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 was diagnosed with young onset Alzheimer's in march...
I have been diagnosed with MCI, which is frustrating but manageable. My wife has memory loss, some form of Dementia, and has been put forward to a memory clinic but...
My mother, at the age of 94, began to exhibit signs...
My dad was diagnosed with Alzheimer’s in 2016 after...
I struggled to get Mum checked out. I took her to see her GP, with her permission & she was fine with it until we entered the surgery. When I explained I was concerned...
I retired early to look after my late Wife Pauline...
My mother was one of far too many to suffer and die...
My husband was eventually diagnosed in May 2019 with FTD(early onset dementia).
He struggled to accept the diagnosis and the fact he could no longer drive. He became...
This is a terrible disease, not only for the sufferer but I think even more for the carer and close Family members, one has to plan your day around the sufferer. I...
Diagnosed in 1998 with Parkinson’s my husband who...
My story is two fold in that I was diagnosed with M.S. in my early 20's. My husband became my full-time carer in the early 90's.
We started to notice that his memory...
You will never feel so helpless and alone in your life. I even found the so called professionals not very helpful. The social services, local and county, NHS etc do...
I was diagnosed with young onset Alzheimer's in march 2023 my life changed from diagnosis. my relationship with my wife changed everything changed my life and family relationships.Life can change in a minute from going to support groups to going out to lunch with the group .You make new friends and it's good to talk to other suffers who are going through the same as you. One of biggest problem is perception I do not not what day or month we are in I can be struggling day to day I seem to sleep a lot and forget what I was told by my wife so she also struggle to understand why. if it was not the support I get from the Alzheimer's society I would not be able to cope Thanks to the voices group I am in I can be positive about my diagnosis. Please when you get your diagnosis please get in touch with the society they are there to help you if you need to talk I am here to help.
Philip
I have been diagnosed with MCI, which is frustrating but manageable. My wife has memory loss, some form of Dementia, and has been put forward to a memory clinic but others tell me this can be a wait of 4 to 8 months. We read that any help is in the early stages but when/if diagnosed could it then be too late? She also is subject to falls, A & E twice, and I don't feel I can leave her alone.
Michael
My mother, at the age of 94, began to exhibit signs of dementia but remained amazingly fit and active for her age. Unmarried then, I was able to care for her, being already retired and we were living together in my house, which we had shared for several years. Over the next 2 years, her condition steadily deteriorated, her personality underwent change, and she developed uncharacteristic attitudes. I could not absent myself without paying for some temporary carers for overnight or weekend cover, and had to arrange respite care in a care home for periods of a week or more. I experienced the constant worry of arranging necessary care, and watched as she gradually lost control of her life. She did not like to go to any social circles, and hated to have to go into residential respite care. I had no close family support (brother and sister living too far distant) and the 24/7 responsibility began to take its toll upon me, and my wellbeing began to suffer. After much heart-searching, I had to take the hardest decision of my life - to arrange permanent residential care for my mother in an appropriate institution. I found the best one I could in the local area, and booked her place for February 2016. She was aware enough to know what was happening on the admission day, and I had to have my brother sit with her in the car's back seat, with the doors on child lock, so that she could not try to jump out. She did not want to be in the home, and on every visit (3 times a week) she insisted I should take her home, which was itself heart-rending. In the last week of April 2016, she suffered a massive stroke that left her paralysed on her left side, and unable to take nourishment in the hospital. Put onto palliative care, she never really regained consciousness, and died on the 5th of May. Had I known that was going to be her fate, I would have toughed it out for 3 more months so she could have stayed at home. Being her son and not her husband, I could not easily attend to her personal hygiene needs - another reason for placing her in a care home. Governments and people need to appreciate the burdens carried by those who care for victims of dementia, and the awfulness of the decisions one has to make about their futures.
PHILIP
My dad was diagnosed with Alzheimer’s in 2016 after a year of misdiagnosis. He suffered so much in the 7 years. Our family went through hell with this wonderful man. He was acutely distressed by the symptoms mostly by the paranoia and he couldn’t process what was happening. He was always a very clever practical man but he lost the ability to follow even the process of making a cup of tea, putting tea bags in the electric kettle is one example. As the disease progressed he had to be sectioned in hospital. The worse day of our lives but he was able to come home after a few weeks and stayed home through the Covid epidemic. Inevitably he grew more and more frail eventually he died because he couldn’t fight off a bout of flu. The suffering he went through haunts the family leaving us feeling unable to face life without him at times we miss him so much. People need to realise that dementia is not a mental disorder it is a symptom of a medical disorder, as anyone with any brain injury can suffer. Misdiagnosis due to unwillingness to invest in scans and other diagnostic opportunities just prolongs the agony leaving less time to prepare and try any treatments. The new drug therapy that is now available may save the NHS billions in treating the physical and psychological symptoms suffered not just by the patient but by the carers.
Linda
I struggled to get Mum checked out. I took her to see her GP, with her permission & she was fine with it until we entered the surgery. When I explained I was concerned as Mum was forgetting things & I'd like her checked, Mum said "I'm fine, she just thinks I'm going doolally". The GP accepted this & did nothing. It took another 5 years to get Mum diagnosed with Alzheimer's & Vascular Dementia. She died a few months later, without having successful medication.
Angela
I retired early to look after my late Wife Pauline soon after her diagnosis & we had 10 years together before her death . During this time her condition advanced & I discovered NHS had available "Continuing Healthcare" provision which was assessed on a "Needs Basis" rather than the Social Security "Means Tested" arrangements. Alzheimer's Disease is a "Primary Health Need" so will qualify for help provided the daily health situation is impossible to manage without help. We qualified but this was only after an Appeal as I was not familiar with the requirements of the Assessment Procedure.
Peter
My mother was one of far too many to suffer and die from dementia, in her case in addition to covid. I spent several stressful years supporting her to stay home. The stress has to be experienced to be believed. Eventually, having day carers was not enough and social services would not fund overnight care. She had to spend almost all the income she had from reluctantly selling her house and take out a very expensive insurance policy to ensure her care home fees would be met when those funds ran out. In the event she did not need that policy, dying a few months before her money was spent. She was fortunate in having a place in a small, slightly shabby local care home with some staff who cared for all residents with love and attention. Being very hard of hearing and with poor eyesight, that individual care and good communication was vital for her wellbeing. Your manifesto, particularly in relation to costs and training care home staff, would help so many if this government implemented it. Too late for my mother but not for the many more people with dementia and their families.
Sarah
My husband was eventually diagnosed in May 2019 with FTD(early onset dementia).
He struggled to accept the diagnosis and the fact he could no longer drive. He became very frustrated over this & would contact the DVLA & local GP constantly over this.
During this time we had very little support and when Covid arrived this was cut altogether. He became more aggressive as his movements and outings became limited and was eventually sectioned in April 2020.
He obviously could not be visited by myself and family due to the rules and he became more difficult. He was transferred to a different setting & then caught Covid when he was admitted to hospital due to becoming de-hydrated & refusing food. After being sent from one place to another and told he would die soon, I requested he be sent home for us as a family to take care if him with help if some lovely carers and nurses from our local hospice. My husband died 10 days after coming home, on Father's Day 2020. Our wish is for the government & GPs to provide more support and resources not only for the dementia patient but also practicle advice and support for the family too.
He struggled to accept the diagnosis and the fact he could no longer drive. He became very frustrated over this & would contact the DVLA & local GP constantly over this.
During this time we had very little support and when Covid arrived this was cut altogether. He became more aggressive as his movements and outings became limited and was eventually sectioned in April 2020.
He obviously could not be visited by myself and family due to the rules and he became more difficult. He was transferred to a different setting & then caught Covid when he was admitted to hospital due to becoming de-hydrated & refusing food. After being sent from one place to another and told he would die soon, I requested he be sent home for us as a family to take care if him with help if some lovely carers and nurses from our local hospice. My husband died 10 days after coming home, on Father's Day 2020. Our wish is for the government & GPs to provide more support and resources not only for the dementia patient but also practicle advice and support for the family too.
Kim
This is a terrible disease, not only for the sufferer but I think even more for the carer and close Family members, one has to plan your day around the sufferer. I live in a fairly rural area, the only town with decent shops being some distance away. I could not go shopping alone, as I always had to,take my dearest late wife with me, in case she wandered off or hurt herself whilst alone. She was unable to even put her seat belt on without assistance. She fell out of bed once and cut her head, I called for assistance and a couple of paranurses arrive. Due to her head injury it was decided to take her to hospital to have an x ray. She never came out, dying in hospital. It was time of Covid, so I could not even visit her, until the very end. She eventually died, I holding her hand. I miss her very much, and always will
Michael
Diagnosed in 1998 with Parkinson’s my husband who retired from university lecturing in 2004 ran our retirement business until 2015. When Lewy body dementia set in but didn’t become really evident until he was confined during COVID. I protested with Alzheimer’s at the time because it did so much damage.. (On Skye news).
The picture shows the isolation they experience. It was taken at a joyful garden party where everyone else was chatting. We took a lot of pictures which tell that story. Which we could share if you wanted.
My husband can’t speak, move and is locked into his own thoughts. Or recognise me..
Our fight to get government funding CHC has taken 10 years and we have sold everything £650,000 before we had funding.
The picture shows the isolation they experience. It was taken at a joyful garden party where everyone else was chatting. We took a lot of pictures which tell that story. Which we could share if you wanted.
My husband can’t speak, move and is locked into his own thoughts. Or recognise me..
Our fight to get government funding CHC has taken 10 years and we have sold everything £650,000 before we had funding.
Paula
My story is two fold in that I was diagnosed with M.S. in my early 20's. My husband became my full-time carer in the early 90's.
We started to notice that his memory was getting worse and he was diagnosed with Early Onset Dementia in the mid 2010's.
His memory continues to deteriorate and his walking has deteriorated into an extremely slow shuffle to where he is unsafe to go out alone.
I feel we have terrible trouble getting the support we need and that's very frustrating. I constantly feel as though I'm banging my head against a brick wall.
After over 40 years of marriage I have trouble seeing where we will be in 5 years time - the future looks extremely bleak.
We started to notice that his memory was getting worse and he was diagnosed with Early Onset Dementia in the mid 2010's.
His memory continues to deteriorate and his walking has deteriorated into an extremely slow shuffle to where he is unsafe to go out alone.
I feel we have terrible trouble getting the support we need and that's very frustrating. I constantly feel as though I'm banging my head against a brick wall.
After over 40 years of marriage I have trouble seeing where we will be in 5 years time - the future looks extremely bleak.
Linda
You will never feel so helpless and alone in your life. I even found the so called professionals not very helpful. The social services, local and county, NHS etc do not coordinate. If you are lucky enough to receive CHC it is not enough for private care homes. Social services are not able to recommend care homes so how do you choose one. Care homes do not advertise their fees so you have to approach each one.
john
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?