Dementia Support Line
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Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?
It will take society to beat dementia. We’ll take your stories to those who need to hear them most, to help make dementia the political priority it deserves to be.
My dad was getting memory impairment - we could see this as a family but it took a while to get a diagnosis - he was super-intelligent and so those who didn't know him...
My story started about two and half years ago.
We...
My dad was painfully diagnosed with early on-set Alzheimer’s at the young age of 51 after several years of tests and tears. Last year, at 34 years old I found out...
I spent 11 years caring for my dear mum and dad who both had dementia. No symptoms were the same and I felt helpless and just learned through reading articles but...
My mother was diagnosed 2 years ago, although I suspect she’d had it about 5 years by then, she would not even talk about it or see doctor as she’d seen her own...
My wife was diagonised with alzhiemers and...
My husband was diagnosed with Alzheimer's disease, days before the lockdown in 2019. At that time the disease was already quite advanced. Unfortunately with it being...
Getting a diagnosis for my husband’s Alzheimer’s was a mission. I recognised symptoms a couple of months after a cancer operation. I persuaded him to go see a...
My husband was diagnosed with Alzheimer’s 5 years...
My husband was diagnosed with mixed dementia(vascular & Alzheimers) in Feb 22. But myself, family and friends saw a change in his personality from 2016. Following an...
Both parents diagnosed with dementia. Health care workers visited but came before appointment time on many occasions. They would say everything was fine and they were...
My mum was diagnosed with Alzheimer’s in 2017, a...
My dad was getting memory impairment - we could see this as a family but it took a while to get a diagnosis - he was super-intelligent and so those who didn't know him would have thought he was just normal even as we could see he was becoming impaired. He was eventually diagnosed with vascular dementia. We had noticed by the time dad passed away that mum's memory wasn't so good. She I think was in denial and could mask well and pretend everything was OK to friends who didn't know her well. Eventually she agreed to an assessment and was diagnosed with Alzheimers. She's quite advanced now and is happier since she agreed to go to a care home - things were tough at home - she would wander and fall over outside. Early diagnosis is important to me because I am well aware I have a high risk of dementia and would like to get started on treatment as soon as is needed and spare my family from the challenges we have had.
Liz
My story started about two and half years ago.
We had to have our loft done with more boards and a loft ladder so it was more easy to excess.
I was standing on a chair as I have done many times, this time was different the opening slipped out of my hand and hit me on the head. I tried again bad mistake! it did it again. I came down and gathered myself and was ok this time. I then had to pass all the boxes and things that were up there to my wife. The following year I had my assessment and then I went to the Dementia Clinic and I have met some wonderful people and made life long friends. Singing, Talking, Music & Movement and we have a party which will be on 23rd May music and dancing. I just hope I can keep going, the meds I had first didn't agree with me.
We had to have our loft done with more boards and a loft ladder so it was more easy to excess.
I was standing on a chair as I have done many times, this time was different the opening slipped out of my hand and hit me on the head. I tried again bad mistake! it did it again. I came down and gathered myself and was ok this time. I then had to pass all the boxes and things that were up there to my wife. The following year I had my assessment and then I went to the Dementia Clinic and I have met some wonderful people and made life long friends. Singing, Talking, Music & Movement and we have a party which will be on 23rd May music and dancing. I just hope I can keep going, the meds I had first didn't agree with me.
Howard
My dad was painfully diagnosed with early on-set Alzheimer’s at the young age of 51 after several years of tests and tears. Last year, at 34 years old I found out that I shared the same fate, as I was diagnosed with the PSEN1 gene mutation which means that I will get early on-set Alzheimer’s at the same age as my father. I’m now 35 years old & urgently need the government to try & help find a cure. I want more time, I wish my father had more time, & I don’t wish anyone to go through the torment my family’s gone through. More funding for research is the only way to help anyone that has been affected in any way by this disease! People think of Alzheimer’s as an older persons disease but this isn’t always the case, sadly I wonder if people realised that it might be given more attention?
Rebecca
I spent 11 years caring for my dear mum and dad who both had dementia. No symptoms were the same and I felt helpless and just learned through reading articles but never did understand the best way to deal with their symptoms which were ever changing. Please get families help in dealing with this cruel and relentless disease.
June
My mother was diagnosed 2 years ago, although I suspect she’d had it about 5 years by then, she would not even talk about it or see doctor as she’d seen her own mother with Alzheimer’s in the 80s. We saw our GP, who referred mam for memory tests, as I sat with her during the test even I was shocked by some of the things mam could no longer draw or do. She was diagnosed following this and put on medication, after 6 months on medication (she still takes it now) the specialist discharged her, since then she has had no contact from hospitals, GP, CPN to check how she is doing or how her and my Dad are coping. Both are mobile and healthy, bar Alzheimer’s , but as time goes on, the asking where her mam is, or when is she going home, repeating constantly, and the ability to pick out what to wear, wearing clothes that she would never have worn together as she was always so stylish, hiding things incase they get stolen etc etc. This is such a cruel disease and needs more government aid and NHS support. My dad is doing a fantastic job looking after mam and I am their carer, other family members help and support too. I do often worry about people living with dementia and how they cope without a support network cope.
This disease takes so much from families I pray for a future with better treatment and medication that will hopefully eradicate this cruel disease.
This disease takes so much from families I pray for a future with better treatment and medication that will hopefully eradicate this cruel disease.
Dawn
My wife was diagonised with alzhiemers and left me and the boys in 2018 at the age of 62,still miss her terribley for all I do trying to keep busy in the community i still come home to an empty house with just the dog to talk to. still have good friends that drag me out but everywhere you see everyone as couples enjoying each others company,miss the chats about our days and happy holidays with the kids.I suppose we were lucky that we had help from the Alzhiemers society,lovely girl called Jess would come and see us and give us vital information to cope with the situation. Liv eventually got worse and Jess helped us with getting a stair lift and hand rails and in the last couple of years a bed for downstairs,we both slept downstairs just couldnt leave her on her own.The last couple of years were the worst she couldnt feed herself or talk and every day social would call and help me turn her and wash her,but she could still smile and would hold my hand,she missed her first grandaughter which i know she would have adored,I like to think she looks down on two of them now. Early diagnosis is very important it gives everyone time to digest whats going to happen and with new drugs comming in all the time ,help to slow it down,Sheffield Hallam were very good with us and explained things very plainly , Its sad that the society has to rely on doanations as one of the biggest killers in our country goverment needs to prioritise how it spends money on this terrible disease.As a communiity our village set up musical memories at our community centre where anyone who would benefit from singing are free to come along sing, drink tea and eat cake and most importantly carers can talk to eat other and share thier thoughts instead of bottling them up
Phil
My husband was diagnosed with Alzheimer's disease, days before the lockdown in 2019. At that time the disease was already quite advanced. Unfortunately with it being lockdown we were not able to access any help at all. It was a horrific time and my poor husband was sectioned and taken to a MH hospital where he was given medication and stabilised. When I first approached our GP regarding my fears the doctor was reluctant to make a referral to the Memory Clinic, saying he had to ask for a referral himself as it was against his human rights otherwise. The doctor considered the greater risk to my husband was a heart attack so prescribed statins. Within three months, my husband's symptoms escalated to a frightening degree. He is now in a nursing home and has further deteriorated. Had we had a more timely diagnosis, we may have been able to have the support at the right time and be in a different position.
Libby
Getting a diagnosis for my husband’s Alzheimer’s was a mission. I recognised symptoms a couple of months after a cancer operation. I persuaded him to go see a doctor even though he insisted there was nothing wrong.
He was fobbed off being told after a urine test that he had a urine infection.
He continued to have more and more symptoms and 20 months later I insisted we go see the doctor again. This time, two questions into the test he was referred to the Memory clinic. It took another 7 months before he was seen by them and diagnosed after all the memory tests and CT scan.
He sadly passed away 2 months ago, not from his Alzheimer’s but lung cancer and I am so glad he didn’t get to the stage where he didn’t recognise any of his family.
More needs to be done to get an early diagnosis as had my husband had medication earlier his last few years would have been more easy to deal with as I became his carer after having to retire 3 years early to look after him.
He was fobbed off being told after a urine test that he had a urine infection.
He continued to have more and more symptoms and 20 months later I insisted we go see the doctor again. This time, two questions into the test he was referred to the Memory clinic. It took another 7 months before he was seen by them and diagnosed after all the memory tests and CT scan.
He sadly passed away 2 months ago, not from his Alzheimer’s but lung cancer and I am so glad he didn’t get to the stage where he didn’t recognise any of his family.
More needs to be done to get an early diagnosis as had my husband had medication earlier his last few years would have been more easy to deal with as I became his carer after having to retire 3 years early to look after him.
Linda
My husband was diagnosed with Alzheimer’s 5 years ago.
I remember that day like yesterday. We had the results after many tests and finally a brain scan. We were basically told to go away and get on with it.
I researched as much as I could.
I did everything I could to get help for the both of us to no avail.
Well 5 years on and I was totally burnt out.
I had no choice but to get him in a care home, I couldn’t cope anymore.
He was in the care home for 6 months. Because he liked to walk around he was it on diazepam a few times a day. He would start to come around and they would give him another dose.
His dementia advanced very quickly while there.
He’s now in hospital being taken off the diazepam after I insisted they stop it. He had no quality of life.
He now needs nursing care. Trying to get CHC funding is a joke. It’s a terminal illness yet they do everything to stop you getting it.
Most of the care homes we’ve visited won’t take him because he likes to walk around.
Our last option is one five miles away from our home. It’s perfect for him. The only problem there’s a huge top up fee.
This is a man who’s worked since he was 16. Never in his life claimed any sort of benefit. Basically tossed to one side. It’s heartbreaking.
I remember that day like yesterday. We had the results after many tests and finally a brain scan. We were basically told to go away and get on with it.
I researched as much as I could.
I did everything I could to get help for the both of us to no avail.
Well 5 years on and I was totally burnt out.
I had no choice but to get him in a care home, I couldn’t cope anymore.
He was in the care home for 6 months. Because he liked to walk around he was it on diazepam a few times a day. He would start to come around and they would give him another dose.
His dementia advanced very quickly while there.
He’s now in hospital being taken off the diazepam after I insisted they stop it. He had no quality of life.
He now needs nursing care. Trying to get CHC funding is a joke. It’s a terminal illness yet they do everything to stop you getting it.
Most of the care homes we’ve visited won’t take him because he likes to walk around.
Our last option is one five miles away from our home. It’s perfect for him. The only problem there’s a huge top up fee.
This is a man who’s worked since he was 16. Never in his life claimed any sort of benefit. Basically tossed to one side. It’s heartbreaking.
Margaret
My husband was diagnosed with mixed dementia(vascular & Alzheimers) in Feb 22. But myself, family and friends saw a change in his personality from 2016. Following an incident on a tube train in 2018 that was out of character, we got a referral to a consultant, a memory test was done. I found it was mainly a memory test which at that time he was not presenting with greatly, the main issue being the personality changes, apathy, more argumentative, isolating himself from family, not being able to follow conversations so didn’t engage, would misunderstand words said to him, but this did not appear to be addressed and no Dementia diagnosis was made. The pandemic then happened causing distance and isolation for us all. In Aug 21 he attacked his son in front of his grandchildren for no reason. I sought another referral and in Feb 22 we got his diagnosis. The Alzheimers part of his illness had become increasingly apparent in 21. Following diagnosis, I had to monitor what he used his payment cards for, track his movements away from the house, avoid arguments etc. The attack on my son had meant meant they couldn’t visit anymore for their safety. In Jan 23 things got considerably worse with his behaviour becoming more aggressive and with psychosis, and threatening to kill himself, walk in front of a car etc so mental health became involved, and in April 23 he became necessary that he had to be sectioned for his own and others safety. He is still in a mental health hospital as despite various changes of medication his presentations fluctuate a lot even within one day, and during the last year now requires more personal care. I go through periods of guilt because I accept that he needs 24 hour care, but he is still only 73, still physically strong with healthy organs, which means that potentially he will have to stay in hospital/care environment for many years. He is unable to understand or accept this and from his view point is not a life. His fluctuating presentation is even making it difficult to move him from the hospital in a care home. Although it is a hospital I cannot fault the daily care he receives, which involves quite a lot of one to one care, but the comment quality of life is often used and as far as I am concerned when a person with Dementia reaches this stage there is no quality of life, just an existence till death knocks on the door. I am now of the opinion that once you get to a decent age even a terminal diagnosis cancer or other illnesses is better than Dementia, where at least you still have a mental capacity to take pleasure in the things you enjoy for a long as the illness allows.
Linda
Both parents diagnosed with dementia. Health care workers visited but came before appointment time on many occasions. They would say everything was fine and they were recognised but when asking questions about what had been said it was not right and I told them only to be told they didn’t have time to come back in. This needs looked at and I think they need better training and should speak to the people who are looking after the person with dementia. Even though they say help is there it isn’t and you feel as if you are constantly banging your head against a brick wall. Some carers that visit you can tell it is just a job to them and they are only doing it until they can find something else. Unfortunately both parents have passed away a few years ago but it still annoys me how they and myself were treated.
Jacqueline
My mum was diagnosed with Alzheimer’s in 2017, a farmer’s wife my mum and dad were devoted and when mum died had been Married 60 years, had three children, seven grandchildren and three great children, they had shared a great life.
Getting mum diagnosed was tricky as obviously she didn’t realise there was anything wrong, however we were worried about her driving … so had to get it sorted. The GP and Hospital handled it very sensitively and we felt mum and we were treated kindly. Ultimately tho there is very little support in a small farming community for people with this condition. We bumbled along for a few years Dad was diagnosed with bladder cancer so we were taking him for treatment and supporting him as well. In February 2020 mum contacted what we now believe was covid but didn’t realise at the time. At this point I had to leave my full time job as a director it wasn’t fair to the company, my family or me I was exhausted. We cared for her at home on the farm and although she was very ill she survived with the help of brilliant care by our local Health Centre and community care team. Unfortunately though when she recovered the Alzheimer’s had fallen off a cliff. Then lockdown came we couldn’t get any help my dads cancer was still a problem and all of us as a family caring for her and him were exhausted. She had become frustrated, frightened and aggressive. The whole situation became unsafe for everyone concerned. With extremely heavy hearts we started looking for care homes. Not easy to find in the pandemic especially for people with severe Alzheimer’s. We did find one. The day my dad and took her was literally the worst day of my life. Not sure I will ever be able to come to terms with that day and what was to follow. Because of covid obviously we were unable to have much physical contact to start with and had to sit at windows etc absolutely horrendous. Even when we could get in we were time limited and all of us were heartbroken. But worse was to come, mum became unwell and whilst a practice nurse was examining her she found a large lump in her abdomen. Mum was diagnosed with stomach cancer in the June of 2021 and died in the November. She didn’t receive one day of professional nursing care and although very poorly and despite our desperate efforts never received any continuous health care. From June to November the only doctor that came to see her was the doctor who came to issue the death certificate. We fail to understand why my mum didn’t deserve nursing care, the home did their best but they were not medical professionals.
I am sure there are many families out there with similar experiences. This was ours. We will always focus on our parents legacy of love and love of family and all the many years of happiness they and we had together. But every now and the images come back to haunt us of those final few years …. Gosh it’s hard. Our parents are at peace now I hope time will eventually bring peace to our hearts ♥️
Getting mum diagnosed was tricky as obviously she didn’t realise there was anything wrong, however we were worried about her driving … so had to get it sorted. The GP and Hospital handled it very sensitively and we felt mum and we were treated kindly. Ultimately tho there is very little support in a small farming community for people with this condition. We bumbled along for a few years Dad was diagnosed with bladder cancer so we were taking him for treatment and supporting him as well. In February 2020 mum contacted what we now believe was covid but didn’t realise at the time. At this point I had to leave my full time job as a director it wasn’t fair to the company, my family or me I was exhausted. We cared for her at home on the farm and although she was very ill she survived with the help of brilliant care by our local Health Centre and community care team. Unfortunately though when she recovered the Alzheimer’s had fallen off a cliff. Then lockdown came we couldn’t get any help my dads cancer was still a problem and all of us as a family caring for her and him were exhausted. She had become frustrated, frightened and aggressive. The whole situation became unsafe for everyone concerned. With extremely heavy hearts we started looking for care homes. Not easy to find in the pandemic especially for people with severe Alzheimer’s. We did find one. The day my dad and took her was literally the worst day of my life. Not sure I will ever be able to come to terms with that day and what was to follow. Because of covid obviously we were unable to have much physical contact to start with and had to sit at windows etc absolutely horrendous. Even when we could get in we were time limited and all of us were heartbroken. But worse was to come, mum became unwell and whilst a practice nurse was examining her she found a large lump in her abdomen. Mum was diagnosed with stomach cancer in the June of 2021 and died in the November. She didn’t receive one day of professional nursing care and although very poorly and despite our desperate efforts never received any continuous health care. From June to November the only doctor that came to see her was the doctor who came to issue the death certificate. We fail to understand why my mum didn’t deserve nursing care, the home did their best but they were not medical professionals.
I am sure there are many families out there with similar experiences. This was ours. We will always focus on our parents legacy of love and love of family and all the many years of happiness they and we had together. But every now and the images come back to haunt us of those final few years …. Gosh it’s hard. Our parents are at peace now I hope time will eventually bring peace to our hearts ♥️
Patricia
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?