Dementia Support Line
Share your story
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.
As a relative I found that Drs didn't understand how well dementia sufferers can mask symptoms and appear ok if only seen briefly. I was made to feel as if I was...
Well, I am now aged 75 and have Alzheimer's... but it...
It took my Dad over two years to get a diagnosis. When it came, it was almost entirely down to my Mum pushing our GP to engage. For far too long he just didn't want to...
Sandra was initially treated for depression before a...
I noticed something wasn’t quite right when Tony started having memory loss. Since Tony’s hearing had been getting worse, we thought it might be tied in with that....
Me and dad have always been very close, we bonded around rugby and football. We joined a running club together, did a half marathon together, and the London marathon...
I was 46 years old when I was diagnosed. I was...
We began to think something was wrong when dad started misplacing items like car keys, when he couldn’t find his way round routes that he should know. Then he was...
My mother has had terrible memory problems for three years before she was diagnosed with Alzheimers related Dementia in October 2023. My husband and I have been...
Please read, this is exactly what happened with Bud....
As a relative I found that Drs didn't understand how well dementia sufferers can mask symptoms and appear ok if only seen briefly. I was made to feel as if I was gaslighting my relative and it was tough saying difficult things in front of her because Drs wouldn't speak to me alone. I'm glad I persisted because, now, both of our experiences have been validated, and mum is on medication and has services available to her.
Aimee
Well, I am now aged 75 and have Alzheimer's... but it seems rather odd that you are asking me to state when I received the diagnosis, because the actual date, year even, are not things that I can specifically recall. The "prioritisation" (over what else) of dementia diagnosis is not really the issue. The basis of the dementia problem is that our brains are not complex enough to contain and recall all the events that we have experienced over what are, currently, very long lifetimes. Are there any other animals on the planet that live for more than 60 or 70 years?
When you computer runs out of memory, you can plug in a "bigger" memory stick. What we should be seeking to treat Alzheimers is some way of adding greater internal capacity to our own brains; something that nobody seems to consider. I can remember exactly the route, and its appearance, that I used to walk 68 years ago to get to my primary school in Sussex, but I could not tell you in any great detail what I did yesterday.
The thing that will really help sufferers of Alzheimer's, is a brain capacity enlargement. However, I don't think that solution is really being addressed.
When you computer runs out of memory, you can plug in a "bigger" memory stick. What we should be seeking to treat Alzheimers is some way of adding greater internal capacity to our own brains; something that nobody seems to consider. I can remember exactly the route, and its appearance, that I used to walk 68 years ago to get to my primary school in Sussex, but I could not tell you in any great detail what I did yesterday.
The thing that will really help sufferers of Alzheimer's, is a brain capacity enlargement. However, I don't think that solution is really being addressed.
Alan
It took my Dad over two years to get a diagnosis. When it came, it was almost entirely down to my Mum pushing our GP to engage. For far too long he just didn't want to know - even though we strongly suspected something was wrong. Our concerns were fobbed off with inconclusive memory tests and euphemistic language. Eventually, we insisted on a scan, which revealed a diagnosis of Alzheimer's disease and Vascular Dementia. Even then, the resultant consultation with the GP was vague and euphemistic. Again, my Mum pushed him for clarity, and he ended up shouting at her: 'What I'm saying is your husband has dementia.'
Once we had the diagnosis, we were able to stop fighting the system for a diagnosis and focus far more clearly on the challenges we faced, and how best to manage them. Although there were still many more fights ahead with different, disconnected parts of the system . . .
Once we had the diagnosis, we were able to stop fighting the system for a diagnosis and focus far more clearly on the challenges we faced, and how best to manage them. Although there were still many more fights ahead with different, disconnected parts of the system . . .
Tom
Sandra was initially treated for depression before a doctor noticed symptoms of Alzheimer’s and sent her to get scans. However, because of lockdown conditions, the results did not come until the following year.
She was diagnosed with early onset Alzheimer’s via video call in June 2021.
The first few steps were hard because she went through various scans before the diagnosis. She is now 100% dependent on me, and since the diagnosis, I feel like she has been forgotten. Every step is like banging your head against a brick wall.
With each stage of claiming for anything, there is a waiting period, and each waiting period puts you into arrears with your mortgage and things like that.
I feel sorry for people like myself that are in the same sort of situation because it is a hard slog because you are taking it from all sides while losing the person you love.
I'm not of retirement age yet and depending on how fast Sandra goes down, which is a practicality that you have to face up to that I'm slowly losing her, I dare say I will have to go back to work as life does go on.
But all the while I can grab every moment and live day to day I do, for her.
She was diagnosed with early onset Alzheimer’s via video call in June 2021.
The first few steps were hard because she went through various scans before the diagnosis. She is now 100% dependent on me, and since the diagnosis, I feel like she has been forgotten. Every step is like banging your head against a brick wall.
With each stage of claiming for anything, there is a waiting period, and each waiting period puts you into arrears with your mortgage and things like that.
I feel sorry for people like myself that are in the same sort of situation because it is a hard slog because you are taking it from all sides while losing the person you love.
I'm not of retirement age yet and depending on how fast Sandra goes down, which is a practicality that you have to face up to that I'm slowly losing her, I dare say I will have to go back to work as life does go on.
But all the while I can grab every moment and live day to day I do, for her.
Paul
I noticed something wasn’t quite right when Tony started having memory loss. Since Tony’s hearing had been getting worse, we thought it might be tied in with that.
But I was concerned that it wasn’t just hearing loss that was causing Tony’s symptoms.
Tony didn’t acknowledge the problem, and it went on for months.
Until one day, Tony didn’t remember something he should have. I confronted him, and he finally admitted that he knew something was off. That was when we knew we had to do something.
I was worried that doctors wouldn’t believe me at the time – Tony was quite switched on, and still very articulate.
Tony had two assessments followed by a scan, and in March 2020 he was diagnosed with Alzheimer’s disease. We were very shocked.
Getting the diagnosis was really tough, but we got no support due to the pandemic.
After Tony’s diagnosis, I felt somewhat relieved. Most people were very supportive about it, though we did have one or two crass reactions.
Now, Tony finds it difficult to process new information, and he can get anxious if he thinks he’ll be separated from me. His physical condition has also deteriorated.
I felt sad about this for a very long time, as it’s changed the dynamic of our relationship. Now everything falls on me.
It’s a kind of bereavement of expectation. Everything we planned to do in retirement has been taken away from us.
But I do believe it’s much better to get a diagnosis, than to not know what’s wrong.
But I was concerned that it wasn’t just hearing loss that was causing Tony’s symptoms.
Tony didn’t acknowledge the problem, and it went on for months.
Until one day, Tony didn’t remember something he should have. I confronted him, and he finally admitted that he knew something was off. That was when we knew we had to do something.
I was worried that doctors wouldn’t believe me at the time – Tony was quite switched on, and still very articulate.
Tony had two assessments followed by a scan, and in March 2020 he was diagnosed with Alzheimer’s disease. We were very shocked.
Getting the diagnosis was really tough, but we got no support due to the pandemic.
After Tony’s diagnosis, I felt somewhat relieved. Most people were very supportive about it, though we did have one or two crass reactions.
Now, Tony finds it difficult to process new information, and he can get anxious if he thinks he’ll be separated from me. His physical condition has also deteriorated.
I felt sad about this for a very long time, as it’s changed the dynamic of our relationship. Now everything falls on me.
It’s a kind of bereavement of expectation. Everything we planned to do in retirement has been taken away from us.
But I do believe it’s much better to get a diagnosis, than to not know what’s wrong.
Caroline
Me and dad have always been very close, we bonded around rugby and football. We joined a running club together, did a half marathon together, and the London marathon together.
As a family we noticed something wasn’t quite right with dad in 2018. Dad was becoming forgetful and misplacing things. One time we found a pair of socks in the fridge. Things being thrown in the bin like utensils. Stuff kept going missing or being found in weird places.
I wrote a letter to the local GP, highlighting the issues. It took several attempts at engaging with the doctors to get them to take notice. In 2022 Dad ended up in hospital at Nottingham, had a scan, and a month later – after 4 years, he was finally diagnosed with Alzheimer’s.
He’s regressed and can barely talk but he’s still a very happy man.
Honestly, diagnosis came as a relief. We were able to access proper resources and support dad, have certain types of conversations with him.
After he was diagnosed, Alzheimer’s Society were in touch within weeks, signposting us to services, providing information, advice etc.
Mum fell into the carer role. Dad is currently incontinent. He doesn’t know how to use the toilet or clean himself.
This has all taken a huge toll on mum, who has known dad for 64 years.
It very much feels like a ‘living grief’. It’s a very different type of grief. It’s really hard. When dad eventually passes in a way it’ll be a relief because he’ll no longer in pain. Its so sad and awful.
As a family we noticed something wasn’t quite right with dad in 2018. Dad was becoming forgetful and misplacing things. One time we found a pair of socks in the fridge. Things being thrown in the bin like utensils. Stuff kept going missing or being found in weird places.
I wrote a letter to the local GP, highlighting the issues. It took several attempts at engaging with the doctors to get them to take notice. In 2022 Dad ended up in hospital at Nottingham, had a scan, and a month later – after 4 years, he was finally diagnosed with Alzheimer’s.
He’s regressed and can barely talk but he’s still a very happy man.
Honestly, diagnosis came as a relief. We were able to access proper resources and support dad, have certain types of conversations with him.
After he was diagnosed, Alzheimer’s Society were in touch within weeks, signposting us to services, providing information, advice etc.
Mum fell into the carer role. Dad is currently incontinent. He doesn’t know how to use the toilet or clean himself.
This has all taken a huge toll on mum, who has known dad for 64 years.
It very much feels like a ‘living grief’. It’s a very different type of grief. It’s really hard. When dad eventually passes in a way it’ll be a relief because he’ll no longer in pain. Its so sad and awful.
Paul
I was 46 years old when I was diagnosed. I was originally told I’m too young to have dementia, my issues were all alcohol related etc. I had 3 MRIs before his diagnosis.
Finally, I got diagnosed with Lewy body dementia with Parkinson’s and was told I had 5-8 years left to live.
In a way, life started when I got my diagnosis. If I didn’t get it, I’d still be at work, I’d still be thinking “I’d love to do that when I retire” but I know now I’m on “borrowed time”, so I do things now.
I think it's harder for a younger person to have dementia because society thinks you need to be 65 and over to have dementia. If you’re below this age you’re too young to have dementia and no one believes you because it couldn’t possibly happen to you.
Young onset dementia has meant I have lost my job, my place in society, my position as the breadwinner in my family. I am witnessing my wife struggle to pay bills.
When I was working, I brought home almost £3,000 per week. Now I can’t work and on benefits, on £250 per week. It’s a massive culture shock. The money is pittance.
The government need to look at the social care/care aspect of dementia. it’s my wife that needs support more than me. My family need bereavement counselling. We can’t cover up the truth of dementia. It’s a terminal condition and there is no positive outlook on it.
Finally, I got diagnosed with Lewy body dementia with Parkinson’s and was told I had 5-8 years left to live.
In a way, life started when I got my diagnosis. If I didn’t get it, I’d still be at work, I’d still be thinking “I’d love to do that when I retire” but I know now I’m on “borrowed time”, so I do things now.
I think it's harder for a younger person to have dementia because society thinks you need to be 65 and over to have dementia. If you’re below this age you’re too young to have dementia and no one believes you because it couldn’t possibly happen to you.
Young onset dementia has meant I have lost my job, my place in society, my position as the breadwinner in my family. I am witnessing my wife struggle to pay bills.
When I was working, I brought home almost £3,000 per week. Now I can’t work and on benefits, on £250 per week. It’s a massive culture shock. The money is pittance.
The government need to look at the social care/care aspect of dementia. it’s my wife that needs support more than me. My family need bereavement counselling. We can’t cover up the truth of dementia. It’s a terminal condition and there is no positive outlook on it.
Paul
We began to think something was wrong when dad started misplacing items like car keys, when he couldn’t find his way round routes that he should know. Then he was diagnosed with Parkinson’s with Lew Bodies Dementia.
In one year we went from being concerned about dad so taking him to the hospital to him living in a care home. Things progressed quickly. Now, he often doesn’t recognise family.
Mum is completely heartbroken about everything. I’ve tried to keep the family right, and everything right for dad. I don’t have a relationship with dad left because there’s nothing left of him due to the condition.
The impact on my children is real too. I may have to have counselling for my kids due to the impact.
I try not think about it. I try to distract myself with research and looking after the family. As much as I try to brush it to the side, it only works for so long. Some days I just cry non-stop.
If I stop and think about what’s happening to my dad, I can’t bear it. it’s too hard. Physically he looks fine, but he is not.
In one year we went from being concerned about dad so taking him to the hospital to him living in a care home. Things progressed quickly. Now, he often doesn’t recognise family.
Mum is completely heartbroken about everything. I’ve tried to keep the family right, and everything right for dad. I don’t have a relationship with dad left because there’s nothing left of him due to the condition.
The impact on my children is real too. I may have to have counselling for my kids due to the impact.
I try not think about it. I try to distract myself with research and looking after the family. As much as I try to brush it to the side, it only works for so long. Some days I just cry non-stop.
If I stop and think about what’s happening to my dad, I can’t bear it. it’s too hard. Physically he looks fine, but he is not.
Gail
My mother has had terrible memory problems for three years before she was diagnosed with Alzheimers related Dementia in October 2023. My husband and I have been looking after her financial situation for this whole period. If she had had been diagnosed earlier I believe she would have been better off. I took her to doctors for three years regarding memory loss and impairment of processing information but to no avail.
Mary
Please read, this is exactly what happened with Bud. Nobody would diagnose him with dementia, even neurologist and PCP wouldn’t even remove his driving license.
But when he was in Ponca Rehab they saw his behaviour, movement and agitation and started him on dementia meds. However still no diagnosis.
Looking back, no wonder he was falling all the time, and slow stiff movements.(Parkinson’s)
It took him being inpatient for nearly a month in November in Integris Health Ponca Hospital and then a week in Hillcrest Hospital for the Doctors to diagnose with Lewy Body Dementia.
So my daughter and I have been through hell but PCP did not give a fig. I was so concerned near the end that he would assault and hurt us when he is agitated. The home health nurse had also voiced her concerns about this to PCP.
Fortunately I loved Bud so much and he was well taken care of at home but it was a lot.
But when he was in Ponca Rehab they saw his behaviour, movement and agitation and started him on dementia meds. However still no diagnosis.
Looking back, no wonder he was falling all the time, and slow stiff movements.(Parkinson’s)
It took him being inpatient for nearly a month in November in Integris Health Ponca Hospital and then a week in Hillcrest Hospital for the Doctors to diagnose with Lewy Body Dementia.
So my daughter and I have been through hell but PCP did not give a fig. I was so concerned near the end that he would assault and hurt us when he is agitated. The home health nurse had also voiced her concerns about this to PCP.
Fortunately I loved Bud so much and he was well taken care of at home but it was a lot.
Denise
Share your diagnosis story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?