Dementia Support Line
Share your diagnosis story
We want to show decision-makers across the UK the realities of seeking a dementia diagnosis.
Share yours or a loved one's diagnosis story today and we'll add it to our story wall.
Let's make dementia a priority.
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 r...
My mum was diagnosed with Alzheime...
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...
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 breas...
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 out...
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...
My husband was diagnosed with a cognitive impairment after having an episode of delirium in 2018. He was only 66 at the time. His memory is steadily getting worse thing...
Trying to get things moving for Dad to get specialised care was so frustrating and painful as there seemed to be a lack of urgency initially and then complete lack of r...
We lost Mum in 2010, Mum was finally diagnosed with
Lewy body. I didn’t understand, I wish I could have had more information, I could have helped Mum more. So anyth...
When our mum Jean was having probl...
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…….
My husband was diagnosed with a cognitive impairment after having an episode of delirium in 2018. He was only 66 at the time. His memory is steadily getting worse things he remembered yesterday are forgotten today.
He was a Carpenter by trade and could turn is hand to most things but now he becomes frustrated as he can’t even work out flat pack furniture.
I still work full time as we haven’t the money for me to stop and look after him which in an ideal world is what i would like to do. I really feel that I should be able to do this.
I often find myself in floods of tears just remembering what we had together and now what we have been robbed of. The future really frightens me I love my husband very much but now feel like a carer Not being in a position to stay home makes me feel quite upset. We get no help My husband doesn’t like being on his own and I think it really worries him.
We take each day a day at a time
He was a Carpenter by trade and could turn is hand to most things but now he becomes frustrated as he can’t even work out flat pack furniture.
I still work full time as we haven’t the money for me to stop and look after him which in an ideal world is what i would like to do. I really feel that I should be able to do this.
I often find myself in floods of tears just remembering what we had together and now what we have been robbed of. The future really frightens me I love my husband very much but now feel like a carer Not being in a position to stay home makes me feel quite upset. We get no help My husband doesn’t like being on his own and I think it really worries him.
We take each day a day at a time
Anne
Trying to get things moving for Dad to get specialised care was so frustrating and painful as there seemed to be a lack of urgency initially and then complete lack of resource for him and family. It took time for the right nursing home who gave incredible care but it was a distressing experience. At least we were a family who could raise issues and fight for Dad. There are so many people without families or support who can't fight their corner and won't get the best care or treatment in both dementia treatment and routine health issues. The general medical world is not trained in dealing with dementia. We need knowledge and resource.
Susan
We lost Mum in 2010, Mum was finally diagnosed with
Lewy body. I didn’t understand, I wish I could have had more information, I could have helped Mum more. So anything that can help families understand Dementia now would be a blessing.
Lewy body. I didn’t understand, I wish I could have had more information, I could have helped Mum more. So anything that can help families understand Dementia now would be a blessing.
Maureen
When our mum Jean was having problems there was a long wait for assessment at a Memory Clinic. In the meantime she was seen during a crisis by a psychiatrist who after speaking with her for about 15 minutes said that she couldn’t recognise any problem, which at the time was quite unbelievable.
She had to spend time in a psychiatric unit at the hospital which was very unpleasant for her; if her condition had been diagnosed earlier this could have been avoided.
I am very surprised at how many‘professionals’ have a poor understanding of the difficulties of living with this condition and do not offer appropriate support.
She had to spend time in a psychiatric unit at the hospital which was very unpleasant for her; if her condition had been diagnosed earlier this could have been avoided.
I am very surprised at how many‘professionals’ have a poor understanding of the difficulties of living with this condition and do not offer appropriate support.
Diane
Share your diagnosis story
Share your diagnosis experiences with us, so we can show decision makers the realities and issues people are facing.