Real stories

The dementia care crisis behind closed doors

I think it time all of government done something about this now and not hope it will go away and put it on the back pack and hope will forget about this

I keep seeing comments about a them who are state funded vs those who self fund. I know there is a misperception. What is more whilst this divisive perception plays out those truly responsible will continue to ignore what is needed. Please do not think for one minute that being state funded or chc is all its cracked up to be. It brings limited choices. It brings deserving and undeserving.
The truth is the under funding continues to affect all! There are no winners when living with dementia. Coming together is the only way otherwise it diverts attention on the truth. Where money flows into bankers coffers. Oh yes our taxes all went on bankers but not on our loved ones living with dementia.

Well. Here I am again on the Eve of my Mums celebration of her life. I posted last on 9th July. Mum passed away peacefully at out home 11th July 0607hrs. We celebrate the 4 siblings had time to say our goodbyes in the comfort of our home. Mums grandchildren, great grand children and all our partners. Mum died well with dignity care and love.
Now for the sad bit. Mum was fast tracked by Community Nurse and GP on 3rd July for Continuing health care. This was declined by the CCG due to lack of evidence provided by the community Nurse. No consent form or best interest form provided. CCG said until more evidence provided fast track cannot be agreed.
Our Mum had hours to live. She is dying.
What if our Mum wanted to die at home and didn't have family to sit with her in her home in her last hours ?
Self funding people who have no advocates, family, good domiciliary care providers like i had for Mum to help me. CHC Funding isn't just about money . Its about the services that person is entitled to in their last days of life.
I spoke with continuing health care at 1530hrs on 10th July 2019. Mum died at 0607 11 July still fighting for for funding when Mum was taking her last breath.
Come on polatitions. Come on Continuing health care this has to improve. It's too late for our Mum. She has paid inaccess of 120k for her care. Let down in her last 2 weeks of her tax paying life .

My mum passed away in 2016 with FTD dementia and we cared for her at home for her last 4 months, my mum did not have to pay for 24/7 care as I'm a fully qualified Dementia specialist my dad is also a carer so my mum was extremely luck to have us by her side, I understand people frustrations with care/nursing homes and the lack of care and knowledge but please don't tarnish all carers as "abusive horrible people" I have worked with amazing carers in my career and pride myself as going above and beyond to provide quality person centred care, I'm not saying all carers are "perfect" but in my 20 years experience in the care sector I've met more exceptional people who do actually care our job is HARD WORK we have rubbish pay, long hours, bad backs from years of lifting and bending but most of us get up and go to care for the people we look after despite most of the time a very stressful ,,all I ask is that we are not looked down on and classed as "just carers" and all painted with the same brush cos believe you me we are not!

Sadly, both my parents died last February. Both had dementia. All my parents wanted was to stay together in their own home to the end of their days. Consequently, all their savings disappeared on the 24/7 care they needed. When my mum became eligible for 24/7 CHC funding they still had to pay towards my step-dad's social care as he was not CHC funded. If my mum had been on her own, nothing would have had to be paid for the 24/7 care. However, the worst thing of all was the delay and procrastination by the 2 funding bodies (NHS and social services) to agree mum's care plan and how the two different funding structures would resolve the situation, whereby two people were living together at home and recieving support towards their care from different funding sources. This is still very painful to recall. Both parents were unwell and near end of life. When I should have been spending more time with them, I was having to try and get the funding sorted.

Of course we need properly funded care. Please will politicians firstly look at what we spend on and where we waste money and then make an admittedly probably unpopular, but necessary decision, to put a little more on tax or National Insurance, ring fence it and use it for care funding.

It can happen to any person at any time. Until you see a friend with Dementia you don't know how it effects them or the people who love them who are around them. No matter, we should always help them to find a cure for this terrible diease which effect so many people and as the population of the Country gets older this will effect all the more people.

It is irrational and unfair that unlike other long-term illnesses Altzheimer is treated and funded as a social rather than health care issue

My husband has suffered enough ,on top of his dementia he has had dreadful care ,he has Dols ,I am desperate to move him,the home have lied and professionals are making him stay their .they don't like me because l have. Spoken out ,taken photos of his injuries ,he has escaped twice it was not noticed for two hours that he had gone,police hospital,smashed face, I am. Told this is how care is l have photos of lots of injuries ,one which had a naked man in the back ground.They barred me ,and then gave six hours back they have shut me up and out.its making me so il nobody cares

Thank you for your comments – unfortunately we hear so many stories of poor dementia care experiences, which is why we are working hard to ensure our Fix Dementia Care campaign is heard loud and clear by the Government. We are currently working on getting as many signatures as possible for a letter to the next Prime Minister, asking him to make fixing dementia care a priority. Please contact our helpline on 0300 222 1122 for any advice or emotional support you might need.

My husband has alzheimers thankfully his nursing home is excellent. But the costs are very high. All our money will be used, why is,not dementia on the same footing as other long term illnesses.

The current position is scandalous. Care for dementia sufferers cannot be abrogated. Care needs are demanding and to present partners of sufferers with what appears to be a binary choice between self help and an inadequate Care system cannot be morally right. Resources have to be found to overhaul the care offered and more public money allocated to Social Care.

My husband has Lewey Bodies Dementia. We have both worked all our working lives, paid full tax contributions - we have both paid into a Health System - and were lucky never to be hospitalised. I have now waited 6 weeks for emergancy rest bite ! Please, WAKE UP politicians !

I lost 2 of my friends because of Dementia, and I lost my aunt to it 3 year before she died. Few of her family grieved at the time of her death, because we'd grieved for her loss already.

Dementia is a terrible disease, that ruins everyones lives.

Both my mum and dad had vascular dementia, and I've fought and lobbied for adequate care for them for years. It's exhausting. I've met good people along the way, but on the whole, it's been a very upsetting journey. Financials aside for a moment, the lack of understanding of issues surrounding dementia in allied health professionals and carers made the journey harder than it needed to be.