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.
Howard and I first met and started...
My husband suddenly didn’t know who I was when we had just started our camper van holiday in France. Eventually when we were back he was diagnosed ( incorrectly as it t...
My husband was diagnosed after months of waiting just asked him a few questions but he did have a brain scan to prove it then it was go and get on with it a few years a...
My journey to diagnosis, I was working driving HGV and I started missing drops and getting lost and I got so scared something had to be done. I went to see my GP and he...
When visiting my GP for a personal reason I told him I had suspected that my husband may be developing dementia. He told me that he was treating me & to make an appoint...
My late father showed signs of Alzheimer’s from the age of 75. There wasn’t much medical knowledge therefore, no diagnosis or medication to at least slow progress down...
Diagnosis of Parkinson syndrome an...
I put my life on hold for my siste...
My mum was tested and discharged by Memory Services without a dementia diagnosis, despite significant problems with her memory and cognition. Six months later, she trie...
It took us nearly 2 years to get a diagnosis for my dad. The GP was very supportive, however the memory clinic we were referred to wasn’t. They suggested that my dad wa...
Mam suffered dementia to such an extent she had to go into a Care Home. Nothing was ever done to slow down it's severity but when at home she had been allocated a care...
Our first visit to the GP practice was an appointment with the practice paramedic who after a basic test referred my husband to the memory clinic. He explained that the...
Howard and I first met and started dating when we were at school together. We re-met 22 years ago and celebrated our 20th wedding anniversary this year. We celebrate everything as much as we can now.
My father and grandmother had dementia, as did Howard’s father, so I knew he had dementia about four years before he was diagnosed.
Howard studied at The Royal College of Music and composed music for TV, radio and theatre. He’d always been very practical but building something in the garden, even with instructions, became baffling. Sometimes he’d get on the wrong train platform and his driving also became worrying. He would say he was going to do the recycling and then he’d be gone for ages.
The memory clinic was reluctant to diagnose him because he still appeared reasonably independent, even though scans showed the presence of the amyloid protein connected to Alzheimer’s disease.
Howard took the car for an MOT test in 2021 and a few days later he was accused of not stopping after an incident. It was after this that I became stronger in my insistence on some form of diagnosis. Howard was eventually diagnosed with Alzheimer’s disease in August 2021.
It’s not easy to deal with. No-one understands the cost of care or what a carer goes through.
When you’re diagnosed with cancer you get a referral to a consultant, and you’re told through tests and scans what type of cancer you have. Whereas you’re not with dementia.
We only know what type of dementia Howard has because he’s taken part in clinical trials. There is no official requirement for all those living with dementia to have a scan to provide an accurate diagnosis.
My father and grandmother had dementia, as did Howard’s father, so I knew he had dementia about four years before he was diagnosed.
Howard studied at The Royal College of Music and composed music for TV, radio and theatre. He’d always been very practical but building something in the garden, even with instructions, became baffling. Sometimes he’d get on the wrong train platform and his driving also became worrying. He would say he was going to do the recycling and then he’d be gone for ages.
The memory clinic was reluctant to diagnose him because he still appeared reasonably independent, even though scans showed the presence of the amyloid protein connected to Alzheimer’s disease.
Howard took the car for an MOT test in 2021 and a few days later he was accused of not stopping after an incident. It was after this that I became stronger in my insistence on some form of diagnosis. Howard was eventually diagnosed with Alzheimer’s disease in August 2021.
It’s not easy to deal with. No-one understands the cost of care or what a carer goes through.
When you’re diagnosed with cancer you get a referral to a consultant, and you’re told through tests and scans what type of cancer you have. Whereas you’re not with dementia.
We only know what type of dementia Howard has because he’s taken part in clinical trials. There is no official requirement for all those living with dementia to have a scan to provide an accurate diagnosis.
Trish and Howard
My husband suddenly didn’t know who I was when we had just started our camper van holiday in France. Eventually when we were back he was diagnosed ( incorrectly as it turned out) with frontotemporal dementia based on an MRI scan and a memory test.The diagnosis came from a neurologist who had never met him. I felt this was the wrong diagnosis but by chance I was given a consultants name and we had an appointment with him ( paid for this) . He was considerate and spent a long time making a diagnosis with DAT scans and an MRI scan. Finally we had a diagnosis of Dementia with Lewybodys which answered our questions as to the misidentification of me and other delusions. We are now under the consultants care with our GP who is wonderful and with the Rare Dementia Society we have incredible support plus Memory Works locally, but it shouldn’t be like this. We were lucky we could afford to initially go private, not everyone can.
Bridget
My husband was diagnosed after months of waiting just asked him a few questions but he did have a brain scan to prove it then it was go and get on with it a few years after I saw a group were trying to get Keighley shops dementia friendly I went to meeting and suggested a information+ drop in we have been going ten years now with one full time payed employer and one part time we are very busy helping others with activities etc we are a small charity and I still volunteer.
Barbara
My journey to diagnosis, I was working driving HGV and I started missing drops and getting lost and I got so scared something had to be done. I went to see my GP and he got the ball rolling a week later mental health nurse called to test me.
Nothing went in my favour lol.
I started to go an early on set support group loved it we were all the same, 3/4 months later and that was the day I was to be diagnosed with Vascular Dementia. Worst day of my life.
Nothing went in my favour lol.
I started to go an early on set support group loved it we were all the same, 3/4 months later and that was the day I was to be diagnosed with Vascular Dementia. Worst day of my life.
Philip
When visiting my GP for a personal reason I told him I had suspected that my husband may be developing dementia. He told me that he was treating me & to make an appointment for my husband to see him. I didn’t see how I could tell my husband of my concerns especially as his sister was in a care home with dementia. He was very upset on her behalf. & said how awful it would be to have this problem. Eventually after at least a year or so I wrote a letter to my doctor pleading for his help & said I would pretend that he was going for a routine check up for his heart condition & that my husband would be unaware of the real reason. This was agreed & I went into the surgery with him. The doctor told me that he didn’t think it was anything I needed to worry too much about. However he arranged for him to be assessed & it was confirmed that he had dementia. 1 year on & his condition is now rather difficult to deal with.
Carole
My late father showed signs of Alzheimer’s from the age of 75. There wasn’t much medical knowledge therefore, no diagnosis or medication to at least slow progress down. Dad ended up in nursing home. At end of life, his GP just told us he was a very sick man. Dad passed away at the age of 85. In the 10 years Dad had dementia, mum and he were able to live a reasonably normal and active life for about 8 years. Dad then started to become more forgetful. He enjoyed a walk and doing a bit of shopping but came home by bus, one day getting on the wrong one. Holiday’s stopped as dad couldn’t deal with different environments. Mum increased the support he needed. The family supported them both even though we worked. Mum was a dedicated wife to dad and looked after him 24 seven. Her life also changed and it wasn’t until towards the later end of dads life she mentioned getting respite for him so she could have a much needed rest. Alzheimer’s/ dementia has severe affects on the person with it. Most certainly the emotional and physical affects it has on untrained carers and families is immense. The affects are 2 fold on the NHS !
Sandra
Diagnosis of Parkinson syndrome and dementia with Lewy bodies also frontal lobe syndrome
Trevor
I put my life on hold for my sister when she was diagnosed and cared for her for 10 months 24/7 until a fall at home took her away and her future decided by strangers and human rights ignored. I have been trying to put things right on her behalf for over 2 years at a a cost of over £2ooo.
I would like to see laws to protect human rights, to ensure POA'S act with protocol, and ensure OPG are fit for purpose to investigate concerns raised , rules should be put in place for transparency when social services make decisions.
These issues relate to my personal experiences in my ongoing fight for justice for Marion.
I would like to see laws to protect human rights, to ensure POA'S act with protocol, and ensure OPG are fit for purpose to investigate concerns raised , rules should be put in place for transparency when social services make decisions.
These issues relate to my personal experiences in my ongoing fight for justice for Marion.
My mum was tested and discharged by Memory Services without a dementia diagnosis, despite significant problems with her memory and cognition. Six months later, she tried to take her own life. She was admitted to hospital where they diagnosed Alzheimer's within a few days. It shouldn't take a suicide attempt to get a diagnosis.
My husband was diagnosed with mixed dementia following a critical illness. We were sent to Memory Services after he was discharged from hospital. The practitioner did not read his notes before the consultation - she did not know about his illness, his diagnosis or what medication he had been prescribed. He was discharged to the GP.
My experiences of Memory Services have been woeful.
My husband was diagnosed with mixed dementia following a critical illness. We were sent to Memory Services after he was discharged from hospital. The practitioner did not read his notes before the consultation - she did not know about his illness, his diagnosis or what medication he had been prescribed. He was discharged to the GP.
My experiences of Memory Services have been woeful.
Viv
It took us nearly 2 years to get a diagnosis for my dad. The GP was very supportive, however the memory clinic we were referred to wasn’t. They suggested that my dad was stressed and suffered simply from anxiety. They also tried to do an assessment over the phone without any family present and of course my dad said he was fine and that his family was exaggerating. They did a scan and it was inconclusive.
We were then referred to a neurological specialist. As it was during Covid we received our diagnosis over the phone. We did the best we could and the neurologist gave as much advice and support over the phone. It had been a big struggle since that from getting my parents financial support especially as mum had to stop work.
We have a lovely dementia nurse who tries to support us as best a she can but unfortunately the social care system as well as new GP has failed my parents.
What changes would I make.
Firstly - listen to the family when they have concerns about loved ones
- more financial support
- the assessment to get the support is mentally draining
-unpaid carers need financial support
We were then referred to a neurological specialist. As it was during Covid we received our diagnosis over the phone. We did the best we could and the neurologist gave as much advice and support over the phone. It had been a big struggle since that from getting my parents financial support especially as mum had to stop work.
We have a lovely dementia nurse who tries to support us as best a she can but unfortunately the social care system as well as new GP has failed my parents.
What changes would I make.
Firstly - listen to the family when they have concerns about loved ones
- more financial support
- the assessment to get the support is mentally draining
-unpaid carers need financial support
Amy Campbell
Mam suffered dementia to such an extent she had to go into a Care Home. Nothing was ever done to slow down it's severity but when at home she had been allocated a carer for half an hour at 8am and 9pm. At the end she recognised only myself of her 3 children as a family member which was hard to take, as was her deterioration from how wonderful she had been as a mother and grandmother.
David
Our first visit to the GP practice was an appointment with the practice paramedic who after a basic test referred my husband to the memory clinic. He explained that they would only see him after a blood test and CT scan had ruled out any physical cause of his symptoms. Bloods were taken soon after and we waited for the memory clinic to contact us. After 6 months, during which time we were told by the GP that we had been referred and we just had to wait, I contacted the memory clinic myself to be told that my husband wouldn't be seen as he hadn't had a CT scan. Further communication with the GP surgery revealed the hospital had refused the scan as they didn't feel it was required. A brilliant lady at the memory clinic telephoned our GP to say it was actually a necessity. We had another appointment with the practice paramedic who said he would do everything in his power to get my husband scanned and he did. We were then finally given an appointment at the memory clinic but they were unable to diagnose as the scan results were not available! They referred my husband to the neurologist who diagnosed young onset Alzheimers immediately but we needed a PET scan to prove it. This was performed shortly afterwards and proved an accurate diagnosis.
We received the diagnosis in writing exactly 1 year after our initial GP appointment which was 1 week after my husbands 60th birthday.
We received the diagnosis in writing exactly 1 year after our initial GP appointment which was 1 week after my husbands 60th birthday.
Avril
Share your diagnosis story
Share your diagnosis experiences with us, so we can show decision makers the realities and issues people are facing.