Dementia Support Line
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Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?
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My dad was diagnosed with unspecified dementia in...
My auntie has FTD, it happened overnight. She went to...
My late husband late few years he was let down we was told he had dementia 2013 but never told he had lewy bodies and Parkinson he was earlier 60
He also went blind...
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...
My dad was diagnosed with unspecified dementia in October 2017. Following diagnosis and initial support and advice to put in place Power Of Attorney and claiming attendance allowance, you are pretty much left to work out how to live and cope on your own. We've developed strategies to support dad as best we can on a daily basis, but as you learn with this disease, some days some strategies work and some days the same strategies don't! Dad certainly keeps us on our toes. Its all the things people don't tell you that get you. No two days are the same. Knowing there's no cure and no magic pill to make my dad better and coming to terms with losing bits of him daily and getting a new version of him with every inch dementia grips is a real emotional rollacoaster. I love my dad forever and always. Support for families is pivotal in terms of ensuring families have the emotional strength to continue to care for their loved ones at home for as long as its possible. Befriending and carer support for people with dementia who may well be isolated in society is key for their continued socialising skills and mental ability.
Suzanne
My auntie has FTD, it happened overnight. She went to bed normal Ann and the following moning she didnt know me.
We have always lived together as my mum passed when I was 17.
She was sectioned that afternoon, this was all just as covid kicked off so I was unable to see her which was very distressing for both of us.
This was April 2020 and she was diagnosed in the October 2024 with FTD.
This came as a huge shock as her sister had Alzeimers so I was aware of signs to look out for but nothing with my Auntie Ann it literally felt like she lost herself overnight.
I have been massively affected by her diagnosis and the changes that have taken place.
I feel people with this illness arent looked after by the government at all as the cost of care homes is beyond a joke.
I hope in the future this changes and a cure is found for this awful disease#ANN'SARMY
We have always lived together as my mum passed when I was 17.
She was sectioned that afternoon, this was all just as covid kicked off so I was unable to see her which was very distressing for both of us.
This was April 2020 and she was diagnosed in the October 2024 with FTD.
This came as a huge shock as her sister had Alzeimers so I was aware of signs to look out for but nothing with my Auntie Ann it literally felt like she lost herself overnight.
I have been massively affected by her diagnosis and the changes that have taken place.
I feel people with this illness arent looked after by the government at all as the cost of care homes is beyond a joke.
I hope in the future this changes and a cure is found for this awful disease#ANN'SARMY
Melissa
My late husband late few years he was let down we was told he had dementia 2013 but never told he had lewy bodies and Parkinson he was earlier 60
He also went blind too
The help and advice was very very poor
He passed 2020 which made it worse trying to get support
I like to see more awareness of the different kinds of Alzheimer’s dementia
Brenda
very let down 🥲
He also went blind too
The help and advice was very very poor
He passed 2020 which made it worse trying to get support
I like to see more awareness of the different kinds of Alzheimer’s dementia
Brenda
very let down 🥲
Brenda
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
Share your diagnosis story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?