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.
Summer 2022 …I knew things weren’t quite right...
I am hoping that things are much better for people diagnosed with Alzheimer's now than when my father was diagnosed in the 1980s, in his early 60s, in the Scottish...
My mum had dementia and sadly passed in 2019. Prior to diagnosis I so vividly remember a telephone conversation where she told me how scared she was - she (and we at...
My husband is forgetting more each day and feels frustrated with himself.
Now unable to drive and feels he has lost all of his independence..
Will not move far from...
My mother had Alzhiemers and she was put in a care home, she used to walk around the corridor and hum some tunes, but whenever I visited her she didn't recognise me,...
I believe diagnosis is really important because...
My Dad was diagnosed 2004 he sadly passed away in 2012. During his illness I spent 5 days a week with him and worked an evening job .I had little support ,he had...
I was diagnosed 3 years ago and that was that I’ve...
The biggest barrier to getting a diagnosis for my mum was the stigma surrounding dementia. This came from mum herself, a very proud, intelligent and feisty Derbyshire...
My husband, Roger, was diagnosed with Parkinson's...
When I first noticed my husbands change in behaviour and his obvious memory lapses an appointment was made with our GP ..Concerns were brushed aside by saying it was...
My husband has got steadily worse since just before COVID. He lost his job due to giddy spells and then through that we eventually saw him have antidepressants. He...
Summer 2022 …I knew things weren’t quite right with Sue, so asked our Family GP to see her, he agreed that she needed to be referred…this happened locally within a matter of weeks, and within the first 5 minutes the consultant said that Sue was in the first stages of Vascular Dementia…Sue had a brain haemorrhage in 1996, from which she was not expected to survive, so I was expecting something to happen…the Consultant was very kind and said we had been “lucky” that Sue had 26 years before the Dementia set in.
By February 2023, ( after 2 months in hospital for a bad fall ) Sue was completely immobile, doubly incontinent, could not really speak and needed help washing and dressing, and feeding.
We had to convert our living room to a bedsit for Sue…the equipment was ( and still is ) supplied free of charge…we have a team of Care Workers who visit twice a day every day, to wash and dress Sue…the rest of 23 hours, it is just me ( age 76 ) looking after my Sue. However, there are several people and Dementia contacts I can contact almost straight away if needed.
An early diagnosis is important, but nothing can prepare you for what is going to come…my Sue is very uncooperative, virtually impossible to hold a conversation with, will rarely feed herself, does not interact with our very few visitors…people seem frightened to make contact with you once they know Dementia is present.
The biggest problem I found was Dental treatment, it took me over 3 months to get Sue treated for 2 extractions, I had to go private at a cost of over £2500. I am paying this over 12 months as most of our savings have gone on paying for the Care workers visits.
By February 2023, ( after 2 months in hospital for a bad fall ) Sue was completely immobile, doubly incontinent, could not really speak and needed help washing and dressing, and feeding.
We had to convert our living room to a bedsit for Sue…the equipment was ( and still is ) supplied free of charge…we have a team of Care Workers who visit twice a day every day, to wash and dress Sue…the rest of 23 hours, it is just me ( age 76 ) looking after my Sue. However, there are several people and Dementia contacts I can contact almost straight away if needed.
An early diagnosis is important, but nothing can prepare you for what is going to come…my Sue is very uncooperative, virtually impossible to hold a conversation with, will rarely feed herself, does not interact with our very few visitors…people seem frightened to make contact with you once they know Dementia is present.
The biggest problem I found was Dental treatment, it took me over 3 months to get Sue treated for 2 extractions, I had to go private at a cost of over £2500. I am paying this over 12 months as most of our savings have gone on paying for the Care workers visits.
Robert
I am hoping that things are much better for people diagnosed with Alzheimer's now than when my father was diagnosed in the 1980s, in his early 60s, in the Scottish Borders Region. We, as a family, were ill-prepared for how to handle the changes in him or how to get help (including financial help). My mother put up with a lot of verbal abuse from my previously gentle, kind and loving father. It was awful to watch the person we loved pretty much disappear. It was complicated by the fact that my dad had physical medical needs and so, once mum could no longer cope, a 'home' wouldn't take him and he ended his days in a mental hospital, which was distressing for him (he was still having lucid moments) and for the family. He died in 1995, aged 74.
Isabel
My mum had dementia and sadly passed in 2019. Prior to diagnosis I so vividly remember a telephone conversation where she told me how scared she was - she (and we at the time) didn’t understand what was happening to her. She told of how she cried after doctors appointments because nothing made sense. Hearing your mother feel frightened and alone is something you would not wish upon your worst enemy. The memory still haunts me to this day.
Jen
My husband is forgetting more each day and feels frustrated with himself.
Now unable to drive and feels he has lost all of his independence..
Will not move far from the house or the area he knows...His thinking process has gone out of the window and I have to guide him throughout...I try to be patient with him but at time feel frustrated myself...
Lost all reality causing us to have arguments at times and will walk off when we are at the shops forgetting where I am...
Now unable to drive and feels he has lost all of his independence..
Will not move far from the house or the area he knows...His thinking process has gone out of the window and I have to guide him throughout...I try to be patient with him but at time feel frustrated myself...
Lost all reality causing us to have arguments at times and will walk off when we are at the shops forgetting where I am...
Yvonne
My mother had Alzhiemers and she was put in a care home, she used to walk around the corridor and hum some tunes, but whenever I visited her she didn't recognise me, but when she sat down in the conservatory the staff would take her dinner into her, but as soon as the staff member was out of the room my mother had forgotten about the food. I noticed that she began to look very frail, I have no pictures of my mother anymore, I was very sad to see her declining
Barry
I believe diagnosis is really important because 900,000 is an underestimation of the real problem. There is so much stigma about alzheimers and dementia that people don’t want to get diagnosed. The effects of the disease are catastrophic for all including the economy. There is prejudice too. I have met very educated people who think it only affects those who aren’t intellectual. The educated sometimes need to be educated too. My poor mother described it as not knowing who you are anymore.
Paula
My Dad was diagnosed 2004 he sadly passed away in 2012. During his illness I spent 5 days a week with him and worked an evening job .I had little support ,he had carers who came twice a day for such a short time it wasn't worth them coming ,they make him a drink and put him to bed at 6 o'clock in the evening ( which no-one wants to do) I felt so alone and During this time I had to deal with breast cancer.To see my dad sitting looking at the floor day after day was heartbreaking ( he was a very intectual person ).
I would like to see more research into the disease, early diagnosis and more support for patients and carers.
I would like to see more research into the disease, early diagnosis and more support for patients and carers.
Angela
I was diagnosed 3 years ago and that was that I’ve had to deal with it on my own and I’ve had to give up driving
Suzanne
The biggest barrier to getting a diagnosis for my mum was the stigma surrounding dementia. This came from mum herself, a very proud, intelligent and feisty Derbyshire lass. She was in complete denial and was well into her dementia journey before we managed to get her tested. By that time she didn’t understand her diagnosis. At the time (about 8 years ago) dementia was something to be ashamed of and only in recent years has it been more widely accepted and treated with compassion. Early diagnosis is so helpful in terms of the new drug therapies and ensuring that the patient is treated with the respect and dignity they deserve. Our family were mums biggest advocates and made sure she was always safe, cared for and had as much of a normal life as we could give her. Others are not so lucky and if you have no family and no money then it’s a sad fact that you’re on your own. I would like the people who are so vulnerable and have no support to be diagnosed so that they can access help. Great strides have been made and so many people are now aware of this disease and can see there is life after diagnosis. It is often a very long road and there is still plenty of life to be lived. The stigma needs to be eradicated so more people come forward for diagnosis and earlier help can be given.
Yvonne
My husband, Roger, was diagnosed with Parkinson's dementia in 2018.
It took almost 2 years to get a diagnosis. Although his diagnosis was devastating, actually putting a name to his condition seemed somehow to make acceptance easier.
He died last year and lived those last 5 years at home with me as his carer.
Diagnosis needs to be easier to obtain, so that the awful 'not knowing' is removed.
It took almost 2 years to get a diagnosis. Although his diagnosis was devastating, actually putting a name to his condition seemed somehow to make acceptance easier.
He died last year and lived those last 5 years at home with me as his carer.
Diagnosis needs to be easier to obtain, so that the awful 'not knowing' is removed.
Janet
When I first noticed my husbands change in behaviour and his obvious memory lapses an appointment was made with our GP ..Concerns were brushed aside by saying it was old age 69/70...Months went by and I made another appointment and stated my concerns this time an appointment for a brain scan was offered and it was found that he had Alzheimer/Dementia at age 72...He is on a tablet Donepezil 10mg..He is now 84..Its been a hard journey along to this point in time.. I am 82yrs..
Maureen
My husband has got steadily worse since just before COVID. He lost his job due to giddy spells and then through that we eventually saw him have antidepressants. He appeared ok with simple memory tests so it was put down to anxiety loosing his job etc He was just 60 but since he has forgotten how to navigate Exeter where he was a good bus driver and he is constantly asking me questions as he forgets things instantly. I can loose him in town he looses our car . He can still drive perfectly well but I have to tell him directions all of the time. I have had to try a research centre to get answers as the GP just changed antidepressants! He has had 3 MRIs and finally someone said he had a stroke a few years ago. He hasn't a clue what month it is .He can't remember when our daughter is away. I am desperate to try and get more information as he isn't right!! It affects the whole family and is getting me down. We almost lost our house as his income was important and he had to give up temping as he kept getting lost and was too slow in his movements. People need more thorough assessments and answers for their families to plan the future. I miss my husband to talk to.
Bronwynn
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?