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.
One of my sisters said I was forgetting things sometimes. I began to realise she was right. I was diagnosed at the bottom of the ladder. I started to buy lots of...
My story is about my beautiful dad. Dad was diagnosed...
This disease has a massive impact on families NHS and social Care .
Caring for someone with dementia is 24/7 job and extremely demanding mental health is so under...
I was concerned that my husband's memory was deteriorating sorted advice from GP.4yrsago was referred to memory clinic and told to contact them about further...
My husband was diagnosed with frontal lobe dementia...
"You're not David," my mother said to me. "David is my little baby and he's lying at home in his cot, waiting to be fed. But they won't let me out and he'll starve if...
My lovely clever husband was diagnosed at 65.
We had a house in Spain and private health cover so scans were carried out quickly and medication prescribed.
Took...
My beautiful mum June, beautiful inside and out. The...
My mum was diagnosed with Lewy Body dementia but not before a long period of personality change that we didn’t initially understand and then a very time getting her...
Even if you are able to obtain C.H.C. it is still not enough to pay nursing home fees. If your wife is in a home it is near on impossible to move her because the home...
My wife was diagnosed with Alzheimers around 8 years ago. I first noticed a problem when we were in Madeira, thought that we was in the local area where she lived ...
My mother was referred to the memory clinic and after a few verbal and written tests was diagnosed with vascular dementia. That was it, no support by anyone other than...
One of my sisters said I was forgetting things sometimes. I began to realise she was right. I was diagnosed at the bottom of the ladder. I started to buy lots of crossword books as I had previously enjoyed them. I then started watching all the quiz shows . I do very well with them most of the time and enjoy doing them. Basically I try to help myself to make my mind active.
Hazel
My story is about my beautiful dad. Dad was diagnosed with vascular dementia and Alzheimer’s in September 2019. There had been signs for a number of years that Dads memory was slowly getting worse. At this stage I feel that we did not have enough information or understanding of the prognosis or what support was available to us. Once Dad was assessed we realised how ill he was and the significance of the illness, Dad had done an incredible job of managing the illness using different ways to try and remember people’s names. Once Dad was diagnosed the support and information made available to us by the Juniper clinic in Birmingham was very good. Information on additional benefits, scans, medication and other support in relation to groups for Dad to attend to support his memory. The team were always available to family and any changes in dad’s needs were met with reviews and discussions about how to support dad and the family to manage those changes. In November 2020 during the chaos of COVID Dad became very unwell he was admitted to hospital with pneumonia and sepsis this accelerated dads dementia and after a long spell in hospital it was decided that he would need residential care. We were incredibly fortunate to find a wonderful residential and nursing home Neville Williams which was very close to all the family which meant dad had visitors everyday. We luckily had another 3 years with dad he was placed on the specialist dementia unit and the team of staff supported dad and us as a family through some very difficult times. Thankfully the expertise of the team supported all of us to be prepared for what was in front us keeping dads safety and dignity at the heart of his care. We are so thankful to the wonderful team at Neville Williams and dad sadly passed away with all his family at his side on Sunday 22nd October 2023. Rest in peace dad love you.
Tom Wren 03.01.1937 - 22.10.2023
Photo Dad and my husband Ryan
Tom Wren 03.01.1937 - 22.10.2023
Photo Dad and my husband Ryan
Ann
This disease has a massive impact on families NHS and social Care .
Caring for someone with dementia is 24/7 job and extremely demanding mental health is so under valued in this gov
Pls can you look into extra funding and support.
People have to leave jobs ... I myself was a few pounds over the carers allowance claim .
Ttefere no money from gov I used to work 3 days and had to drop a day to be a carer. Now mum's passed I am on a income of 2 days a week and cannot find another job
Caring for someone with dementia is 24/7 job and extremely demanding mental health is so under valued in this gov
Pls can you look into extra funding and support.
People have to leave jobs ... I myself was a few pounds over the carers allowance claim .
Ttefere no money from gov I used to work 3 days and had to drop a day to be a carer. Now mum's passed I am on a income of 2 days a week and cannot find another job
Jennifer
I was concerned that my husband's memory was deteriorating sorted advice from GP.4yrsago was referred to memory clinic and told to contact them about further deteriorating symptoms. Iwas surprised that the doctor was rather uninformed about dementia and could not guarantee a referral immediately after talking to my husband?
Beverly
My husband was diagnosed with frontal lobe dementia at the age of 61., he is now 67. I was aware of Alzhiemas & heard of Vascular Dementia but not this type
It came as a shock to the family but, by the time my husband had got his diagnosis, he was not in a position to comprehend it. This is a regret I live with as we have never been able to discuss the illness
It took me months going back & forth to the Drs with my husband until we managed to see a Dr that had Dementia training, then the ball started rolling, still took another few months to see Specialists, have scans then diagnoses.
During the time of waiting, as a family, we suffered as we had no idea what was wrong with my husband. We felt in limbo, as no one tries to help you untill these a diagnoses, then we became overwhelmed with what help we could get.
I feel early diagnosed is the key along with more knowledge & more trained GP's to spot the signs & quicker referral rimes
Families should not have to suffer a long wait to get a diagnosed
It came as a shock to the family but, by the time my husband had got his diagnosis, he was not in a position to comprehend it. This is a regret I live with as we have never been able to discuss the illness
It took me months going back & forth to the Drs with my husband until we managed to see a Dr that had Dementia training, then the ball started rolling, still took another few months to see Specialists, have scans then diagnoses.
During the time of waiting, as a family, we suffered as we had no idea what was wrong with my husband. We felt in limbo, as no one tries to help you untill these a diagnoses, then we became overwhelmed with what help we could get.
I feel early diagnosed is the key along with more knowledge & more trained GP's to spot the signs & quicker referral rimes
Families should not have to suffer a long wait to get a diagnosed
Elizabeth
"You're not David," my mother said to me. "David is my little baby and he's lying at home in his cot, waiting to be fed. But they won't let me out and he'll starve if I don't get home soon. Please help me escape, and stop my baby from starving to death."
This is obviously not a story about diagnosis, but what parent could not be bought to tears by the thought of being in the position my mother faced. She really was in Hell.
This is obviously not a story about diagnosis, but what parent could not be bought to tears by the thought of being in the position my mother faced. She really was in Hell.
Dave
My lovely clever husband was diagnosed at 65.
We had a house in Spain and private health cover so scans were carried out quickly and medication prescribed.
Took reports to GP here who carried on the prescription, memory clinic visit took a year to happen!
He gets higher AA, blue badge, council tax discount.
I have found it very hard finding out what support is available and from where.
Had Carers Needs assessment this week....referred by memory clinic.
Her main aim I felt was to tell me any and all support would need to be self funded....without knowing anything about our finances.
I asked about a Needs assessment for my husband and was told not needed as I meet all his needs.
This feels like a very lonely journey at times.
I know I'm lucky that my husband remains calm, happy and loving but the future is sca8
We had a house in Spain and private health cover so scans were carried out quickly and medication prescribed.
Took reports to GP here who carried on the prescription, memory clinic visit took a year to happen!
He gets higher AA, blue badge, council tax discount.
I have found it very hard finding out what support is available and from where.
Had Carers Needs assessment this week....referred by memory clinic.
Her main aim I felt was to tell me any and all support would need to be self funded....without knowing anything about our finances.
I asked about a Needs assessment for my husband and was told not needed as I meet all his needs.
This feels like a very lonely journey at times.
I know I'm lucky that my husband remains calm, happy and loving but the future is sca8
Lynne
My beautiful mum June, beautiful inside and out. The closest mother daughter relationship where I notice very early on that it was much more than just getting old and forgetful which seemed to be all I kept hearing from others including professionals.
The biggest challenge I faced was the battle with adult services to make my mum safe and as secure and content as she could be. Living independently with Dementia meant fear, confusion, being often lost inside her flat and outside her flat. Losing the ability to do daily tasks and just staring into nothing and wandering around.
Being offered a care home away from me where mum would have likely deteriorated further without me by her side. Whilst mum was forgetting everything and everyone, I know till the day she passed that she still knew me. I eventually won the battle to get mum near to me where she had several months of contentment and security and having the mother daughter closeness still. Whilst it seemed our roles had reversed I know I was still her little girl.
Mum is finally at peace now and I'm relieved that she is no longer suffering and frightened and confused on a daily basis.
Diagnosis early is so crucial to get all the right help.and support for our loved ones living with Dementia.
Xxx
The biggest challenge I faced was the battle with adult services to make my mum safe and as secure and content as she could be. Living independently with Dementia meant fear, confusion, being often lost inside her flat and outside her flat. Losing the ability to do daily tasks and just staring into nothing and wandering around.
Being offered a care home away from me where mum would have likely deteriorated further without me by her side. Whilst mum was forgetting everything and everyone, I know till the day she passed that she still knew me. I eventually won the battle to get mum near to me where she had several months of contentment and security and having the mother daughter closeness still. Whilst it seemed our roles had reversed I know I was still her little girl.
Mum is finally at peace now and I'm relieved that she is no longer suffering and frightened and confused on a daily basis.
Diagnosis early is so crucial to get all the right help.and support for our loved ones living with Dementia.
Xxx
Karen
My mum was diagnosed with Lewy Body dementia but not before a long period of personality change that we didn’t initially understand and then a very time getting her to the GP and an eventual diagnosis with very little help/treatment or understanding offered. Most things I had to research and find out and fight for myself along the way. I managed to keep her in her own home for as long as I could but eventually had to sell her house and place her in a care home just before covid struck which was heartbreaking and I still feel guilt about it even though she has now passed away. The stress, anxiety, exhaustion and guilt is overwhelming when you’re caring for someone with dementia and it’s a continuous period of grieving for a loved one who is still living but a stranger. It’s also very isolating.
I worry about whether I will get it too as my mum did all the “right things” - was fit, healthy, busy, social etc but GPs just brush off any concerns.
Families need more practical help, relevant useful advice and financial assistance at all stages and doctors need a lot more knowledge and understanding.
I worry about whether I will get it too as my mum did all the “right things” - was fit, healthy, busy, social etc but GPs just brush off any concerns.
Families need more practical help, relevant useful advice and financial assistance at all stages and doctors need a lot more knowledge and understanding.
Sarah
Even if you are able to obtain C.H.C. it is still not enough to pay nursing home fees. If your wife is in a home it is near on impossible to move her because the home does not want to lose the income so could lie to an alternative home when they do an assessment. The Social care management still receives good salaries but has not enough funding and do not speak to each other. NO co-ordination.
John
My wife was diagnosed with Alzheimers around 8 years ago. I first noticed a problem when we were in Madeira, thought that we was in the local area where she lived before we were married. When we came home I went to see her doctor and he immediately got her to the memory clinic where she was diagnosed with Alzheimers. From then on we were very much on our own, whith no help until the Alzheimers society stepped in and we got really good advice. I managed to care for her at home until 3 years ago when it got to much for me and I had to get her into a excellent care home where she was cared for until she passed away last year. I miss every day but I can't thank the Alzheimers society for all there understanding and help.
John
My mother was referred to the memory clinic and after a few verbal and written tests was diagnosed with vascular dementia. That was it, no support by anyone other than the family. Sadly she died of pancreatitis and at that time had a memory of approx 2 minutes. We were grateful that she did know who we were before she passed.
Linda
Share your diagnosis story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?