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.
Hello, I try to put my story of "Self Diagnosis" being "Have I got dementia?"
I start with two facts:
a) My Mother was as I am at this age, 70's onwards, my father ...
It took two years to get a diagnosis for my lovely husband. It devastated our family. we get a call every 8 weeks to see how we are getting on from AGE UK I take Brian ...
GP was totally ineffective prior to my dads diagnosis.Signs were there and instead of the GP proactively doing something about it they did nothing. After phone calls fr...
My elder sister was eventually diagnosed with early-onset dementia in 2000, six years after her symptoms began when she was 54. I battled to get her onto medication, h...
I was 14 when my dad was diagnosed...
I was told I had vascular dementia after an MRI scan of my brain, having a stroke about a year before. I was given information about how to cope, which was very useful....
My husband was diagnosed with Alzh...
My husband had vascular dementia ...
My parents lived at home together....
My family and I noticed changes in my wife's usually smart mental capabilities in 2015 and despite having two poor results for memory tests conducted by our GPs it to...
My mum was diagnosed in about 2015...
My dad fell down the stairs in a freak accident and had a traumatic head injury after 8 months of fighting hospitals to get him the best care and support he finally cam...
Hello, I try to put my story of "Self Diagnosis" being "Have I got dementia?"
I start with two facts:
a) My Mother was as I am at this age, 70's onwards, my father just took over caring for her so, condition not investigated by NHS & etc.
She died in her mid 90's having a "Complete loss of identity" though official cause of death was Pneumonia!
b) I have Asperger's Syndrome, that is, for me, like having two brains, one observing the other.
Non-the-less, I've had a varied and interesting life, in engineering, computing and voluntary work.
I live alone and have done so since 1999
Troubling Times Start:
Was it a year back, maybe more that I started to realise I could not remember "Yesterday", or what I had just done, my Asperger's was telling me "Forgotten something" (Don't know what) or "What did I do just now?"
I asked Doctor what was wrong with me, I had next to no response, mainly based around "At your age..." etc.
Again and Again I've asked that question until finally, approx 8 months back I had an appointment for a MRI of my brain and what an awful experience it was, resulted in a "Blurred Image" and no real result.
Back to doctor for results, garbled reply and "I want it done again in Leicester and Not Burton -on-Trent"...
That, after 8 or so months, is to happen on Monday!
However, what I do want to point out...
It is extremely difficult to have a diagnosis of Dementia when you are alone!
After all, if you have Dementia then, by assocation, you've "Lost your memory" so you are unable to realise "Something Wrong" and ask for a diagnosis!
I start with two facts:
a) My Mother was as I am at this age, 70's onwards, my father just took over caring for her so, condition not investigated by NHS & etc.
She died in her mid 90's having a "Complete loss of identity" though official cause of death was Pneumonia!
b) I have Asperger's Syndrome, that is, for me, like having two brains, one observing the other.
Non-the-less, I've had a varied and interesting life, in engineering, computing and voluntary work.
I live alone and have done so since 1999
Troubling Times Start:
Was it a year back, maybe more that I started to realise I could not remember "Yesterday", or what I had just done, my Asperger's was telling me "Forgotten something" (Don't know what) or "What did I do just now?"
I asked Doctor what was wrong with me, I had next to no response, mainly based around "At your age..." etc.
Again and Again I've asked that question until finally, approx 8 months back I had an appointment for a MRI of my brain and what an awful experience it was, resulted in a "Blurred Image" and no real result.
Back to doctor for results, garbled reply and "I want it done again in Leicester and Not Burton -on-Trent"...
That, after 8 or so months, is to happen on Monday!
However, what I do want to point out...
It is extremely difficult to have a diagnosis of Dementia when you are alone!
After all, if you have Dementia then, by assocation, you've "Lost your memory" so you are unable to realise "Something Wrong" and ask for a diagnosis!
Aleyn
It took two years to get a diagnosis for my lovely husband. It devastated our family. we get a call every 8 weeks to see how we are getting on from AGE UK I take Brian to a centre once a week which we pay for that is my time 5 hours a week & all I want to do is get some rest....... it's very hard. If I could afford to take Brian another day I would! Family help when they can. it's lonely for the carer & takes over your life.
Jean
GP was totally ineffective prior to my dads diagnosis.Signs were there and instead of the GP proactively doing something about it they did nothing. After phone calls from my sister and myself a plan of action was put in place. This was four months after first phone calls were made. Dads behaviour had been strange for years before and the GP knew about it, but did nothing. Psychiatrist diagnosed dad with dementia, paranoia and psychosis. Diagnosis is very important as it enables families to care for their loved one better and hopefully get some help. People should not have to fight for a diagnosis and should not have to sell their homes to pay for care. That’s heartbreaking for families.
Paula
My elder sister was eventually diagnosed with early-onset dementia in 2000, six years after her symptoms began when she was 54. I battled to get her onto medication, having spoken on behalf of The Alzheimer's Society at the Judicial Review into the first medications to alleviate this condition. Sadly, the Judicial Review then stated that these medications could only be prescribed once people had deteriorated, a crazy decision which was rightly overturned four years later. During those four years we paid for private prescriptions while her consultant at the National Hospital for Neurology continued to monitor her under the NHS. Sadly, due to them being prescribed so much later, they were only effective for about 22 months. We looked after my sister at our home for three and a half years until it became too much and she had to go into a care home, which was difficult as she was still under the age of 65. She was there for about 18 months until they said her behaviour was "too challenging" and they could not keep her there. We managed to find another care home where she lived until her death in 2008, thirteen years after her dementia began. I have seen the changes that have slowly taken place since then but dementia is still underfunded and under-researched. This devastating disease affects not just those who suffer from it but also all those who care for them and its impact is huge. It should be a top priority.
Hazel
I was 14 when my dad was diagnosed and it was so confusing seeing him slowly stop being able to parent me. Although at first I didn’t comprehend what was going to happen to him, by having a diagnosis I was able to understand why he was acting the way he was and that he could not control his behaviour. Dementia is not a natural part of ageing and the impact it has on society and people like me, my dad and my family are truly devastating. I work first hand with diagnosing people with dementia, and I cannot tell you the impact the lack of funding has had on waiting times and jeopardising patient care. I’d like the government to understand this isn’t going away and we need to act now to prioritise dementia diagnosis and dementia care in this country.
Sarah
I was told I had vascular dementia after an MRI scan of my brain, having a stroke about a year before. I was given information about how to cope, which was very useful. I have set up LPA's now and free to drive a car, although license has to be renewed every year.
I attend dementia cafes, so meet new people quite regularly. I take much medication, mainly to avoid getting another stroke.
I attend dementia cafes, so meet new people quite regularly. I take much medication, mainly to avoid getting another stroke.
Peter
My husband was diagnosed with Alzheimer’s in 2012 the specialist was kind and understanding.
But the first few years were not to bad we could still do things together,and we had help.
But my husband was taken into hospital with chest infection and on trying to put him on a standing swivel he broke his humorous bone in his arm.
From this happening he stopped walking and we had to have carers in 4 times a day seven days a week.Our home was adapted for he needs.
It was very stressful going from having myself and 1 carer and our daughter looking after him.
Some carers were very good some were awful, and in one month alone we had 38!carers.
Our social worker was excellent, plus the district nurses.
but i had to fight for a lot of things the proper pads etc . and with the care company over his care.
He was double in continent and we had to liquidise his food and was having seizures.
Every morning he would give me a lovely smile and a kiss and at night. We have a strong faith and I had a lot of love and support from my christian family and a local hospice.
Sadly he Died in 2021 i miss him more each day i was lucky to have him at home and though it was hard I would do it again.
Every case is different my husband was gentle and i have
friends who’s partners were not and they had to go into care.
More should be done in training carers and help in the home and social care.
People should not lose their houses and savings even being at home cost over £800 pounds a week which we contributed to.
I would gladly pay more to social care and the NHS for better training because a lot of professional staff do not understand Alzheimer’s.
But the first few years were not to bad we could still do things together,and we had help.
But my husband was taken into hospital with chest infection and on trying to put him on a standing swivel he broke his humorous bone in his arm.
From this happening he stopped walking and we had to have carers in 4 times a day seven days a week.Our home was adapted for he needs.
It was very stressful going from having myself and 1 carer and our daughter looking after him.
Some carers were very good some were awful, and in one month alone we had 38!carers.
Our social worker was excellent, plus the district nurses.
but i had to fight for a lot of things the proper pads etc . and with the care company over his care.
He was double in continent and we had to liquidise his food and was having seizures.
Every morning he would give me a lovely smile and a kiss and at night. We have a strong faith and I had a lot of love and support from my christian family and a local hospice.
Sadly he Died in 2021 i miss him more each day i was lucky to have him at home and though it was hard I would do it again.
Every case is different my husband was gentle and i have
friends who’s partners were not and they had to go into care.
More should be done in training carers and help in the home and social care.
People should not lose their houses and savings even being at home cost over £800 pounds a week which we contributed to.
I would gladly pay more to social care and the NHS for better training because a lot of professional staff do not understand Alzheimer’s.
Sylvia
My husband had vascular dementia for which there is no treatment and is a very hard diagnosis. When the dementia took over he would be completely out of it, I had to give him medication, his diabetes injection, wash him, toilet him and every else involved so I became his carer not his wife with no help from any source. The picture shows how we were.
Kathleen
My parents lived at home together. My Dad had other issues and the dementia was overlooked initially because of this. My mother also had dementia which we were not really concentrating on as Dad was getting worse. He needed morphine regularly for face pains. As a result of Mum not having a diagnosis she was giving him way too much morphine daily as not aware. Though times for family. Once we had diagnosis of dementia for both the help we received was amazing. From social workers, mental health department, consultants, funding. You feel alone and scared as a carer until the diagnosis is given and help can be sought.
Julie
My family and I noticed changes in my wife's usually smart mental capabilities in 2015 and despite having two poor results for memory tests conducted by our GPs it took over a year to get a reference for a brain scan which eventually confirmed Alzheimer's disease and vascular dementia. The diagnosis was the key to getting available treatment and care and she was able to have a meaningful few more years of life until she died in January 2024.
Michael
My mum was diagnosed in about 2015/16 with alzimers . It took a while before we got appointment through for mum to be tested . And then we tried to get things set up as I worked and lived at home with mum. It takes to long to get a social worker . Only for mums granddaughter sorting it out did we eventually get things sorted . I was mums main carer and when I went to work which I worked 3 nights a week mums granddaughter was her night carer when I was in work . I looked after my mum for 8 yrs at home and it was hard sometimes but I wouldn’t have changed a thing . Sadly mum passed away at home peacefully on 3/2/2022 . Mum was 93 yrs young . The system is too slow and the government really needs to step up and give faster help with people with dementia and there carers . Also quicker diagnosis. Some people might say it’s all the red tape . No sorry I don’t believe that it’s needs to be quicker and also more money needs to be put into trying to find a cure . After all people who have or had dementia have paid tax and insurance most of there lives and need to be looked in there later stages of life . Unpaid carers save the government millions . So the government needs to put that money into quicker diagnosis and invest invest invest into finding a cure . I wouldn’t have changed a thing looking after my mum at home for 8 yrs with alzimers such a very cruel desease and it’s devastating seeing ur loved one slowly deteriorating day by day . But I can honestly say I would do it all over again . Because I miss my mum every single day even though she had Alzimers . Love and miss you mum forever an always .
Sam
My dad fell down the stairs in a freak accident and had a traumatic head injury after 8 months of fighting hospitals to get him the best care and support he finally came home. Dad then starting changing luckily I had been a carer for years and knew he was starting to forget things and I knew it wasn't just the head injury that was presenting. I had to fight for 8 months to eventually het him assessed as the doctors kept saying its hard to disassociate if he has a head injury or dementia. A year later he was diagnosed and started on medication to help slow down the effects and to calm him down. Throughout looking after my dad for 8 years, 3 of them he lived with us until he unfortunately died I don't feel like he get enough help and care and that I had to fight doctors, dwp and health care professionals to get him the best equipment, help and medication. Like anyone who knows caring for a loved one with dementia takes so much energy and part of yourself so to have to fight to get him the best help is so draining.
Sarah
Share your diagnosis story
Share your diagnosis experiences with us, so we can show decision makers the realities and issues people are facing.