Dementia Support Line
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If you're ready to tell your story, we want your voice to be heard.
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?
It will take society to beat dementia. We’ll take your stories to those who need to hear them most, to help make dementia the political priority it deserves to be.
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...
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...
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...
My mum was diagnosed with dementia 2017,she passed...
My mam passed away with vascular dementia my 2brothers are living in now and iv just been diagnosed with vascular dementia. I was given a handful of literature and...
My very young grandson told his teacher, "My granddad's brain is broken. They are trying to mend it, but if they can't, they are going to give him a new one instead, "...
My mum got her diagnosis over 5 years ago. She asked...
Both my grandfathers were affected by dementia. My...
I had to persuade my nans GP that something was...
My husband and I are currently going through the 3rd dementia diagnosis in 9yrs...I see myself as a Dementia Diagnosis Ninja. I know how to navigate the 'system,' I...
My husband and I are currently going through the 3rd dementia diagnosis in 9yrs...I see myself as a Dementia Diagnosis Ninja. I know how to navigate the 'system,' I...
In April 2023 my nan was with vascular dementia after...
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
My mum was diagnosed with dementia 2017,she passed away 4/5/24. It took me 7yrs to receive any help with my mum, and it all came to late, we were only aware about different benefits she could claim,no-one told us nothing
Carolann
My mam passed away with vascular dementia my 2brothers are living in now and iv just been diagnosed with vascular dementia. I was given a handful of literature and told to go to my gp.im in denial at moment with no help and im not really a mixer
Margaret
My very young grandson told his teacher, "My granddad's brain is broken. They are trying to mend it, but if they can't, they are going to give him a new one instead, " The words of babes.
Margaret
My mum got her diagnosis over 5 years ago. She asked to be tested herself, because she was embarrassed by forgetting names. Initially a few agencies called by to offer support and help, but she didn't want/need it. COVID hit, she was left on her own, we lived too far away to offer much help
It's a degenerative disease, but doesn't seem to be classed as a disease, it's a social situation. 2 years ago she blatantly wasn't coping, but she was deemed to have capacity, so no-one cared, when she refused help. Realistically this seems to mean you can self neglect until you either have an accident and need hospitalizing or die. She stopped remembering medication, forgot to eat, forgot who we were, hallucinations about people living in her house. At this point we had to trick her into a care home. Social services were not interested in helping, because she didn't want help. It is so frustrating as a family member.
She was malnourished, but is now warm, fed and happy in her own way.
In the meantime we have cleared 5 skips from her house, 30 plus bin bags of clothes to charity, 3 removals vans of furniture etc have gone to auction, and we now have to sell her pride and joy to pay for her care. She would be heartbroken. Every time we visit a little more of her seems to disappear, 😭.
This is a disease, not a social situation. People should not have to lose everything because of it. Carers are worth their weight in gold.
It's a degenerative disease, but doesn't seem to be classed as a disease, it's a social situation. 2 years ago she blatantly wasn't coping, but she was deemed to have capacity, so no-one cared, when she refused help. Realistically this seems to mean you can self neglect until you either have an accident and need hospitalizing or die. She stopped remembering medication, forgot to eat, forgot who we were, hallucinations about people living in her house. At this point we had to trick her into a care home. Social services were not interested in helping, because she didn't want help. It is so frustrating as a family member.
She was malnourished, but is now warm, fed and happy in her own way.
In the meantime we have cleared 5 skips from her house, 30 plus bin bags of clothes to charity, 3 removals vans of furniture etc have gone to auction, and we now have to sell her pride and joy to pay for her care. She would be heartbroken. Every time we visit a little more of her seems to disappear, 😭.
This is a disease, not a social situation. People should not have to lose everything because of it. Carers are worth their weight in gold.
Liesl
Both my grandfathers were affected by dementia. My dad, a second world war veteran, didn't live long enough to show symptoms, passing with a heart attack at age 49. I am 75 and have had "Alzheimer's" for several years, nearly a decade, now. Of course I have received a diagnosis and been given "medication", but there is now way to show whether or not the brain is affected by the drug. I used to be an aerobatic flying instructor and champion competition pilot. I still have good situational awareness, but now I am not allowed even to drive a car. I am nowadays driven everywhere by my wife, and am clearly able to see risky situations arising no later than she does, but they still won't even test my "situational awareness" to see if could actually drive safely. Ho hum ;-(
Alan
I had to persuade my nans GP that something was wrong, after doing a mini assessment she concluded all was fine, I had to say that I would return with her day after day to evidence that there would be different outcomes each time the test was done! In the end a referral was made to memory services and we eventually got a diagnosis of Alzheimer's Disease. My advice to anyone would be to be persistent, you know your loved one the best! My nan lived well with dementia for 10 years, had it not been for the pandemic, I think she would still be here now, we lost her to Covid in 2021. I know work for the Alzheimer's Society so I can use what I learnt to support others on their journey.
Beccy
My husband and I are currently going through the 3rd dementia diagnosis in 9yrs...I see myself as a Dementia Diagnosis Ninja. I know how to navigate the 'system,' I know what services are available in different locations (incl getting a private MRI scan to fast-track diagnosis) and I know that everyone is different in their reaction to a diagnosis. We've had the fighter (this won't beat me), the worrier (I know something is wrong) and we now have the denier (there's nothing wrong with me - it's you). Diagnosis helps others to know what they are dealing with - potential carers, medical staff and groups. A diagnosis didn't make our life easier - you still have to deal with the everyday roller-coaster. One change: professionals need to get professional - the multiple calls, follow-ups because nothing is connected - nothing gets done, is enough to drive anyone over the edge. I can deal with the person who has the dementia - I've learnt - don't try and make everything perfect. Good enough is OK.
Manjit
My husband and I are currently going through the 3rd dementia diagnosis in 9yrs...I see myself as a Dementia Diagnosis Ninja. I know how to navigate the 'system,' I know what services are available in different locations (incl getting a private MRI scan to fast-track diagnosis) and I know that everyone is different in their reaction to a diagnosis. We've had the fighter (this won't beat me), the worrier (I know something is wrong) and we now have the denier (there's nothing wrong with me - it's you). Diagnosis helps others to know what they are dealing with - potential carers, medical staff and groups. A diagnosis didn't make our life easier - you still have to deal with the everyday roller-coaster. One change: professionals need to get professional - the multiple calls, follow-ups because nothing is connected - nothing gets done, is enough to drive anyone over the edge. I can deal with the person who has the dementia - I've learnt - don't try and make everything perfect. Good enough is OK.
Manjit
In April 2023 my nan was with vascular dementia after waiting months for an assessment by the local adult memory team when we received my nans diagnosis we was informed there was no medication for this form of dementia and we was left to deal with things as a family my grandad was my nans main carer although I did offer help and support to both my nan and grandad as much as I could if only we knew a mouth dementia uk we wouldn’t of felt like we was on our own unfortunately we then lost my nan in her sleep in July due to how quickly the dementia progressed. The British government really need to make dementia a priority so other family’s and dementia patients get the help and support that is much needed
Emma
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?