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.
My mother had dementia, and it was very sad to see her change , and forget her children's names at times,
Hello, my name is Julie and I was diagnosed with Alzheimer’s disease last year. I am currently in the Mild Cognitive stage.
It was my wife, Jane, who noticed...
My beautiful mum was diagnosed with dementia...
I am trying to find out what stage of my dementia is at. An what to expect 🤔 to be honest I think I have got the beginning of my dementia but I'm just forgetting...
My lovely, clever husband was diagnosed with...
My husband was diagnosed with Parkinson’s in 2008....
Took quite a long time to get a diagnosis. At least having a diagnosis meant some financial help, 25% off council tax and level 1 attendance allowance although as...
I was diagnosed a month or so ago. Personally I do not feel I have a problem. I am being careful. It would help if someone could identify why/when I will start to have...
I loved my mum enormously. I still do, although she...
My story is about my mum she's since passed away with Alzeheimers. I felt the doctors at my mums practice were not interested in Dementia. I wanted information about...
My mother was diagnosed with dementia in 2015, the...
I am confirmed Alzheimer’s and dementia 2 months ago
2 years ago I noticed I was not finishing a conversation with a particular detail. I saw my GP he sent me to...
My mother had dementia, and it was very sad to see her change , and forget her children's names at times,
Shirley
Hello, my name is Julie and I was diagnosed with Alzheimer’s disease last year. I am currently in the Mild Cognitive stage.
It was my wife, Jane, who noticed changes in my cognition. I was having trouble tracking dates and time. Long story short, I found a neurologist: tested for the disease and was diagnosed. I am a homozygous carrier of the E4 gene. Two alleles, yikes!
From diagnosis forward, I’ve spent many hours researching the disease online. The information is voluminous - encyclopedic, which is so helpful! I found a site for homozygous E4 carriers, it’s easy to join and full of information. There are personal stories, events, science & research, treatments..etc. For anyone interested go to: ApoE4.Info to sign up.
In an effort to keep my brain in good shape I’ve upped my exercise. Swimming 100 laps per week & walking a lot . Anything I can do to slow the disease is my primary goal. Most days I feel okay. But fear takes hold too. At odd moments, I feel sad about my fate. So be it, all I have to do is get moving and I’m better.
I’m an Alzheimer’s news junky. Online a lot, researching everything I can re treatment. There’s a wealth of information. Online seminars too, from various universities around the world. I seek hope for a cure. Leqembi is the most talked about drug treatment these days. However, being an homozygous E4 carrier puts me at high risk for a brain bleed. I’ve been investigating a new potential treatment: NK cell therapy. Time will tell.
Lastly, I wish I knew someone locally who has this disease too. A fellow traveller to share info, ask questions, and share time.
My best to all! Julie
It was my wife, Jane, who noticed changes in my cognition. I was having trouble tracking dates and time. Long story short, I found a neurologist: tested for the disease and was diagnosed. I am a homozygous carrier of the E4 gene. Two alleles, yikes!
From diagnosis forward, I’ve spent many hours researching the disease online. The information is voluminous - encyclopedic, which is so helpful! I found a site for homozygous E4 carriers, it’s easy to join and full of information. There are personal stories, events, science & research, treatments..etc. For anyone interested go to: ApoE4.Info to sign up.
In an effort to keep my brain in good shape I’ve upped my exercise. Swimming 100 laps per week & walking a lot . Anything I can do to slow the disease is my primary goal. Most days I feel okay. But fear takes hold too. At odd moments, I feel sad about my fate. So be it, all I have to do is get moving and I’m better.
I’m an Alzheimer’s news junky. Online a lot, researching everything I can re treatment. There’s a wealth of information. Online seminars too, from various universities around the world. I seek hope for a cure. Leqembi is the most talked about drug treatment these days. However, being an homozygous E4 carrier puts me at high risk for a brain bleed. I’ve been investigating a new potential treatment: NK cell therapy. Time will tell.
Lastly, I wish I knew someone locally who has this disease too. A fellow traveller to share info, ask questions, and share time.
My best to all! Julie
Julie
My beautiful mum was diagnosed with dementia alzheimers mixed dementia this year in january 2024. After i had noticed suttle changes in mums behaviour were mum was misplacing things not remembering conversations and mood swings. I talked to my mum and said i had noticed changes and i think it would be a good idea to make an appointment to see her GP. I explained to mum that sometimes things can happen on the inside that we cannot see on the outside. At the GP,s mums score was very low on the test the GP did. Mum was referred to Britton house memory clinic. Six monthes later my mum was diagnosed. Ever scince then mum has been in compleat and utter deniel. Which is heart breaking to see the person i love so dearly deteriorate. Thanks to the alzheimers society. I myself have learnt a lot on how to help mum. Also a loverly team of people from Maidstone have helped me by being just a phone call away to support me and give me strength to help me to help my mum through this heartbreaking journey. Marilyn.
marilyn
I am trying to find out what stage of my dementia is at. An what to expect 🤔 to be honest I think I have got the beginning of my dementia but I'm just forgetting the names of things. But I no wat they are. Takes me just a few minutes to remember.?
Jennifer Ann
My lovely, clever husband was diagnosed with Alzheimer’s about 12 years ago after I noticed his usual sharp memory was changing. As he wasn’t aware it was hard to convince him and his GP there was an issue. After persisting , tests and a scan finally confirmed the condition although the Consultant at the memory clinic initially felt it was depression. Little information or support was forthcoming so exploring and entering a research programme proved most valuable and supportive going forward. The opportunity to have the right PET scans and tests and information was what sustained us in the early years and it felt more optimistic.
It has been and still is a long journey with much energy needed as a carer to maintain a quality of life and find a new normal with the uncertainty of the future.
It has been and still is a long journey with much energy needed as a carer to maintain a quality of life and find a new normal with the uncertainty of the future.
Anne
My husband was diagnosed with Parkinson’s in 2008. Followed in 2018 with Alzheimer’s and Parkinson’s dementia with psychosis. In 2019 caring for him at home was no longer an option as he became violent which was totally out of character and I was no longer safe.
He went into a nursing home but from his violence he ended up being admitted to a psychiatric hospital for 5 months before returning to nursing home.
I have watched him disappear and die a bit more everyday until he died in March of Alzheimer’s.
Without the nursing home our lives would have been impossible their lives and support for both of us and our family was invaluable and made the lady 5 years bearable for us all.
He went into a nursing home but from his violence he ended up being admitted to a psychiatric hospital for 5 months before returning to nursing home.
I have watched him disappear and die a bit more everyday until he died in March of Alzheimer’s.
Without the nursing home our lives would have been impossible their lives and support for both of us and our family was invaluable and made the lady 5 years bearable for us all.
Carol
Took quite a long time to get a diagnosis. At least having a diagnosis meant some financial help, 25% off council tax and level 1 attendance allowance although as everyone is different without help from citizens advice I don’t think we would have qualified. My husband is not typical, he still drives, goes places locally without me, hair cuts etc but can’t get dressed in the right order and can’t remember where things are, emptying dishwasher, making tea etc. He also used to do all the shopping and most of the cooking.
It almost seems one a “hidden” complaint as currently my husband shows no physical signs of anything being wrong, he’s still very sociable and has retained his sense of humour. The main impact is on day to day living and on myself as the carer.
It almost seems one a “hidden” complaint as currently my husband shows no physical signs of anything being wrong, he’s still very sociable and has retained his sense of humour. The main impact is on day to day living and on myself as the carer.
Jan
I was diagnosed a month or so ago. Personally I do not feel I have a problem. I am being careful. It would help if someone could identify why/when I will start to have issues? I am doing as many things as possible e.g. playing golf, long walks and anything else to keep me going. I dance on a regular basis and seem to be all right. No one has come to me asking if I am ok. What are the issues I need to be aware of?
Colin
I loved my mum enormously. I still do, although she has now passed away.
I started to notice signs of mum’s dementia quite a while before the GP agreed with me. Mum was very intelligent, and was good at masking her failing memory and inability to complete everyday tasks and activities. The greatest difficulty in getting a diagnosis was mum’s inability / reluctance to recognise or admit that there was anything wrong. This continued throughout her Alzheimer’s journey. I had to find alternative language to encourage her to accept the need to seek help. I certainly couldn’t ever take her to a ‘dementia cafe’. She didn’t really want to mix with groups of people as she found it too confusing, and she wouldn’t allow anyone but me to care for her. However, she experienced bouts of paranoia, which were very stressful for both of us - particularly prior to her diagnosis, as I felt that onlookers might misunderstand what was happening. A diagnosis was key, as I knew that there may come a time when I would need to enlist additional support, and mum needed others to be aware of her circumstances and adjust their behaviour in order to be more empathetic.
When the diagnosis process eventually took place, it was very challenging and stressful, as it involved travelling to hospitals, and a brain scan, which caused a lot of fear and anger in my otherwise lovely mum. I feel it’s important to recognise that some people who experience dementia may not ever recognise or accept it, and that we need to find a way of talking to them which won’t induce fear or frustration. Carers also need more support in relation to finding the least disruptive way of seeking a diagnosis, and we need to acknowledge the physical and emotional toll that caring for a loved one with dementia can have. In my case, it triggered a severe physical reaction that resulted in permanent physical disability. People with dementia need to be supported within their individual familial context, and individual personalities should always be taken into account.
I started to notice signs of mum’s dementia quite a while before the GP agreed with me. Mum was very intelligent, and was good at masking her failing memory and inability to complete everyday tasks and activities. The greatest difficulty in getting a diagnosis was mum’s inability / reluctance to recognise or admit that there was anything wrong. This continued throughout her Alzheimer’s journey. I had to find alternative language to encourage her to accept the need to seek help. I certainly couldn’t ever take her to a ‘dementia cafe’. She didn’t really want to mix with groups of people as she found it too confusing, and she wouldn’t allow anyone but me to care for her. However, she experienced bouts of paranoia, which were very stressful for both of us - particularly prior to her diagnosis, as I felt that onlookers might misunderstand what was happening. A diagnosis was key, as I knew that there may come a time when I would need to enlist additional support, and mum needed others to be aware of her circumstances and adjust their behaviour in order to be more empathetic.
When the diagnosis process eventually took place, it was very challenging and stressful, as it involved travelling to hospitals, and a brain scan, which caused a lot of fear and anger in my otherwise lovely mum. I feel it’s important to recognise that some people who experience dementia may not ever recognise or accept it, and that we need to find a way of talking to them which won’t induce fear or frustration. Carers also need more support in relation to finding the least disruptive way of seeking a diagnosis, and we need to acknowledge the physical and emotional toll that caring for a loved one with dementia can have. In my case, it triggered a severe physical reaction that resulted in permanent physical disability. People with dementia need to be supported within their individual familial context, and individual personalities should always be taken into account.
Louise
My story is about my mum she's since passed away with Alzeheimers. I felt the doctors at my mums practice were not interested in Dementia. I wanted information about why mum was asleep all the time. Was she going into another stage of Dementia. She also kept passing out and had TIAs. The doctor said mum may have Diabetes! She had blood tests nothing mum hadnt got Diabetes. It took a a carer from a day centre mum went to to say mum was in final stages. Also she had vascular Dementia as well. I decided then to become a Dementia Carer I took my Social Care qualification and level 2 and 3 in Dementia care. My gp said I know more about my mums Dementia than him, I felt let down and angry with a doctor saying this. Mum as since passed away she went into a care home for the last 4 years but I did some of her care in the home. I went to feed her everyday. Wash her hair each week. I just think Dr's need to be more understanding and more qualified in this area. More funding definately as well.
Jennifer Jones
My mother was diagnosed with dementia in 2015, the pathway to diagnosis was quite smooth, GP to memory clinic, consultant assessment at home, MRI scan which diagnosed the Dementia and then medication after which my mum attended a day centre called Bright Shadow for dementia doing music and crafts
Funding is needed for The community based groups whether craft or music to help with stimulation and slowing down the process and providing some fun and enjoyment for those living with Dementia is essential as there are some dark and stressful days sometimes
However, my father’s experience was poor, although he had signs of dementia he was never diagnosed. Admitted to hospital a couple of times with promises of being referred and although chased this it never happened this was during the pandemic . Both patents have since died ❤️
The impact on knowing your loved ones have dementia is devastating. Seeing them lose their independence becoming frail, unable to do the things they enjoy is heartbreaking . Both my parents were pillars of the community and had their own business and were very well liked , helping people all the time. They are very much loved and missed by their family ❤️
Funding is needed for The community based groups whether craft or music to help with stimulation and slowing down the process and providing some fun and enjoyment for those living with Dementia is essential as there are some dark and stressful days sometimes
However, my father’s experience was poor, although he had signs of dementia he was never diagnosed. Admitted to hospital a couple of times with promises of being referred and although chased this it never happened this was during the pandemic . Both patents have since died ❤️
The impact on knowing your loved ones have dementia is devastating. Seeing them lose their independence becoming frail, unable to do the things they enjoy is heartbreaking . Both my parents were pillars of the community and had their own business and were very well liked , helping people all the time. They are very much loved and missed by their family ❤️
Josephine white
I am confirmed Alzheimer’s and dementia 2 months ago
2 years ago I noticed I was not finishing a conversation with a particular detail. I saw my GP he sent me to Memory clinic. I went through a list of questions to test memory.
I came out 94 per cent ok.
New appointment 12 months later for same questions and after a head MRI scan. It was found I had one dead Lobe in the centre of my head. This resulted in a consultant visiting me at home.
Then shortly afterwards confirmed with the above. I now have list of activities, and lunch/ cafe dates to fill my time.
Alzheimer’s society have been excellent with help. I am now in my 8th week from confirmation. So early stages, I’m finding myself online looking for food that has a positive effect on my brain and not.
My wife is also keeping an eye on me.
I have to say that it’s a type of disease that creeps up on you so it takes a while before yourself realise or partner can see very small changes. This is where the time from the beginning of symptoms to being obvious before one gets a GP assessment
and then scan and memory clinic. Once that is done things tend to move at a speed according to NHS availability.
2 years ago I noticed I was not finishing a conversation with a particular detail. I saw my GP he sent me to Memory clinic. I went through a list of questions to test memory.
I came out 94 per cent ok.
New appointment 12 months later for same questions and after a head MRI scan. It was found I had one dead Lobe in the centre of my head. This resulted in a consultant visiting me at home.
Then shortly afterwards confirmed with the above. I now have list of activities, and lunch/ cafe dates to fill my time.
Alzheimer’s society have been excellent with help. I am now in my 8th week from confirmation. So early stages, I’m finding myself online looking for food that has a positive effect on my brain and not.
My wife is also keeping an eye on me.
I have to say that it’s a type of disease that creeps up on you so it takes a while before yourself realise or partner can see very small changes. This is where the time from the beginning of symptoms to being obvious before one gets a GP assessment
and then scan and memory clinic. Once that is done things tend to move at a speed according to NHS availability.
Stephen
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?