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.
I saw first hand about the painful experience of having a loved one suffer from dementia I was full-time carer to my mother for six years and saw how it took my...
Susan and I met when she was only 17, married 2 years...
My wife Val died of Dementia 4 years ago. I have recently been interviewed and it is on Utube goodoakvcare videos 'You are not alone'
As an Anna Chaplain I take Christian worship into...
My daughter died aged 39 of bvftd. It took about 3...
My Dad suffered with Parkinson’s, and Mum was his...
My dad developed dementia a number of years ago. As...
My wife developed symptoms and failed the local Doctor dementure test miserably but nothing since apart from some injections. No help at all. We feel lost! No help at...
My lovely mum was diagnosed with mixed dementia...
My grandad was diagnosed with later stages of Alzheimer's in August 2022, for us as a family this was a sigh of relief as to why my grandad had been struggling for so...
I lost my beloved mum, Anne to dementia 9 months ago. Mum was formally diagnosed 2 years earlier and if that wasn't difficult enough to learn, it was on the 2nd...
I’m writing this just one week after losing our mum...
I saw first hand about the painful experience of having a loved one suffer from dementia I was full-time carer to my mother for six years and saw how it took my mother's wonderful character awayI would hope this new government will fully support Alzeimers Society
Andrew
Susan and I met when she was only 17, married 2 years later and moved to Dublin where we had a happy life and 2 children.
We soon moved back to Sussex where her mum was belatedly diagnosed with MND and died aged 63.
Susan was a driven woman, went to University as a mature student and had an active life in education. We had our third child in 1979 and lived the good life on an organic farm and then in a thatched cottage.
So far so good, until Susan was diagnosed with PCA, some years after showing symptoms. The next 12 years were her gradual deterioration with me acting as her carer, with brought in carers as it became more difficult. At times it was frustrating and tested my patience. In the last couple of months her deterioration speeded up, a hospital bed was installed and she died two weeks ago, aged 75, with me by her side at home.
I consider myself lucky that this Rare Dementia isn’t the worst, as we were able to hold conversations and enjoy music until quite recently. I’m immensely proud of her and love her more than ever.
We soon moved back to Sussex where her mum was belatedly diagnosed with MND and died aged 63.
Susan was a driven woman, went to University as a mature student and had an active life in education. We had our third child in 1979 and lived the good life on an organic farm and then in a thatched cottage.
So far so good, until Susan was diagnosed with PCA, some years after showing symptoms. The next 12 years were her gradual deterioration with me acting as her carer, with brought in carers as it became more difficult. At times it was frustrating and tested my patience. In the last couple of months her deterioration speeded up, a hospital bed was installed and she died two weeks ago, aged 75, with me by her side at home.
I consider myself lucky that this Rare Dementia isn’t the worst, as we were able to hold conversations and enjoy music until quite recently. I’m immensely proud of her and love her more than ever.
Chris
My wife Val died of Dementia 4 years ago. I have recently been interviewed and it is on Utube goodoakvcare videos 'You are not alone'
Howard
As an Anna Chaplain I take Christian worship into homes for the elderly and those on the dementia pathway. One old lady, who always sat in a chair slowly rocking herself, had never opened her eyes or spoken over the many years I had been visiting. One day as I was telling the story of Jesus and his love of the little children, she suddenly opened her eyes looked at me and said" I'm one of God's children and he loves me too" - closed her eyes and returned to rocking her chair. It was such a special moment and it reminded me that we should never assume that people with dementia don't hear or understand what we are saying. We should always remember that and be mindful of what we say and the words we use when we are with them.
Gaye
My daughter died aged 39 of bvftd. It took about 3 yrs to diagnose after she showed signs of what we thought was post natal depression after her first child, and then because of a nasty break up with her partner, a mental breakdown. She was initially sectioned where she was looked after very well, we visited daily and because she looked normal, was treated badly by other residents. Eventually she had many tests in many hospitals, but because of her age nobody really thought of dementia. In the end she was taken to London from the midlands for a week of tests, when she came back covered in bruises we had a diagnosis of behavioural variant fronto temporal dementia. Our lives then became a nightmare of finding a suitable residential home, getting her settled, getting to know the amazing staff, and supporting our daughter in anyway we could. Over 7rs we watched her deteorate, until she was fitted with a driver to deliver morphine, food and drink denied until she passed away 11 days later. My son and I stayed at the home during that time with the support of the wonderful staff, until she died in my arms.
Yvonne
My Dad suffered with Parkinson’s, and Mum was his main carer for over 20 years. Unfortunately Dad’s health declined and he required 24 hour care, and so went into a care home. It was then we realised that Mum was having problems of her own. She couldn’t remember how to cook, or use the phone, went wandering into neighbour’s houses, locked herself out, and just seemed so confused and angry. We (my sister who was visiting from Australia, and I) then took the hard decision to persuade Mum to stay at the care home with Dad, to ‘look after him’. She was diagnosed after 2 months there with mixed dementia. Sadly, Dad passed away after a few months, and I feel we lost Mum at the same time. Her decline after this was quick. She has never accepted Dad’s death, reliving losing him almost daily. If she’s not grieving him, she thinks he has run off and left her by having an affair (they were married for 60 years). She has become a shadow of the mum we had. She has become difficult to manage, verbally horrible, can lash out at you, but the woman I see is still my mum. This horrid disease took my kind, loving, funny Mum and destroyed her. Occasionally I get glimpses of Mum, on the rare ‘good’ days, like the sun shining briefly on a rainy day. It’s so cruel.
Susan
My dad developed dementia a number of years ago. As the advert says, they don’t die once, they die over and over again. The last time my dad said my name was 18 months before he died. He needed 24 hr care until he passed away, but continued to say the word THANKYOU, to the staff in his care home. He was 15 stone when he went into the home. When he died he was 7 St 7lbs. I spoke at his funeral, not about his life but about his contribution to the relocation of people with learning disabilities into the community - Homes not Hospitals. It’s a career which I have followed and am now retiring from. My dad was a member of MENSA, something I spoke about at his funeral. His IQ was 159, that’s in the top 1% of the population. I am forever proud of him and his dedication to those that mattered most, those that should never have been in hospital . Love you dad ❤️
Paul
My wife developed symptoms and failed the local Doctor dementure test miserably but nothing since apart from some injections. No help at all. We feel lost! No help at all!
Paul
My lovely mum was diagnosed with mixed dementia (vascular dementia : Alzheimer’s disease) following a sudden stroke in 2016.
Over the past eight years, I have been to hell and back and feel I have aged 20 years myself. I have lost my mum along with my hopes dreams and confidence.
I believe main issue is that my mum needs more care than agencies or care providers can give - she had limited funds to pay for the care she really needed.
So I took on that responsibility and became one of the hidden army of unpaid carers which hold up the brokering health and social care system.
I have been ‘caring’ for my mum over 30 hours a week for over 6 years . I have essentially had to give up my own life, career/ social activities - all the things I enjoyed and made me ‘me’
I have rarely had a break - even on the very rare occasions I have had a break to spend time with my husband and children, all my time away from her I was worried - I how found it very difficult to ‘relax’ constant waiting for a call or just worrying about the next steps in this hellish nightmare.
I feel very ‘stuck’ in this situation, stuck between guilt for not being able to hold down a job that allows me to also care for my mum , enjoy my ‘free time’ with friends family and guilt of leaving my mum.
As a carer, my own needs are being neglected - but this seems to be an 'expectation' of family carers - in order to continue to care we need financial and practical support and some quality respite from care!
As a carer for my mum I am also living with dementia! with little financial or practical support - which is unfair - or the alternative is to put parents into a care home! And live with the guilt of ‘giving up on them’!
In my opinion there should be something 'half way' - busy 'adult daycare' does not suit everyone - dementia care should be treated differently, the individual should have a tailored package of care with a small dedicated skilled team of carers who understand the complexities of dementia and understand how to effectively communicate and work with them to maintain their independence, and enjoy their lives for as long as possible.
This means giving carers sufficient time to form relationships with clients - not 15 minutes to rush in and out just to the bare necessities. Each visit needs to be an hour to ensure the carer has sufficient time not to rush their client and ensure all care needs are met.
If dementia carers are able get to know their clients and families - taking an integrated approach alongside social workers / social prescribers we could support people living with dementia to become more confident and reintegrate in their communities - and in the process forge a greater understanding and tolerance of this cruel disease.
A community which provides support for the family as well as the person living with dementia would cause less isolation and loneliness - living with Dementia is not something to be ashamed of and hidden - but currently it is an ‘hidden illness’ which is ignored or stigmatised.
If you have not personally been touched by dementia, you have NO idea of the devastation it brings on families. Particularly more disadvantaged people who cannot afford private care.
It strips the family of everything, their memories, their personality, their dignity and their finances. Something needs to change now!
Over the past eight years, I have been to hell and back and feel I have aged 20 years myself. I have lost my mum along with my hopes dreams and confidence.
I believe main issue is that my mum needs more care than agencies or care providers can give - she had limited funds to pay for the care she really needed.
So I took on that responsibility and became one of the hidden army of unpaid carers which hold up the brokering health and social care system.
I have been ‘caring’ for my mum over 30 hours a week for over 6 years . I have essentially had to give up my own life, career/ social activities - all the things I enjoyed and made me ‘me’
I have rarely had a break - even on the very rare occasions I have had a break to spend time with my husband and children, all my time away from her I was worried - I how found it very difficult to ‘relax’ constant waiting for a call or just worrying about the next steps in this hellish nightmare.
I feel very ‘stuck’ in this situation, stuck between guilt for not being able to hold down a job that allows me to also care for my mum , enjoy my ‘free time’ with friends family and guilt of leaving my mum.
As a carer, my own needs are being neglected - but this seems to be an 'expectation' of family carers - in order to continue to care we need financial and practical support and some quality respite from care!
As a carer for my mum I am also living with dementia! with little financial or practical support - which is unfair - or the alternative is to put parents into a care home! And live with the guilt of ‘giving up on them’!
In my opinion there should be something 'half way' - busy 'adult daycare' does not suit everyone - dementia care should be treated differently, the individual should have a tailored package of care with a small dedicated skilled team of carers who understand the complexities of dementia and understand how to effectively communicate and work with them to maintain their independence, and enjoy their lives for as long as possible.
This means giving carers sufficient time to form relationships with clients - not 15 minutes to rush in and out just to the bare necessities. Each visit needs to be an hour to ensure the carer has sufficient time not to rush their client and ensure all care needs are met.
If dementia carers are able get to know their clients and families - taking an integrated approach alongside social workers / social prescribers we could support people living with dementia to become more confident and reintegrate in their communities - and in the process forge a greater understanding and tolerance of this cruel disease.
A community which provides support for the family as well as the person living with dementia would cause less isolation and loneliness - living with Dementia is not something to be ashamed of and hidden - but currently it is an ‘hidden illness’ which is ignored or stigmatised.
If you have not personally been touched by dementia, you have NO idea of the devastation it brings on families. Particularly more disadvantaged people who cannot afford private care.
It strips the family of everything, their memories, their personality, their dignity and their finances. Something needs to change now!
Wendy
My grandad was diagnosed with later stages of Alzheimer's in August 2022, for us as a family this was a sigh of relief as to why my grandad had been struggling for so long. My grandad would always put his forgetfulness down to "getting old" or say he was "losing the plot". These words will stick with me forever because of the struggles he went through for such a long time and no support from professionals. I fought and fought for months for a GP to come and do a memory test on my grandad, which was a struggle because he refused to go to the surgery. Finally after months of fighting we had a home visit, within 10 minutes of that doctor been in my grandma and grandads house he said he'd seen enough and was putting him in for an urgent referral, finally someone was listening, we had someone from the mental health services come and do a more in depth memory test with my grandad and arranged an urgent scan of his brain. Within weeks we had a diagnosis, my grandad at this stage was deteriorating faster than we wanted. He became a shell of himself, I tried finding support anywhere and everywhere for my grandad but unfortunately there was not much in our area. Social services weren't willing to help as they said he was too violent, he had never been violent with anyone at this point! I slowly over the next few weeks became my grandads carer, I attended every hospital appointment with him, helped him with daily living tasks and even his personal care, we tried to make light of the situation and laughed a lot of things off, just to make grandad feel "normal" as he used to say. I changed my working days and hours and suffered financial loss to support my grandad each day, this was hard as a single parent but I did this out of love for my grandad. We finally got allocated a new social worker after months of waiting, who must I say is worth her weight in gold. Anything I asked for was never too much, she visited my grandad on a few occasions and offered support with everything. Her very last visit to us as a family was to arrange for carer's to start coming in twice a day as grandad's mobility had got worse and he was struggling a lot. Unfortunately after this last visit, my grandad had a fall later the same evening and was unable to move off the tiled floor in the kitchen, paramedics arrived 4 hours later and he was taken to hospital. This is where the next part of our journey went, my grandad ended up staying in hospital for 3 months, twice in this time he was put on end of life care, he fought through it and was then transferred to a care home. My grandad was now unable to walk and was hoisted. This was a hard thing to process as he used to walk miles daily. My grandad didn't have the best time in this care home and there were a lot of concerns, we finally got him moved to a different home, this really was a home from home experience. My grandad was part of the family there and was included in everything, he never spent a day left in bed, alone, or staring at 4 walls. The carer's here were amazing, they did everything in their power to support grandad with walking again, he only took a few steps here and there but the highlight of this home was at Christmas time, when they sent me a video of my grandad, stood up dancing with a staff member. This memory is one of my favourites, he finally got to stand up one last time. Unfortunately grandad only managed another few months after his move to this care home, he was admitted to hospital quite a lot and was getting quite poorly. Grandad slowly started to forget who we all were, this was one of the hardest times, seeing your loved one not remember you. We spent a lot of time looking through his memory book of the family, he loved this as he never remembered how many children, grandchildren & great grandchildren he had, he was always amazed at this! Grandad sadly passed away in February 2024 with 1 of his sons by his side, Grandad was surrounded by the staff who truly, genuinely cared for him.
I became a dementia advisor for the Alzheimer's society in June 2024, due to my lived experience, I want to give people the best possible help and support with their diagnosis and so families get the support that is needed when caring for a loved one. No one knows the struggles that go on behind closed doors, unless you are living it yourself. I thank my grandad daily for this lived experience (the good and the bad times) so I can offer other families some support.
I became a dementia advisor for the Alzheimer's society in June 2024, due to my lived experience, I want to give people the best possible help and support with their diagnosis and so families get the support that is needed when caring for a loved one. No one knows the struggles that go on behind closed doors, unless you are living it yourself. I thank my grandad daily for this lived experience (the good and the bad times) so I can offer other families some support.
Emma
I lost my beloved mum, Anne to dementia 9 months ago. Mum was formally diagnosed 2 years earlier and if that wasn't difficult enough to learn, it was on the 2nd anniversary of my Dad's passing (of cancer not dementia). However I think mum had been gradually declining for a number of years previously but her mental decline was often passed over as her life long mental health struggles. Medication was given, but didn't really help with the dementia and the care available was limited both for mum and me. I lost mum many times in the last couple of years as the dementia took hold. Many times I shouted back at her, cried with her must but most importantly loved her to the end, as I know she did me even though she couldn't show it. Dementia is the cruellest of diseases for all and a cure needs to be found to stop everyone's pain and heartache.
Becky
I’m writing this just one week after losing our mum to this awful illness. Mum was 68 when she was diagnosed with Alzheimer’s quite young and quite a shock. And 76 when she left us. Mum was always a strong independant woman nothing fazed her , she did it all on her own bringing up 3 children and running a pub. Mum retired at 60 so her early diagnosis seemed cruel. It robbed her of her twighlight years. Luckily we had the help of an excellent dementia care team and mums last two and a half years where she was unable to communicate properly were filled with love and laughter this come at a cost though. She was lucky that we had them. They were all family to us too. Something needs to be done some people aren’t as lucky as our mum. Good night mum xx
Sarah
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?