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.
The thing about receiving a diagnosis means being...
Our mother had a fall just before the covid epidemic....
After a brain scan in 2017 my husband was diagnosed...
My partner has terminal cancer. After problems with memory, he sought help from his GP. The local memory service and consultant there diagnosed Frontotemporal...
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...
The thing about receiving a diagnosis means being able to plan.
As part of the diagnosis we could get attendance allowance to help with care.
This has meant can get adaptions completed to the bathroom. And repairs undertaken that were neglected by Mum.
This has meant we can keep Mum in her own home. Where she keeps life skills.
I could apply for deputyship to help deal with Mum's finances and arrange care.
Which means Mum can got our more Vis live in carer.
As part of the diagnosis we could get attendance allowance to help with care.
This has meant can get adaptions completed to the bathroom. And repairs undertaken that were neglected by Mum.
This has meant we can keep Mum in her own home. Where she keeps life skills.
I could apply for deputyship to help deal with Mum's finances and arrange care.
Which means Mum can got our more Vis live in carer.
Rachel Pickering
Our mother had a fall just before the covid epidemic. This we feel started her demise to dementia. Having eventually arranged a Memory Test (this having to be over the phone and a home visit, because of Covid) she was diagnosed with Vascular Dementia and prescribed medication. This is where the medical and care help stopped, she didn't qualify for a care package! We then as a family had to go online and research Dementia, which was a minefield of information to go through, but we prevailed and contacted many organisations and health departments. If this information was readily available at doctors surgery's this would have saved so much time and anguish. The outcome of our determination for our Mum is that she's now happily residing in a wonderful care home 10 minutes away from my sister.
Maureen
After a brain scan in 2017 my husband was diagnosed with “cerebrovascular small vessel disease.” We had no idea what this was but told the NHS consultant we were worried about dementia. His response was:
“Don’t worry about it; it will still be in there, just take longer to come out.” No advice, no further appointments, that was it.
At home I researched the disease online and realised it amounted to Vascular dementia, and read about the likely progress of the disease. No medical professional actually gave that designation.
It’s been a long hard road coping with each stage since, with no support from social services and having to refer myself as a Carer. Especially with the pandemic coming in the middle of his 7+ years of decline. I would hope that others receive help and support earlier.
My image shows us after my charity walk to raise money for dementia to mark my 70th birthday, which was during the lockdown period. This was 4 years ago in 2020.
“Don’t worry about it; it will still be in there, just take longer to come out.” No advice, no further appointments, that was it.
At home I researched the disease online and realised it amounted to Vascular dementia, and read about the likely progress of the disease. No medical professional actually gave that designation.
It’s been a long hard road coping with each stage since, with no support from social services and having to refer myself as a Carer. Especially with the pandemic coming in the middle of his 7+ years of decline. I would hope that others receive help and support earlier.
My image shows us after my charity walk to raise money for dementia to mark my 70th birthday, which was during the lockdown period. This was 4 years ago in 2020.
Eileen
My partner has terminal cancer. After problems with memory, he sought help from his GP. The local memory service and consultant there diagnosed Frontotemporal Dementia, which wasn't correct. We were concerned about the diagnosis and sought further advice from a consultant neurological consultant, who eventually confirmed Alzheimer's Disease. The delay in an accurate diagnosis delayed the start of drugs treatment. We have sought a second opinion as our confidence in the diagnosis was dented very significantly. So in summary, my partner has been battling terminal cancer for 11 years and now has moderate Alzheimer's Disease. He has multiple other health issues that are in the main the consequences of extensive cancer treatment. Stephen receives great oncology health care but other support is virtually non existent. We want government to put in place decent social care support for those with dementia and their carers.
Trevor
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
Share your diagnosis story
Share your diagnosis experiences with us, so we can show decision makers the realities and issues people are facing.