covid hit mom deteriorated and more family members dropped out , we were at crisis point.
It took months and months to get help of any sort
Eventually we got mom some rest bite two hours per week, when mom was at rest bite I had to shampoo the carpets and steam clean the bed I’m sure I don’t need to say why .
In 2023 mom was having regular falls and was totally incontinent we managed to get mom a placement in a care home as mom was socially helped we had no choice it was this home or no home and mom had to contribute all of her state pension except for £25 per week for her personal items .
We were totally blindsided by the lack of choice or input we had but believing it was best for mom we agreed and gave up her council flat , what an error !!!
Care home was terrible and the word care should be removed from this awful establishment, I had to go everyday to wash and feed mom etc etc .
As time went on mom got really poorly and ended up in hospital for several months and I insisted that mom was not discharged to that home.
Another nursing home was found and mom was moved there no consultation no chance to view mom has been there since January 2024 and again I go almost everyday to check that moms getting puréed food and hoisted correctly in and out of bed etc .
It’s so exhausting I’m not able to work the whole situation has changed my family and personal dynamics , poor mom was moved from pillar to post with no consultation or anything it’s so difficult and I keep on fighting for mom and what’s best for her but as a human being I feel almost debilitated by the things that have happened .
Someone somewhere has to stop treating older people as nobody’s and treat them with respect and kindness , dementia is not a choice it’s an illness that robs people of themselves and the extended family of their loved ones.
And for the families it’s soul destroying.
Trying to explain to an Alzheimer’s patient that they can’t go out , meet people or go to bingo was exhausting.
Shortly after covid hit mom deteriorated and more family members dropped out , we were at crisis point.
It took months and months to get help of any sort
Eventually we got mom some rest bite two hours per week, when mom was at rest bite I had to shampoo the carpets and steam clean the bed I’m sure I don’t need to say why .
In 2023 mom was having regular falls and was totally incontinent we managed to get mom a placement in a care home as mom was socially helped we had no choice it was this home or no home and mom had to contribute all of her state pension except for £25 per week for her personal items .
We were totally blindsided by the lack of choice or input we had but believing it was best for mom we agreed and gave up her council flat , what an error !!!
Care home was terrible and the word care should be removed from this awful establishment, I had to go everyday to wash and feed mom etc etc .
As time went on mom got really poorly and ended up in hospital for several months and I insisted that mom was not discharged to that home.
Another nursing home was found and mom was moved there no consultation no chance to view mom has been there since January 2024 and again I go almost everyday to check that moms getting puréed food and hoisted correctly in and out of bed etc .
It’s so exhausting I’m not able to work the whole situation has changed my family and personal dynamics , poor mom was moved from pillar to post with no consultation or anything it’s so difficult and I keep on fighting for mom and what’s best for her but as a human being I feel almost debilitated by the things that have happened .
Someone somewhere has to stop treating older people as nobody’s and treat them with respect and kindness , dementia is not a choice it’s an illness that robs people of themselves and the extended family of their loved ones.
And for the families it’s soul destroying.
Patricia
We were fortunate in our GP referred us to the local memory clinic as soon as she had completed her tests. The assessment was quite difficult for my husband because he is so private normally and this took us both out of our comfort zones. His memory was so bad that he couldn't answer many of the questions and I was given questions to answer from my perspective, I did these in a separate room.
I was given the results, Alzheimer's, over the telephone while I was at work. This was not ideal but I was on my own. It was a shock even though I knew something was wrong and I couldn't keep my emptions in. So sad.
The diagnosis was important so that I could try to understand what was happening to my husband and be able to make life as good as I could for the both of us for as long as possible. With the diagnosis we were able to apply for Attendance allowance, Carers allowance and Council Tax reduction, these all help towards the extra expenditure we have now, Day care , Respite etc.
Getting a diagnosis soon is important to plans can be made to help live full lives for as long as possible enabling families to have good memories of their loved one before it's too late.
I was given the results, Alzheimer's, over the telephone while I was at work. This was not ideal but I was on my own. It was a shock even though I knew something was wrong and I couldn't keep my emptions in. So sad.
The diagnosis was important so that I could try to understand what was happening to my husband and be able to make life as good as I could for the both of us for as long as possible. With the diagnosis we were able to apply for Attendance allowance, Carers allowance and Council Tax reduction, these all help towards the extra expenditure we have now, Day care , Respite etc.
Getting a diagnosis soon is important to plans can be made to help live full lives for as long as possible enabling families to have good memories of their loved one before it's too late.
Janine
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?