Dementia Support Line
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If you're ready to tell your story, we want your voice to be heard.
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?
It will take society to beat dementia. We’ll take your stories to those who need to hear them most, to help make dementia the political priority it deserves to be.
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 mum suffered Parkinsons dementia. She was...
yes my huband was diagnosed in feb. 2021. Doc wanted to do over the phone because of covid. I refused. next day they telephoned to say a psychiatrist would visit us at...
My beloved mum was diagnosed with Alzheimer's at the age of 65. We looked after her at home until it got difficult when we had to move he to a nursing home where she...
My partner of 14 years, Kevin was diagnosed with early onset Alzheimer’s dementia in March 2014 at the age of 58. I was working full time and paying a mortgage. ...
Steve my partner was misdiagnosed in 2018 as having mild cognitive behaviour by the memory clinic , he lost two years of treatment he could have had. We were told...
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
My mum suffered Parkinsons dementia. She was diagnosed at 62 but had shown symptoms from two years prior. The drugs from Parkinsons accerbate dementia but it is rarely talked about. She suffered delusions and had physical pain similar to missing limb syndrome. Within less than two years who she was and what she stood for disappeared. She suffered for 23 years, the last ten in a nursing home. For her husband, looking after the Parkinsons was nothing compared to the dementia. I lost my energetic, eccentric, compassionate , dancing, hiking, travelling mum 23 years before she died.
Lynne
yes my huband was diagnosed in feb. 2021. Doc wanted to do over the phone because of covid. I refused. next day they telephoned to say a psychiatrist would visit us at home. He was diagnosed that day. claiming attendance allowance was not difficult and made a difference to our finances. He was diagnosed with vascular dementia which has a different progression to Alzeimers,
Jean Keen
My beloved mum was diagnosed with Alzheimer's at the age of 65. We looked after her at home until it got difficult when we had to move he to a nursing home where she died a few months later aged 72. The following year my darling dad aged 77 met a lovely lady who he married with our blessing. Six years later she,aged 68, was diagnosed with Alzheimer's and again we looked after her at home till it was too difficult and we had to move her to the same nursing home where she took died aged 73. My grandad, mums father, died with Alzheimer's as did her brother and at least 2 of her sisters. My family has been devastated by this dreadful disease with robs intelligent independent people of their future,their dignity and causes immeasurable suffering to them and their entire family. When a loved one is diagnosed the family is on their own and very little help is available from the local authorities or the national health unless your income is below the pathetic limit of £23,250. This needs to change. We are encouraged by the state to save for old age, and to own our houses but then told we are too well off to access any help or support when we most need it. My family has spent thousands caring for our loved ones and whilst we don't regret that ,it is not right. I am now 72 and am fit and well I obviously have concerns as to whether I took will be affected by dementia. If I am then I will not put my family through the nightmare of caring for me. Unless things change drastically I will be off to Switzerland.
Anne Langham
My partner of 14 years, Kevin was diagnosed with early onset Alzheimer’s dementia in March 2014 at the age of 58. I was working full time and paying a mortgage. The progression of Kevin’s dementia was rapid and I had to juggle between a full time job and looking after Kevin. The social worker didn’t believe me when I told them I was struggling and they based their decision upon an hour long interview with Kevin on one of his good day, I asked for some respite care and was told to look to family for support. Kevin was sectioned shortly afterwards and was placed in care. I received no support and help.
Mary
Steve my partner was misdiagnosed in 2018 as having mild cognitive behaviour by the memory clinic , he lost two years of treatment he could have had. We were told there was no treatment, after two years with Steve deteriorating I thought there is something very wrong here, I asked his GP to refer him to St. George’s Hospital as I had researched the nearest hospital with a good department that dealt with Dementia. This was now 2020, during the COVID pandemic. A neurological consultant rang us and diagnosed Alzheimer’s, he did say of the previous diagnosis. I quote. It’s not mild cognitive behaviour if you have to give up your job. He prescribed Donepezil. That is two years lost that Steve could have been on that medication which makes me very cross. Steve was an extremely clever, witty man, it is all so sad. There needs to be much earlier correct diagnosis and more support, for after diagnosis you are just abandoned unless you fight for more help.
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?