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 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 mum and dad both had dementia, mum had vascular dementia died in 2008, dad had Alzheimer’s died in 2017. Dad had many stays in hospital due to
Physical problems...
We knew mum wasn’t right, lots of little things started happening which weren’t too odd in themselves but put together made us quite worried. I was diagnosed with...
It took me twelve months to get my diagnosed . We had to argue our G P until they sent us to the memory clinic.
A timely diagnosis depends on the loved one agreeing to go through the process. It took about 3 months to persuade Val to receive the memory tests and CT scan. The...
I noticed my mum's memory was beginning to go before she turned 80, her partner also mentioned it to me. I asked for her to be assessed and in time someone came out to...
Our mum’s behaviour had changed so we took her to...
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
My mum and dad both had dementia, mum had vascular dementia died in 2008, dad had Alzheimer’s died in 2017. Dad had many stays in hospital due to
Physical problems and the hospital did not allow for his Alzheimer’s, the family had to be there to give him water, the staff complained about his aggression and I suspect his patient notes have been accessed by staff who didn’t need to see them. We need better awareness and care in hospitals, not just notices on walls saying dementia friendly.
Physical problems and the hospital did not allow for his Alzheimer’s, the family had to be there to give him water, the staff complained about his aggression and I suspect his patient notes have been accessed by staff who didn’t need to see them. We need better awareness and care in hospitals, not just notices on walls saying dementia friendly.
Sue
We knew mum wasn’t right, lots of little things started happening which weren’t too odd in themselves but put together made us quite worried. I was diagnosed with breast cancer around the same time and living 250 miles away from her. Mum’s GP was so unhelpful, thought my illness was making me neurotic and that I was merely unhappy about mum’s standard of housekeeping and took her at her word for how she was coping. I got better and she got worse. Eventually diagnosed with Alzheimer’s after emergency admissions to hospital. Still not really managing despite a care package in place. I eventually took matters into my own hands (with support from other family members) and put her into an appropriate residential home. Social Worker implied I’d kidnapped her! She lived for a further 3 years in the home which was a safe and nurturing place for her. I’m still upset by the GP & social workers, and don’t even get me started at the financial side of things….
Lee
It took me twelve months to get my diagnosed . We had to argue our G P until they sent us to the memory clinic.
steven harris
A timely diagnosis depends on the loved one agreeing to go through the process. It took about 3 months to persuade Val to receive the memory tests and CT scan. The outcome indicated she had Fronto Temporal Lobe dementia. No medication or follow up support. The diagnosis heartbreaking as it was gave me a clear understanding of the illness. The future as short as it was. I had been a sole carer for about 8 years. I searched the Web and found numerous support groups run by volunteers.
I joined 'Oakley Friends' A group for Carers of those with Dementia. 2 x10 week courses and monthly sessions. Informal, but vital to get information, advice and guidance. An early diagnosis precludes doubt
Allowing family affairs to be sorted and support identified. With so many in the UK suffering, this should trigger Government the required strategies, resources and adequate funding. As Carers know it is one hell of a journey and your life stops to care for your loved one.
I joined 'Oakley Friends' A group for Carers of those with Dementia. 2 x10 week courses and monthly sessions. Informal, but vital to get information, advice and guidance. An early diagnosis precludes doubt
Allowing family affairs to be sorted and support identified. With so many in the UK suffering, this should trigger Government the required strategies, resources and adequate funding. As Carers know it is one hell of a journey and your life stops to care for your loved one.
Howard
I noticed my mum's memory was beginning to go before she turned 80, her partner also mentioned it to me. I asked for her to be assessed and in time someone came out to see her, she passed the first test. I was still concerned and felt the test was easy for her as she could follow simple instructions and hold a conversation. Six months later she failed the second test and was finally referred but a head CT scan took another eight months to come about. The upshot was she had Alzheimer's and was put on a drug to slow down the decline. Unfortunately the delay meant that she had lost all her short term memory which never comes back. She's about to turn 85 and she forgets things 2 minutes after you tell her something, she needs help to understand information and I have to take her to any appointment she has.
Julie
Our mum’s behaviour had changed so we took her to the GP who referred her to the memory clinic - her diagnosis was Depression. We knew it was not depression so pushed the GP to refer us to a Consultant - none of this was easy and we eventually ended up with a diagnosis over the telephone which was extremely difficult for my mum to process. We then encountered the care system - incompetent care agencies and eventually untrained care home staff who were unable to cope with my mums increasing challenging behaviour. She ended up being moved from care home to care home because the staff couldn’t manage her. All in all it was a nightmare from start to finish - hopeless - helpless and stressful…….
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?