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.
I was 46 years old when I started having problems I...
Both my parents were diagnosed with dementia...my father in the 90's and my mother by 2000. My sisters and I witnessed the dreadful deterioration in their mental...
We finally got a diagnosis for Nan but it was far too...
My mum was diagnosed with dementia & had to go into a...
How can I put in 250 words what our grandmother meant to us how heartbreaking it was to see her in a bed not knowing anyone she was the heart if our family lived a few...
My wife Susan, a lecturer at Sussex University and...
My Mum, who passed away 6 years ago, was diagnosed...
When my mother was diagnosed it was the realisation...
I am referring back over ten years, to my Mother's diagnoses of Vascular dementia. It had taken many months to get the tests and diagnosis during which Mum was...
The diagnosis for my dad was too long. Waiting in limbo for 6 months to get a diagnosis and then after the diagnosis receiving minimal to no help. Diagnosis of...
My daughter who has Downs Syndrome,epilepsy,...
I looked after my lovely husband for four years with vascular dementia.it was the hardest thing I've ever done,I became a prisoner in my own home,he couldn't be left...
I was 46 years old when I started having problems I went to the doctor and then to a memory clinic I kept getting told your too young to have dementia I had three MRI scans and kept getting tested which I done okay but the one I kept falling on was the short story and the address I then got a letter from UCLH to go and have a pet scan which i did I then got told I have Lewy body dementia with Parkinson I was 48 when I finally got my diagnosis my life started at that point but for my family it was like a nuclear bomb had gone off six years in now but still facing stigma and isolation from general public and from health professionals but I made a promise to myself that I would help to change the way people think about dementia I helped to co-create a young onset service in mid and south Essex I also volunteer at the Alzheimer’s Society and involved in a few other projects but the best thing about a diagnosis is you now no why you forget things or keep falling over if you can get a quick diagnosis you can start enjoying life to the max and make found memories
Paul
Both my parents were diagnosed with dementia...my father in the 90's and my mother by 2000. My sisters and I witnessed the dreadful deterioration in their mental capacities and their changes in personalities. It was heart breaking, we didn't live near the family home and endeavoured to support them but eventually had to accept that they needed care and they both died in care homes. I think the worst aspect of this disease is the inevitability of the outcome, and the sense of powerlessness. Carers are onlookers, trying desperately to do something to help, but fundamentally there is nothing you CAN do. I now run a Singing to Remember group which is my way of helping others with this diagnosis to have fun and enjoy others' company....my Dad particularly would love to have had this experience, I know, and I think of both him and my mum when I am singing. Music, and singing are therapy and every neighbourhood needs to have a group for people with dementia to attend.
Monica
We finally got a diagnosis for Nan but it was far too late and we therefore never got the chance to arrange her any support in her own home. She was placed in a care home and then died alone during lockdown. I will never get over it. I would like to see earlier diagnosis and proper support for patients and their families. Once you know what you’re dealing with, you can take action before matters are taken out of your hands like with my beautiful nan.
Sarah
My mum was diagnosed with dementia & had to go into a care home where she was cared for very well but sadly caught Covid while in there & died.
She used to be a florist making beautiful flowers & a very strong astute person. Dementia can happen to anyone & needs more help from the government to help both the victims & the carers.
I miss her smile everyday.
She used to be a florist making beautiful flowers & a very strong astute person. Dementia can happen to anyone & needs more help from the government to help both the victims & the carers.
I miss her smile everyday.
Ann
How can I put in 250 words what our grandmother meant to us how heartbreaking it was to see her in a bed not knowing anyone she was the heart if our family lived a few doors from my uncle who ignored the symptoms saw her as disgusting annoying they didn’t look further than that so my gran suffered from malnutrition because she was paranoid when my sister discovered how bad it was she bought her to me my mum worked full time with her brother who was supposed to be caring for her,
As a family we all rallied she was still gran and from time to time we saw her we’d laugh and say ‘she’s back’it was bitter sweet the more we learnt the sadder it was but never did we not want gran we did it together eventually she disappeared into a world we couldn’t access she was in bed had careers we all still went to speak to her about our lives never knowing if she understood I know it broke my mum’s heart but right to the end she stayed at home with mum and we all helped, at her funeral I never felt the loss we had lost her years before but her character was always there, her memory not, as a family we coped somehow my favourite memory was when my daughter was born my gran thought it was hers from then on whenever she stayed with me she held my daughter even feeding her angel cake before she’d started solids now mums gone my big sisters gone but we had them til the end unlike nan we lost her bit by bit never knowing what she remember or who she was
As a family we all rallied she was still gran and from time to time we saw her we’d laugh and say ‘she’s back’it was bitter sweet the more we learnt the sadder it was but never did we not want gran we did it together eventually she disappeared into a world we couldn’t access she was in bed had careers we all still went to speak to her about our lives never knowing if she understood I know it broke my mum’s heart but right to the end she stayed at home with mum and we all helped, at her funeral I never felt the loss we had lost her years before but her character was always there, her memory not, as a family we coped somehow my favourite memory was when my daughter was born my gran thought it was hers from then on whenever she stayed with me she held my daughter even feeding her angel cake before she’d started solids now mums gone my big sisters gone but we had them til the end unlike nan we lost her bit by bit never knowing what she remember or who she was
Pat
My wife Susan, a lecturer at Sussex University and working in education, particularly with women returners and community projects, started showing unusual symptoms in 2011.
These included losing words on a page and erratic driving.
We were referred to the DGH Ophthalmology department for eye tests which were inconclusive, and at one point to the Haywards Heath Neurology department. Here an excellent doctor did a series of tests with Susan; her report mentioned the possibility of PCA, but this wasn’t followed up.
As the condition worsened Susan had to stop working, driving and her beloved archaeology.
Eventually in October 2013, we had an appointment with a consultant at Sussex university. He confirmed the devastating diagnosis- Susan has Posterior Cortical Atrophy, PCA.
The news was given without sensitivity ‘You will go blind, it is terminal and there is no cure in sight’ and there was no follow up.
We started doing our own research and contacted the Dementia Research Centre at Queen Square UCL emailing Seb Crutch.
Susan quickly signed up to numerous studies, including two long scans for Amyloid and Tau proteins. This research is now bearing fruit.
I have the highest regard for the professors, doctors, researchers and nurses at DRC and UCL, who have helped us with the disease as it has progressed.
About 13 years later we are heading for the last stages and I am determined to keep Susan here at home, with support, for as long as possible.
Susan and I agree that she would want a peaceful, pain free death, in familiar surroundings and she and our excellent GP have signed at DNR form.
Several friends have died from other dementias and PCA, a Rare Dementia, is certainly not the worst.
These included losing words on a page and erratic driving.
We were referred to the DGH Ophthalmology department for eye tests which were inconclusive, and at one point to the Haywards Heath Neurology department. Here an excellent doctor did a series of tests with Susan; her report mentioned the possibility of PCA, but this wasn’t followed up.
As the condition worsened Susan had to stop working, driving and her beloved archaeology.
Eventually in October 2013, we had an appointment with a consultant at Sussex university. He confirmed the devastating diagnosis- Susan has Posterior Cortical Atrophy, PCA.
The news was given without sensitivity ‘You will go blind, it is terminal and there is no cure in sight’ and there was no follow up.
We started doing our own research and contacted the Dementia Research Centre at Queen Square UCL emailing Seb Crutch.
Susan quickly signed up to numerous studies, including two long scans for Amyloid and Tau proteins. This research is now bearing fruit.
I have the highest regard for the professors, doctors, researchers and nurses at DRC and UCL, who have helped us with the disease as it has progressed.
About 13 years later we are heading for the last stages and I am determined to keep Susan here at home, with support, for as long as possible.
Susan and I agree that she would want a peaceful, pain free death, in familiar surroundings and she and our excellent GP have signed at DNR form.
Several friends have died from other dementias and PCA, a Rare Dementia, is certainly not the worst.
Chris
My Mum, who passed away 6 years ago, was diagnosed with Alzheimer's after many visits to memory clinics etc. Her partner, his daughter, & myself, cared for her as she got worse, over 7 years, but when her partner passed away, she came to live with me. I worked evenings & weekends at a club, & had to take Mum with me & leave my husband there later on. This started to impact our lives massively, & as Mum's health declined, she had to go to a care home. They were very good, to be fair, but the cost was crippling. Luckily, Mum had the money put away to pay for it ( my inheritance)! I didn't begrudge it, of course, as her health always came first, but there must be so many people struggling to pay for this much needed care. I struggled to find a suitable care home, & was extremely lucky to find a good one, but sadly, everyone isn't as fortunate I'm finding the good care that I did. Alzheimer's is an illness that is truly heartbreaking.
Kathryn
When my mother was diagnosed it was the realisation of her greatest fear, having watched her mother deteriorate and die from the illness.
Her way of dealing with the diagnosis was denial. We were not allowed to talk or mention Mum’s diagnosis.
My father cared for my mother but didn’t claim any allowances, or talk to us. He also failed to arrange a power of attorney.
After his sudden death it left us with a lot to sort out at a very difficult time.
It would have been much better if on getting the diagnosis they had planned for the future.
I am happy that we were able to care for Mum ourselves to the end of this horrible illness but knowing her wishes would have been helpful.
Her way of dealing with the diagnosis was denial. We were not allowed to talk or mention Mum’s diagnosis.
My father cared for my mother but didn’t claim any allowances, or talk to us. He also failed to arrange a power of attorney.
After his sudden death it left us with a lot to sort out at a very difficult time.
It would have been much better if on getting the diagnosis they had planned for the future.
I am happy that we were able to care for Mum ourselves to the end of this horrible illness but knowing her wishes would have been helpful.
Gillian
I am referring back over ten years, to my Mother's diagnoses of Vascular dementia. It had taken many months to get the tests and diagnosis during which Mum was frustrated with herself, feeling stupid when she couldn't function as she used to. Getting the diagnosis gave her a reason not to feel to blame for her increasing need for help.
Sadly, as she was sufficiently self funding, we found it increasingly difficult to obtain help and advice. It seemed to a case of sort it out yourselves. It would have been so much better if the advice side of things had been just as readily available to self funders as to those for whom publicly provided assistance was given.
Sadly, as she was sufficiently self funding, we found it increasingly difficult to obtain help and advice. It seemed to a case of sort it out yourselves. It would have been so much better if the advice side of things had been just as readily available to self funders as to those for whom publicly provided assistance was given.
Christine
The diagnosis for my dad was too long. Waiting in limbo for 6 months to get a diagnosis and then after the diagnosis receiving minimal to no help. Diagnosis of dementia will always be difficult to hear but it’s important and there should be more access to help and support afterwards. We basically had the diagnosis of that’s what the test says, sorry and good bye. We had to find support alone and most of those were run by charities.
I’d love to see more support for families and more access to respite care, even if it’s just day centres to help. Just anything really! A few of the places my dad used to go have closed due to lack of funding or having to move pricing up that then some people can’t afford to go any more. Care homes shouldn’t be for profit. My dad was in a care home for nearly 5 years and it was £650 a week when he went in mid 2019. Now in 2024 the fees are around £1200 per week. It’s not affordable and there’s naturally a fight to get any support for help with funding dementia care.p
I’d love to see more support for families and more access to respite care, even if it’s just day centres to help. Just anything really! A few of the places my dad used to go have closed due to lack of funding or having to move pricing up that then some people can’t afford to go any more. Care homes shouldn’t be for profit. My dad was in a care home for nearly 5 years and it was £650 a week when he went in mid 2019. Now in 2024 the fees are around £1200 per week. It’s not affordable and there’s naturally a fight to get any support for help with funding dementia care.p
Jess
My daughter who has Downs Syndrome,epilepsy, hypothyroidism,Deafness and what I consider the worst of all,Dementia. People with L/D are rarely considered and their Carers in my opinion (especially elderly) even less so.This area should be as important ,but different. Havnt seen anything that gives me hope yet.
Jill
I looked after my lovely husband for four years with vascular dementia.it was the hardest thing I've ever done,I became a prisoner in my own home,he couldn't be left because he would wander off.,us who look after our loved ones are the forgotten carers.we care 24/7. And ask for nothing,
The laws need changing its a terrible cruel disease which is still taboo.my husband would have seizures and would have to be admitted to hospital but they're aren't enough trained nurses and also no time to care for the dementia patient,my husband was sedated all the time to keep him quiet,how cruel is that.
We need change.
The laws need changing its a terrible cruel disease which is still taboo.my husband would have seizures and would have to be admitted to hospital but they're aren't enough trained nurses and also no time to care for the dementia patient,my husband was sedated all the time to keep him quiet,how cruel is that.
We need change.
Christine
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?