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.
My beautiful niece now 53yrs as been suffering with early onset dementia for about 5-8yrs..Shes lived with her childhood sweetheart for many years..She was working on...
I live in a independent care home and we have a few people with Alzimers and we treat them with the same as us. It's a illness and you do not know that one day it...
Both my parents have Alzheimer's Dementia which is...
My husband was diagnosed with dementia in December...
My Dad was diagnosed with dementia in 2015 after many...
In 2023 I went through a series of Psychology ...
My wife Jan was diagnosed with vascular dementia in 2015 and this developed into Alzheimer's disease. The effect on our family was profound, of course. We had been...
My sister has Alzheimer’s disease & was diagnosed 8 years ago just a few months after her husband passed away. She is the best sister I could have. She was the...
Peter and Maria, Burnley Lancs. I was diagnosed with young onset Alzheimer's 4yrs ago, aged 62.The 1st year was difficult getting the right support...Extremly tired a...
This is such a cruel disease. My husband is 76 with Vascular Dementia & also unable to walk I have watched him decline very rapidly over 8 months from a bright,...
Hubby started to exhibit symptoms during 2020, but because of covid I couldn’t get to talk to any healthcare professional. We went to the local Nuffield hospital....
My wonderful Mum was diagnosed at 54 years old ,...
My beautiful niece now 53yrs as been suffering with early onset dementia for about 5-8yrs..Shes lived with her childhood sweetheart for many years..She was working on a well known Airline for about 30yrs..as No.1 cabin crew..she has no children and her parents have been very supportive my 5 sisters and I have
been taking her out regularly..Sadly her mother my loving caring sister past away 2 months ago..due to terminal cancer ..although my niece has been told of her mother's passing its so sad to see thus beautiful person .. inside and out..deteriorating before our eyes ...is utterly cruel abd heart breaking..to us all..her family friends and ex colleagues..💔 I am taking this beautiful Angel out for lunch with my sister today .LOVE HER SO MUCH X............JOAN.
been taking her out regularly..Sadly her mother my loving caring sister past away 2 months ago..due to terminal cancer ..although my niece has been told of her mother's passing its so sad to see thus beautiful person .. inside and out..deteriorating before our eyes ...is utterly cruel abd heart breaking..to us all..her family friends and ex colleagues..💔 I am taking this beautiful Angel out for lunch with my sister today .LOVE HER SO MUCH X............JOAN.
Joan
I live in a independent care home and we have a few people with Alzimers and we treat them with the same as us. It's a illness and you do not know that one day it may elect you
Betty
Both my parents have Alzheimer's Dementia which is very prevalent in both families. We are from South Africa, Johannesburg. I am with them 24/7.
My biggest concern is that they are at a stage where they require full-time medical care. I am not able to provide due to financial constraints. There are no resources for care for those who can not afford much-needed help and they are falling through the cracks, It is heartbreaking as they are already suffering from this disease which is draining the life out of them as well as those closest to them.
Where does one go from here, except prayer, faith, and taking it day by day?
My biggest concern is that they are at a stage where they require full-time medical care. I am not able to provide due to financial constraints. There are no resources for care for those who can not afford much-needed help and they are falling through the cracks, It is heartbreaking as they are already suffering from this disease which is draining the life out of them as well as those closest to them.
Where does one go from here, except prayer, faith, and taking it day by day?
Nathasea
My husband was diagnosed with dementia in December 2012. He passed away December 2017. I was able to care for him at home until the last three weeks of his life. It was a tremendous strain for five years however. I could not afford nursing home care, especially in the rural Alaska community in which we lived. We did the best we could cobbling together care with friends, our parish community and a kind caregiver who took over when I went to work. I want our government leaders to know that Alzheimer's is an epidemic in this country and the many who live in remote communities are especially isolated. We need affordable care, help with the costs of care giving and above all -- funding for research to end this disease.
Debra
My Dad was diagnosed with dementia in 2015 after many years of family denial and failure to diagnose the previous year. He was my person. The reality of a loved one changing so drastically is devastating. The trust we shared turned into doubt and fear. The bond we shared as father and daughter was fractured and he became someone that I could no longer communicate with and who lashed out and lost control. The decisions that I had to take regarding his care were heartbreaking and the things that I went through with him and was forced to witnessed were things no daughter should have to see….. he passed away in 2016 aged 69. It wasn’t his time but I’m sure the release was a relief to him. Then two years later in 2018 my mum started showing similar, all too familiar signs. She was diagnosed in 2021 after an equally painful battle, fraught with denial and objection. I have spent the past 3 years trying to keep her living independently for as long as possible because she didn’t want to be in a care home but that recently became heartbreakingly impossible and she has been in a home for three months now. I hate dementia. It has robbed me of my family. It has robbed my children of their grandparents and I fear for my own future.
Kate
In 2023 I went through a series of Psychology tests.
This enabled a diagnosis of (MCI) this was a bitter:/sweet outcome!
What do I mean?
The fact that h the results of the tests and CT Scan confirmed that changes in my Brain white matter had occurred.
So with increasing of balance and falls occurring we now know what we are faced with!
This has I believe has impacted more on my wife as the role of my main carer!
This enabled a diagnosis of (MCI) this was a bitter:/sweet outcome!
What do I mean?
The fact that h the results of the tests and CT Scan confirmed that changes in my Brain white matter had occurred.
So with increasing of balance and falls occurring we now know what we are faced with!
This has I believe has impacted more on my wife as the role of my main carer!
John
My wife Jan was diagnosed with vascular dementia in 2015 and this developed into Alzheimer's disease. The effect on our family was profound, of course. We had been married for over 56 years and it's heart-breaking that she died in 2021.
For the first few years, through the early signs of something being wrong, I had to support her on a daily basis - I knew what a diagnosis of Alzheimer's meant, but I had to face it, reminded constantly that the shouting, the confusion, the violence, the loss of physical and emotional control, the sadness was not Jan, but the disease.
I eventually had to sell our family home to pay for Jan’s care. Not only did Alzheimer's take away my wife, but my home too.
She lost too many years of her life to Alzheimer's and her happy retirement was cut cruelly short. She spent the last years of her life in a care home that specialised in dementia – she had no idea where she was but was relatively happy there – warm, well fed and well looked after. We quickly noticed that she enjoyed the company of a small plastic doll that the Home had brought into her room – hearing of this, one of our friends gave us a doll from her collection - a life-size baby doll with touchy-feely skin and real blonde hair. When we first presented this to Jan she said “Hullo darling”, and refused to let go of it – it stayed with her for the rest of her life, and towards the end, even when she didn’t recognise us or talk to us, the doll could still generate a smile and a “Hullo darling”. It is said that ladies with dementia can forget everything except that they were once a mother – Daisy, as the doll became to be called, was living proof of this. Quite wonderful. And although Jan has gone, Daisy stayed behind at the care home to bring some joy to another resident.
There is no cure for Alzheimer's. That's why continued research and testing is vital to ensure we can get a better understanding of why it affects so many and what can be done to treat it effectively.
For the first few years, through the early signs of something being wrong, I had to support her on a daily basis - I knew what a diagnosis of Alzheimer's meant, but I had to face it, reminded constantly that the shouting, the confusion, the violence, the loss of physical and emotional control, the sadness was not Jan, but the disease.
I eventually had to sell our family home to pay for Jan’s care. Not only did Alzheimer's take away my wife, but my home too.
She lost too many years of her life to Alzheimer's and her happy retirement was cut cruelly short. She spent the last years of her life in a care home that specialised in dementia – she had no idea where she was but was relatively happy there – warm, well fed and well looked after. We quickly noticed that she enjoyed the company of a small plastic doll that the Home had brought into her room – hearing of this, one of our friends gave us a doll from her collection - a life-size baby doll with touchy-feely skin and real blonde hair. When we first presented this to Jan she said “Hullo darling”, and refused to let go of it – it stayed with her for the rest of her life, and towards the end, even when she didn’t recognise us or talk to us, the doll could still generate a smile and a “Hullo darling”. It is said that ladies with dementia can forget everything except that they were once a mother – Daisy, as the doll became to be called, was living proof of this. Quite wonderful. And although Jan has gone, Daisy stayed behind at the care home to bring some joy to another resident.
There is no cure for Alzheimer's. That's why continued research and testing is vital to ensure we can get a better understanding of why it affects so many and what can be done to treat it effectively.
John
My sister has Alzheimer’s disease & was diagnosed 8 years ago just a few months after her husband passed away. She is the best sister I could have. She was the eldest daughter of nine children & I was the youngest child & she practically bought me up. Our dad died on my 13th birthday & I was absolutely devastated as he was my idol. My sister who was married by then with children of her own, took me to stay with her & her family for a while. One night she took me in to her garden, put her arm around me & pointed to the brightest star in the sky & said that is our dad & he will always be watching over us, 57 years later I still remember that. Unfortunately my sister is now in a care home & needs everything done for her. I visit her every week & she still knows who I am, but doesn’t know what day it is or where she is. It’s heartbreaking to see the sister who bought me up & her six children but she cannot remember things that happen each day but can talk about things from years ago. She is now 85 years old & I love her very much. I donate to Alzheimer’s research every month & think it is an amazing charity who do amazing work.
Susan
Peter and Maria, Burnley Lancs. I was diagnosed with young onset Alzheimer's 4yrs ago, aged 62.The 1st year was difficult getting the right support...Extremly tired a lot, sleeping during the day, spaced out the 1st 3/4 hrs in a morning also easily agitated and restless... Maria,s is wonderful, but getting weary, So we've now got a Admiral Nurse. God Bless to ALL affected with Dementia, especially family members.
Peter
This is such a cruel disease. My husband is 76 with Vascular Dementia & also unable to walk I have watched him decline very rapidly over 8 months from a bright, intelligent, lovely man whom I married 43 years ago, to the shell of a man he was. He was interested in lots of things, loved TV, music, DIY & food. Today he is lying in a hospital bed not interested in anything & shouting out all the time if I am not with him, refusing food & exercise. He doesn't know what he is saying, gets so mixed up & upset it breaks my heart. He is waiting to go into a care home now as I cannot manage him any more & I can't stop crying. It is so, so awful.
Sylvia
Hubby started to exhibit symptoms during 2020, but because of covid I couldn’t get to talk to any healthcare professional. We went to the local Nuffield hospital. Even then it was a 3 month wait. He was put on riverstigmain patches, but I haven’t always thought they did any good, but how can I tell? He is now 85 and we still go on holiday, he walks slowly, but we get around, the real problem is the incontinence, not the wee, the bowels. I buy the pants, and put a small liner inside at the back that’s for men’s water, which is waterproof . I just wish I could find something that I could put in that I could remove and put in the toilet. It doesn’t seem right to put that stuff in the bin. My son says to get a nappy bin, so I will try that. Imodium is useful when we are going out. And I have to hide the chocolate. People go on about dementia sufferers repeating themselves, if that was all I had to worry about, I would be happy. It’s me that repeats myself, but he cannot do what I say anymore, and I say he has ataxia, which means he cannt see things properly, or cannt recognise them. It’s such a shame as on the whole he is quite fit, and I get very tired doing everything. I am going to try to get more help,
Sylvia
My wonderful Mum was diagnosed at 54 years old , after a battle for diagnosis , being told her symptoms were merely the Menopause.
Myself and my sister were teenagers at the time and this news devastated us. We had to make the hugely difficult decision to place Mum in a nursing home which was completely heartbreaking however she was really well cared for and remained there for 10 years until she sadly passed in 2023.
I will continually raise awareness about the devastating disease in whichever way I can - I fundraise every year to raise money for your charity as I believe it’s SO important for people to get a diagnosis earlier.
Myself and my sister were teenagers at the time and this news devastated us. We had to make the hugely difficult decision to place Mum in a nursing home which was completely heartbreaking however she was really well cared for and remained there for 10 years until she sadly passed in 2023.
I will continually raise awareness about the devastating disease in whichever way I can - I fundraise every year to raise money for your charity as I believe it’s SO important for people to get a diagnosis earlier.
Jennifer
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?