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.
Mum showed signs months before lockdown repeating, forgetfulness. After lockdown things came to a head hearing voices, paranoia, delusional and ended up in hospital,...
I was too young to really understand what two uncles were suffering from and both were locked away in what was known locally as the loony bin and died there. When a...
My wife was diagnosed with Alzheimer's in 2012. I have looked after her since then. However I went into hospital in December 2023 so she had to go into a care home. ...
My grandma started forgetting to close the house door or turn off gas for cooking. She had to move to a care house for her safety. She couldn't remember my dad/her...
My mum has vascular dementia. She has had the condition for about 7 years. She is 92. Her husband , my dad, had Alzheimer’s disease, before his death 6 years ago...
My story about Dementia is viewed from the other side, so to speak, in that I am a retired Psychiatric Nurse, a General Nurse and a Community Psychiatric nurse.
I...
My mum was a very clever lady but then she started to...
Its 13 years since my husband was diagnosed with...
My dad first went to the GP worried about his memory in 2018. It took FIVE YEARS to finally get a diagnosis of vascular dementia (long waits, ineffective testing...
I suffer from vascular dementia. I was diagnosed a...
After losing my dad to glioblastoma brain tumour...
I kept my promise to Dad to look after mom his...
Mum showed signs months before lockdown repeating, forgetfulness. After lockdown things came to a head hearing voices, paranoia, delusional and ended up in hospital, diagnosed with mixed dementia. Mental health gave tablets that didn’t really help. I asked for help from SS + mental help but they pretty much did nothing. Because of my own health issues mum had to go to care home where she has been much better looked after than I could manage alone. It has taken most of her savings and I worry for when her money has gone having to ask for help. I would like to mention Hospital Staff + Doctors. Need to learn how to deal with dementia patients as in our experience there is no understanding and very little care given. Thank you
Denise
I was too young to really understand what two uncles were suffering from and both were locked away in what was known locally as the loony bin and died there. When a close friend was diagnosed more recently, he went into care and was well looked after. His wife was the one who suffered more. Slowly letting go of her first love, after more than 50 years of marriage and watching him lose all recognition of her and their children. Yet she visited every day because she never stopped loving him and who he was to her. Family needs support too, not just the one with dementia.
Aileen
My wife was diagnosed with Alzheimer's in 2012. I have looked after her since then. However I went into hospital in December 2023 so she had to go into a care home. In January 2024 I returned home and brought her too. She can do nothing for herself so we now pay for a live-in carer
Robert
My grandma started forgetting to close the house door or turn off gas for cooking. She had to move to a care house for her safety. She couldn't remember my dad/her son, but could still remember my mum/her son's wife. Then she forgot to eat/feeling hungry (refused to be fed) and passed away. So sad. Wasn't too old.
Diana
My mum has vascular dementia. She has had the condition for about 7 years. She is 92. Her husband , my dad, had Alzheimer’s disease, before his death 6 years ago .She receives a mixture of family and professional 24 hour care. For the family care, we operate a rota amongst the siblings. She has had a relatively slow. cognitive decline, despite a almost complete loss of short term memory her communication skills are still pretty good, and she can still undertake some aspects of personal care such as going to the toilet on her own. However, she needs help dressing and undressing, washing and showering. We cook for her and administer her meds. She enjoys people’s company and talking about her childhood during WW2. We love watching TV together particularly The Repair Shop, Gardener’s World & Antiques Road Trip. She used to be an avid reader, but very sadly doesn’t now have the capacity to concentrate enough to do so ( she still loves books though!) .
Looking after her is a joy and a privilege ( she’s my mum! ) ; she is very sweet and appreciative. However, it is still quite a task. On the day one to two days a week that I care for her, l still have to do a full day’s work, and am only able to do so because I have a laptop and an understanding employer .
I would like the Government and wider society to know or appreciate how many families are caring for relatives with dementia, and how it impacts on them emotionally and financially.
Looking after her is a joy and a privilege ( she’s my mum! ) ; she is very sweet and appreciative. However, it is still quite a task. On the day one to two days a week that I care for her, l still have to do a full day’s work, and am only able to do so because I have a laptop and an understanding employer .
I would like the Government and wider society to know or appreciate how many families are caring for relatives with dementia, and how it impacts on them emotionally and financially.
Tom
My story about Dementia is viewed from the other side, so to speak, in that I am a retired Psychiatric Nurse, a General Nurse and a Community Psychiatric nurse.
I published a book in 2017 on behalf of Carers called- Taking Care of People with Dementia- An -Z of Practical Help and Caregivers’ Stories. The book came about because, during my period of nursing in the community in the 1990s, I met with many persons with dementia and their family caregivers. I became shockingly aware of the impact of the condition on the person with dementia and their families and other caregivers. I realised in the ensuing years between the 1990s and the 2000s that dementia was a growing concern and that caregivers were the silent majority, lovingly bearing the brunt of the difficult domestic, financial and social situations that can arise.
Although retired, I am still involved with people with dementia, and their carers, including carers who work for agencies and family caregivers. At present, I volunteer with my local Age Concern Charity and am able to encourage and comfort people with dementia and their partners directly. I also provide remote support by phone and email and can direct carers to the many Dementia Organisations for updated advice and assistance.
I published a book in 2017 on behalf of Carers called- Taking Care of People with Dementia- An -Z of Practical Help and Caregivers’ Stories. The book came about because, during my period of nursing in the community in the 1990s, I met with many persons with dementia and their family caregivers. I became shockingly aware of the impact of the condition on the person with dementia and their families and other caregivers. I realised in the ensuing years between the 1990s and the 2000s that dementia was a growing concern and that caregivers were the silent majority, lovingly bearing the brunt of the difficult domestic, financial and social situations that can arise.
Although retired, I am still involved with people with dementia, and their carers, including carers who work for agencies and family caregivers. At present, I volunteer with my local Age Concern Charity and am able to encourage and comfort people with dementia and their partners directly. I also provide remote support by phone and email and can direct carers to the many Dementia Organisations for updated advice and assistance.
JANET
My mum was a very clever lady but then she started to lose her memory, it took a long time to get a diagnosis I wish mental health had more resources. I realised my mum was a different person now and grieved for who she used to be. I was so lucky to be referred to social prescribing which I was completely unaware of, it opened many doors and introduced me to some amazing people, services and help, I wish I had known about this earlier in our journey. I feel so grateful that I am now volunteering with dementia UK with wonderful people in diversity and inclusion. As our population ages the help required will be greater and resources required will be spread thinly so more resources in this area are needed. My Nan and my Dad also have dementia and that’s just my close family. Navigating the journey is very hard and having support is essential. Mum is now in a home being cared for and I can spend quality time with her. I’m now navigating the financial aspects.
Diana
Its 13 years since my husband was diagnosed with Dementia. In those years I have lost my husband bit by bit, day by day. Everyday a little bit more of the person you love gets stolen until they are just a shell. It’s heartbreaking, grieving everyday for them. Its also exhausting, you lose yourself too. Today, my husband goes into a Care home. Another step down, the grief will never end.
Janet
My dad first went to the GP worried about his memory in 2018. It took FIVE YEARS to finally get a diagnosis of vascular dementia (long waits, ineffective testing methods, and GP failings, being misdiagnosed as anxiety and depression). Those 5 years were horrendous - he knew something was wrong, and it was different from anxiety and depression, but that's what the doctors insisted from their limited intel. And when he finally did get a diagnosis the letter confirming his diagnosis took 4 months to come through, full of acronyms and jargon that none of us could understand. And that was it. Good bye. Nothing about what to do now. No advice about getting a Lasting Power of Attorney set up. No signposting to support or advice on how to adjust to life with dementia and being a carer (for my mum). And now his dementia is greatly progressed and I'm losing a part of him every day. Having been close to my dad my whole life - he was my primary carer when I was young - it is brutal and devastating to watch this slow and awful losing of all the beautiful things that make him him.
Emily
I suffer from vascular dementia. I was diagnosed a few years ago it is now 2024, my life is so up and down with this disease. I have some really good days and then I pay for it for 2 days. The progression of the disease can get completely fast and quick. It's really hard for someone with this disease. because people around you really don't know what it's like, they try to understand and the care they give you, if you have a loving family around you, is amazing and it is so good for your self esteem. To be honest losing myself staying is in part the hardest for me. It creates an awful lot of depression and I definitely suffer from depression and I can cry for days on end. I love my family and as much as they try to understand me there's no way that they can. Unless you're the one going through this disease it is hard for anybody to put themselves in this position. we are slowly losing our minds and trying to keep a hold of that is so difficult because the more you try to hold, on the harder it is to hold on. Even trying to tell my story is difficult because the words don't come very easy thank goodness for Google. I also lose my train of thought all the time it's hard for me to even talk to my therapist because I'm all over the place I start telling one story and then it turns into a whole nother story and I don't know what I was trying to say in the first place. There are times I don't recognize my family I really don't know who they are like I've never met them before I have lost myself in my house often I have lost myself trying to get to a bathroom in my own home. How do we deal with the fact that we know we have just wet ourselves because we're lost I can't get in a car and go down the road and make a turn where I'm not lost and that is so scary. I have sundowners which is hard because I know what is coming going towards the end of the day. For those of you who take care of people like me just try to be patient kind understanding and never say wow I forget things all the time too, we know you do but not like us when we forget things we actually forget them because that's what we are we forget all kinds of things. Having to listen to well I forget things too is demeaning to me because you don't understand when I forget things they could actually really be gone out of my mind for good or at least we're very long time. No matter what dementia we suffer from it's hard as heck people and I'm about to lose where I'm at so I'm going to stop right now thank you for letting me tell my story.
Jane
After losing my dad to glioblastoma brain tumour terminal cancer in the pandemic 30th Jan 2021,from that day I began caring for mom finally got her diagnosed in Oct 2022 by the memory clinic brain scan and GP none of that process was easy.
Mom like others totally in denial she has mixed Alzheimers & vascular dementia, she could no longer drive ,she maintains she hit her head on a tree and thats why she is poorly, I have been her care giver for 3 & 1/2 she had been married for 52 year to dad. Moms short term memory is bad her balance & the falls, incontinence has been both at times,
I use disposible incontinence pants for her, moved her bed into the room near bathroom TV wardrob & comfortable high back chair, physio got me a pressure sore cushion for her & a bed bar I had already put grab bars in the house walking frame put signs where things are.I know the loneliness that other care givers feel our lives become 2nd to our loved one,it does put strains on our marriages & social life.
A hard part is the parent does not like the role reversal that the daughter tells the parent what to do.
cook, clean, do lawns, colour her hair, gel & do compression stocking, washing her, dressing her, pay bills,sort meds, but mom says she does all those things herself. Its PRIDE & not wanting to admit her diagnosis.
Mom like others totally in denial she has mixed Alzheimers & vascular dementia, she could no longer drive ,she maintains she hit her head on a tree and thats why she is poorly, I have been her care giver for 3 & 1/2 she had been married for 52 year to dad. Moms short term memory is bad her balance & the falls, incontinence has been both at times,
I use disposible incontinence pants for her, moved her bed into the room near bathroom TV wardrob & comfortable high back chair, physio got me a pressure sore cushion for her & a bed bar I had already put grab bars in the house walking frame put signs where things are.I know the loneliness that other care givers feel our lives become 2nd to our loved one,it does put strains on our marriages & social life.
A hard part is the parent does not like the role reversal that the daughter tells the parent what to do.
cook, clean, do lawns, colour her hair, gel & do compression stocking, washing her, dressing her, pay bills,sort meds, but mom says she does all those things herself. Its PRIDE & not wanting to admit her diagnosis.
Lou
I kept my promise to Dad to look after mom his bungalow the finances and her health after he passed 30th January 2021 from terminal glioblastoma brain tumour I wish he was here their golden years of retirement didn't happen dad was a wonderful man broke my heart & to eventually lose both parents to their brains is a double blow & I worry if genetics will get me, & my husband he lost his mom to Alzheimers last year.
We are here #FORACURE we need
#CHC awarded all Dementia loved ones 2 years in from diagnosis.
They are terminal and yet they are expected to pay for what should be free care on the NHS they paid into the National Insurance scheme ALL THEIR WORKING LIVES so to me and many other families watching their savings estate rightful inheritence taken from them to pay for care in their home to help family members caring for their lived one with this horrific disease , the demise if Cognative and physical mobility.
I want the government to award #CHC to every loved one 2 years in from diagnosis, a small fully capped figure if the loved one has to go into a home,if become a danger to themselves, simply no longer live alone in their home.
I hope Keir Rachel Angela & Wes Streeting read all these family stories, ni more red tape poor assessors who have no clue about Dementia.
kind regards to everyone caring for or living with this terminal disease with no cure, even cancer has cures now.
We are here #FORACURE we need
#CHC awarded all Dementia loved ones 2 years in from diagnosis.
They are terminal and yet they are expected to pay for what should be free care on the NHS they paid into the National Insurance scheme ALL THEIR WORKING LIVES so to me and many other families watching their savings estate rightful inheritence taken from them to pay for care in their home to help family members caring for their lived one with this horrific disease , the demise if Cognative and physical mobility.
I want the government to award #CHC to every loved one 2 years in from diagnosis, a small fully capped figure if the loved one has to go into a home,if become a danger to themselves, simply no longer live alone in their home.
I hope Keir Rachel Angela & Wes Streeting read all these family stories, ni more red tape poor assessors who have no clue about Dementia.
kind regards to everyone caring for or living with this terminal disease with no cure, even cancer has cures now.
Lulu
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?