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.
My story with dementia is unusual and not the worst....
My Story Phil,
My wife Sharon was diagnosed with...
I’m not sure you would want to hear my experience with my beautiful father in law who had dementia very severe , mine is about the care home we took too , and it’s...
My wife has alzheimers and parkinsonism 9 years now totally disabled incontinent needs feeding and all personal care I'm her carer with help from 4 paid carers...
Vascular Dementia took my mum's independence, her...
Watching someone you love slowly changing, losing...
My mam had vascular dementia for 12 years and has...
Hazel and I married in 1958. After being looked...
My dear husband has dementia and has it for 10 years...
During summer, every morning, the sun filtered through the blinds, casting striped shadows across the bedroom wall. I would open my eyes, feeling the familiar weight...
After two years of worrying about a change in my...
My lovely husband (we have been married for 59 years) was diagnosed with Alzheimers in 2011 but showed signs of it in 2009. He was a marathon runner, had never smoked...
My story with dementia is unusual and not the worst. My wife died 4 weeks ago, so it’s all a bit raw.
Susan was a vivacious woman who helped everyone she met, mostly through education. She assisted the researchers at UCL in every way she could and was an enthusiastic supporter of Time for Dementia, a programme matching families with student doctors. Finally she has donated her brain to the Brain Bank, for research.
She was diagnosed with PCA, a rare dementia affecting fewer than 5% of people with dementia. It made her blind and she had difficulty negotiating spaces. But we had a good life together and I managed to care for her, with help, at home, where she died reasonably comfortably, on September 19th.
Susan was a vivacious woman who helped everyone she met, mostly through education. She assisted the researchers at UCL in every way she could and was an enthusiastic supporter of Time for Dementia, a programme matching families with student doctors. Finally she has donated her brain to the Brain Bank, for research.
She was diagnosed with PCA, a rare dementia affecting fewer than 5% of people with dementia. It made her blind and she had difficulty negotiating spaces. But we had a good life together and I managed to care for her, with help, at home, where she died reasonably comfortably, on September 19th.
Chris
My Story Phil,
My wife Sharon was diagnosed with Alzheimers April 2018 she passed with end of life dementia July 2021 one day before our 46th wedding anniversary
Alzheimer’s effects not just the person that is diagnosed with it, the whole family are effected. A son whom finds it so hard to see his mother suffering that he can’t face going to see her in the care home. A daughter whom loved to share her family moments with her mother, that changed to looking after her mother, sometimes having to ignore the scalding comments knowing that her mother would never say such things. Grandchildren who can’t understand why nanny doesn’t speak or hug them anymore, sometimes not knowing them. Then there’s me the husband of 46 years whom watches his soulmate slip away into the darkened world of Alzheimer’s, a wife who no longer knows him and asks him to get out of her house, who sometimes gives him a slap, but then when walking back into the room, she’s happy to see him and asks for a loving hug. Myself, family and friends walked up Mount Snowdon in aid of Alzheimer’s research on the 9th October 2021, we raised £2615, funds they badly need in the hope that a cure can be found. We pray that family’s no longer lose their loved ones to this debilitating disease.
My Story Phil,
My wife Sharon was diagnosed with Alzheimers April 2018 she passed with end of life dementia July 2021 one day before our 46th wedding anniversary
Alzheimer’s effects not just the person that is diagnosed with it, the whole family are effected. A son whom finds it so hard to see his mother suffering that he can’t face going to see her in the care home. A daughter whom loved to share her family moments with her mother, that changed to looking after her mother, sometimes having to ignore the scalding comments knowing that her mother would never say such things. Grandchildren who can’t understand why nanny doesn’t speak or hug them anymore, sometimes not knowing them. Then there’s me the husband of 46 years whom watches his soulmate slip away into the darkened world of Alzheimer’s, a wife who no longer knows him and asks him to get out of her house, who sometimes gives him a slap, but then when walking back into the room, she’s happy to see him and asks for a loving hug. Myself, family and friends walked up Mount Snowdon in aid of Alzheimer’s research on the 9th October 2021, we raised £2615, funds they badly need in the hope that a cure can be found. We pray that family’s no longer lose their loved ones to this debilitating disease.
👉🏻💜👈🏻
My wife Sharon was diagnosed with Alzheimers April 2018 she passed with end of life dementia July 2021 one day before our 46th wedding anniversary
Alzheimer’s effects not just the person that is diagnosed with it, the whole family are effected. A son whom finds it so hard to see his mother suffering that he can’t face going to see her in the care home. A daughter whom loved to share her family moments with her mother, that changed to looking after her mother, sometimes having to ignore the scalding comments knowing that her mother would never say such things. Grandchildren who can’t understand why nanny doesn’t speak or hug them anymore, sometimes not knowing them. Then there’s me the husband of 46 years whom watches his soulmate slip away into the darkened world of Alzheimer’s, a wife who no longer knows him and asks him to get out of her house, who sometimes gives him a slap, but then when walking back into the room, she’s happy to see him and asks for a loving hug. Myself, family and friends walked up Mount Snowdon in aid of Alzheimer’s research on the 9th October 2021, we raised £2615, funds they badly need in the hope that a cure can be found. We pray that family’s no longer lose their loved ones to this debilitating disease.
My Story Phil,
My wife Sharon was diagnosed with Alzheimers April 2018 she passed with end of life dementia July 2021 one day before our 46th wedding anniversary
Alzheimer’s effects not just the person that is diagnosed with it, the whole family are effected. A son whom finds it so hard to see his mother suffering that he can’t face going to see her in the care home. A daughter whom loved to share her family moments with her mother, that changed to looking after her mother, sometimes having to ignore the scalding comments knowing that her mother would never say such things. Grandchildren who can’t understand why nanny doesn’t speak or hug them anymore, sometimes not knowing them. Then there’s me the husband of 46 years whom watches his soulmate slip away into the darkened world of Alzheimer’s, a wife who no longer knows him and asks him to get out of her house, who sometimes gives him a slap, but then when walking back into the room, she’s happy to see him and asks for a loving hug. Myself, family and friends walked up Mount Snowdon in aid of Alzheimer’s research on the 9th October 2021, we raised £2615, funds they badly need in the hope that a cure can be found. We pray that family’s no longer lose their loved ones to this debilitating disease.
👉🏻💜👈🏻
Philip
I’m not sure you would want to hear my experience with my beautiful father in law who had dementia very severe , mine is about the care home we took too , and it’s these the government needs to regulate, I will live with this for the rest of my life.
Thank you Michelle.
Thank you Michelle.
Michelle
My wife has alzheimers and parkinsonism 9 years now totally disabled incontinent needs feeding and all personal care I'm her carer with help from 4 paid carers privately no holidays for us
John
Vascular Dementia took my mum's independence, her memories of my Dad that had passed and me her youngest child and Grandchildren, as a strong London lady born into the 2nd world war, she turned into a frightened shell of herself!
Liza
Watching someone you love slowly changing, losing cognition, seeing frightening images.
Then a day of almost normality, enjoying walking, eating.
Then complete confusion. "Who are you?" "I hate you".
Pills to ameliorate the confusion. Little effect.
Singing loudly, but unable to walk safely.
Then taken into hospital "for analysis". Left on her own overnight, leading to terror and rapid deterioration.
Transfer to Care Home. Gradual improvement from terror. but slow loss of any understanding.
Then a day of peace and chattiness. Only to be back to somnolence next day.
So it goes on for 7 years, sometimes with various infections.
Then the final loss.
(I would point out this is from 10 years ago. I hope things heve improved.)
Then a day of almost normality, enjoying walking, eating.
Then complete confusion. "Who are you?" "I hate you".
Pills to ameliorate the confusion. Little effect.
Singing loudly, but unable to walk safely.
Then taken into hospital "for analysis". Left on her own overnight, leading to terror and rapid deterioration.
Transfer to Care Home. Gradual improvement from terror. but slow loss of any understanding.
Then a day of peace and chattiness. Only to be back to somnolence next day.
So it goes on for 7 years, sometimes with various infections.
Then the final loss.
(I would point out this is from 10 years ago. I hope things heve improved.)
alec
My mam had vascular dementia for 12 years and has recently passed away. She was diagnosed when she was 62 years young and I became her care at 28! We navigated the symptoms, progression, and hospital appointments with easy. She taught us to embrace every day and made memories as we went. But now with the grief and looking back, 12 years took it’s toll in many ways. What I would like to say to others is you are not fine and that is ok because there is a community here to help don’t do it alone 💙
Helen
Hazel and I married in 1958. After being looked after by Hazel (until she could no longer cope - also with three children under five) my wiidowed mother died with dementia in an NHS geriatric home in 1968. Hazel was diagnosed with Alzheimer’s in 2018. When my daughter and I could no longer cope, and the NHS would not, Hazel was left to social care. Despite our heartfelt intentions and promises, we had to put her into a private home in 2021. Hazel is now 88, I am 90 and deeply in grief. Alzheimer’s is a very cruel illness. It seems to me that if there is - or was ever - a god, it must now be mad or malevolent or dead.
John
My dear husband has dementia and has it for 10 years ,sadly now his is in care home and has been for 2months .This has been really hard on my 2children&grandchildren and of course myself .I have managed him at home till then It was my wish to do so always but with incontence at night and getting up 2or 3times a night to change him and bedding it became far too much for me .
He is a very quite man and not at all annnoying ,so sad it had to end this way .Visiting is so hard as he thinks he can come home most times .I just come home upset and guilty leaving him.He really doesn,t talk much these day and memory very short so hard to have a conversation with him .Life now very lonely without him but nothing else can be done .Very well looked after but not the same .He doesn,t really look much differant but people just seem to stay away I guess they cannot deal with it
Very sad for him and us but understandable .These poor souls need all the care and help they can get ,a very sad way to end your life yourself and family
He is a very quite man and not at all annnoying ,so sad it had to end this way .Visiting is so hard as he thinks he can come home most times .I just come home upset and guilty leaving him.He really doesn,t talk much these day and memory very short so hard to have a conversation with him .Life now very lonely without him but nothing else can be done .Very well looked after but not the same .He doesn,t really look much differant but people just seem to stay away I guess they cannot deal with it
Very sad for him and us but understandable .These poor souls need all the care and help they can get ,a very sad way to end your life yourself and family
Janet
During summer, every morning, the sun filtered through the blinds, casting striped shadows across the bedroom wall. I would open my eyes, feeling the familiar weight of anxiety pressing down on my chest. It was a bright day outside, yet the sunshine felt distant in my heart. That day was no different; I was at war with my mind, and that day my fears loomed larger than ever.
I have never been one to easily forget things. As a child, I was the keeper of family birthdays and anniversaries, dutifully sending cards to ensure no one felt overlooked. But ever since my mother had been diagnosed with dementia, I couldn’t shake the feeling that the shadows of that illness were creeping closer, inching into my life.
It started innocently enough—a name slipped my mind at the pub with some friends and an eerie shiver of realisation ran down my spine. The next week, I found myself staring blankly at an empty shelf in the kitchen, wondering what I had gone in there to find. Anxiety began to twist itself into my routines, each forgotten detail strengthening its grip.
“Am I developing dementia?” I mumbled to myself in the mirror, while brushing my teeth. Each time I neglected to recall something, the voice grew louder. It echoed in my thoughts as I stood in line at the supermarket, trying to remember where I had parked the car, or what I needed to buy.
“Do I have bread and milk?” My brows knitted together in concentration, and then I steeled myself, committing to certainty while inside I felt like a house of cards slowly collapsing.
I struggled with the scale in a way that was becoming familiar. Every morning, I weigh myself and sigh at the numbers—the weight is stubborn, much like my worries. I often fantasise about losing weight, and feeling lighter in body and mind. Perhaps, if I am healthier, these memory lapses would dissipate. Maybe I will outpace that familial darkness that looms large with every birthday. But each step on the treadmill feels heavy, and the stubbornness of my body made me question if it was my brain that was failing me or just the physical reflection of my internal struggles.
Days turned to weeks, and I decided to take action—a walk around the neighbourhood, a small act of defiance against my ghosts. I took a deep breath before stepping out the front door, determined to feel the sun’s warmth on my skin instead of the chill of fear. But the minutes felt like hours, and as I slowly walked with the aid of a stick, I became more aware of my surroundings—the flowers blooming, the children laughing, the sounds of life bustling around me. Yet, even as I took each step, I scolded myself: “What if I forget the way back? What if…” And that fear tightened around my throat like the hands of the devil.
Halfway through my stroll, I met Ken, an old neighbour I had known for years—a warm man who never failed to brighten his day. As we chatted my heart raced; my mind racing, searching for a way to anchor myself in the moment. Memories flooded back—a shared cup of coffee, late-night chats, and laughter that spilt like warm honey over the years.
“Hey, Robert, you’ve been on my mind,” Ken said, his smile radiant with kindness.
I could feel a warmth growing within —this connection, this recognition, was a beacon against my lurking fears. We spoke for a while longer, sharing stories from the past; it was comforting to realise that some memories were so strong, they resisted being swept away by the tides of forgetfulness.
“Do you ever worry about forgetting?” I blurted out, the question hanging between them, raw and vulnerable.
Ken chuckled lightly, a knowing smile in his eyes. “Oh, mate, we all forget things. It’s just how life works! What matters is keeping the ones you love close and sharing laughter—those are the memories worth holding.”
As we parted, with a warm and lingering handshake, I felt the anxiety ease just a fraction. Perhaps forgetting wasn’t such a monster after all, but a humbling part of being alive. And as I continued to walk, feeling lighter with each step, I resolved to seek joy instead of dread.
That evening, standing in front of the mirror, I took a deep breath, armour against worry. “If I forget, I want to forget the things that weigh on me. I’ll remember the laughter, the sunshine, the connections.” And in embracing that, I found hope—a fragile but potent flicker that reminded me I was more than my fears.
In the days that followed, I began to shift my narrative. Whenever I would forget a name or lose my train of thought, I would take a moment to appreciate what I did remember, to cherish those slices of life that helped shape me. I started walking more, connecting with people, and nurturing memories worth holding onto.
Maybe I wouldn't conquer the fear of fading away, but I could certainly refuse to let it define me. And somehow, I found that remembering joy was the best antidote against the shadows that lurked around my mind.
I have never been one to easily forget things. As a child, I was the keeper of family birthdays and anniversaries, dutifully sending cards to ensure no one felt overlooked. But ever since my mother had been diagnosed with dementia, I couldn’t shake the feeling that the shadows of that illness were creeping closer, inching into my life.
It started innocently enough—a name slipped my mind at the pub with some friends and an eerie shiver of realisation ran down my spine. The next week, I found myself staring blankly at an empty shelf in the kitchen, wondering what I had gone in there to find. Anxiety began to twist itself into my routines, each forgotten detail strengthening its grip.
“Am I developing dementia?” I mumbled to myself in the mirror, while brushing my teeth. Each time I neglected to recall something, the voice grew louder. It echoed in my thoughts as I stood in line at the supermarket, trying to remember where I had parked the car, or what I needed to buy.
“Do I have bread and milk?” My brows knitted together in concentration, and then I steeled myself, committing to certainty while inside I felt like a house of cards slowly collapsing.
I struggled with the scale in a way that was becoming familiar. Every morning, I weigh myself and sigh at the numbers—the weight is stubborn, much like my worries. I often fantasise about losing weight, and feeling lighter in body and mind. Perhaps, if I am healthier, these memory lapses would dissipate. Maybe I will outpace that familial darkness that looms large with every birthday. But each step on the treadmill feels heavy, and the stubbornness of my body made me question if it was my brain that was failing me or just the physical reflection of my internal struggles.
Days turned to weeks, and I decided to take action—a walk around the neighbourhood, a small act of defiance against my ghosts. I took a deep breath before stepping out the front door, determined to feel the sun’s warmth on my skin instead of the chill of fear. But the minutes felt like hours, and as I slowly walked with the aid of a stick, I became more aware of my surroundings—the flowers blooming, the children laughing, the sounds of life bustling around me. Yet, even as I took each step, I scolded myself: “What if I forget the way back? What if…” And that fear tightened around my throat like the hands of the devil.
Halfway through my stroll, I met Ken, an old neighbour I had known for years—a warm man who never failed to brighten his day. As we chatted my heart raced; my mind racing, searching for a way to anchor myself in the moment. Memories flooded back—a shared cup of coffee, late-night chats, and laughter that spilt like warm honey over the years.
“Hey, Robert, you’ve been on my mind,” Ken said, his smile radiant with kindness.
I could feel a warmth growing within —this connection, this recognition, was a beacon against my lurking fears. We spoke for a while longer, sharing stories from the past; it was comforting to realise that some memories were so strong, they resisted being swept away by the tides of forgetfulness.
“Do you ever worry about forgetting?” I blurted out, the question hanging between them, raw and vulnerable.
Ken chuckled lightly, a knowing smile in his eyes. “Oh, mate, we all forget things. It’s just how life works! What matters is keeping the ones you love close and sharing laughter—those are the memories worth holding.”
As we parted, with a warm and lingering handshake, I felt the anxiety ease just a fraction. Perhaps forgetting wasn’t such a monster after all, but a humbling part of being alive. And as I continued to walk, feeling lighter with each step, I resolved to seek joy instead of dread.
That evening, standing in front of the mirror, I took a deep breath, armour against worry. “If I forget, I want to forget the things that weigh on me. I’ll remember the laughter, the sunshine, the connections.” And in embracing that, I found hope—a fragile but potent flicker that reminded me I was more than my fears.
In the days that followed, I began to shift my narrative. Whenever I would forget a name or lose my train of thought, I would take a moment to appreciate what I did remember, to cherish those slices of life that helped shape me. I started walking more, connecting with people, and nurturing memories worth holding onto.
Maybe I wouldn't conquer the fear of fading away, but I could certainly refuse to let it define me. And somehow, I found that remembering joy was the best antidote against the shadows that lurked around my mind.
robert
After two years of worrying about a change in my normally placid character, my wife insisted on a visit to our GP. The first test I did was 95% and we were told that I was OK. That was not good enough, so we requested to be place on the waiting list for further tests. After 3 months I had a Teams meeting, and eventually, we received the results that I have mixed dementia- alzheimers and Vascular. I had a serious stroke 10 years ago, that triggered the Vascular side. I keep my brain very active with puzzles, crosswords and reading. I've just finished and published my 15th novel on Amazon and Kobo. I still help to run my flying school, and keep fit in the gym and swimming. I'm determined to keep the dementia journey as far away as possible. I am on 10ml donepezil, that I find helps.
Hope this gives others hope and please keep positive, hold your head up high and fight this terrible disease.
Hope this gives others hope and please keep positive, hold your head up high and fight this terrible disease.
Chris
My lovely husband (we have been married for 59 years) was diagnosed with Alzheimers in 2011 but showed signs of it in 2009. He was a marathon runner, had never smoked or been overweight, and enjoyed excellent health until dementia struck. I was his main carer until 2018. It wasn't easy as the laid-back man I loved became agitated and almost violent. Life was frustrating for him and exhausting for me. He went into a wonderful care-home in 2018. For the past two years he has been bed-bound and for several years now he hasn't known who I am. This cruel illness has robbed us of our happy life together and I hate what it has done to him. He is a shell of his former self with no life at all. He did not deserve this.
Elizabeth
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?