Dementia Support Line
Real stories
‘The care system hasn't helped us, it has made things more distressing’ - Nimisha's story
Nimisha and her family are trying to provide the best support they can for her dad, Sharad. However, their experience of the dementia care system has been a constant struggle. Here, Nimisha shares her experiences of navigating a broken system of care.
I don’t think dementia ever affects just one person. It affects everyone close to them too – their family, their friends. And my experience is that the care system hasn’t helped any of us. It’s actually made things more distressing – for my dad, Sharad, and for all of us who are trying to make dad’s life with Alzheimer’s as comfortable as possible.
We were warned about the fight we would face to get the support we need. But nothing prepared us for this reality.
We first began to notice dad was having problems with his memory in 2015. A memory test and a scan confirmed it was dementia.
My mum and I went on a dementia awareness course at that time, and we were told we would have to fight to get our voice heard and to get dad the right support. But nothing prepared us for how hard it would be.
We spoke to social services, and the third question they asked us was, ‘How much money do you have in your bank account?’ We were told if we had more than a certain amount, we wouldn’t get any support, and the tone was just so cold.
We were a family facing up to dementia for the first time. We needed compassion, empathy and guidance.
We were spoken to in a way that made us feel it was wrong to ask for support and information. It was like dialogue was being shut down, not opened up.
I spoke to social services again on the phone after that, and was told dad needed an assessment for his needs to be worked out. But then there was silence. No follow-up letter. No phone call. Nothing.
I called back to find out what was happening and was treated like I was an inconvenience. One person actually had the nerve to say to me, ‘What’s the emergency?’
It might not have felt like an emergency to them, but my dad needed help – and I needed support to get that help. But instead, the process just got more and more painful.
Nimisha desperately wants to get her Dad the support he needs.
At the moment my mum is my dad’s main carer, but we know that can’t last forever. We’re resigned to having to pay for his care privately.
I definitely feel there is discrimination against dementia in the healthcare system, compared with other conditions. It’s so hard to get support.
When I was young, dad was energetic and vivacious. He was always ready to swoop in with a huge cuddle, providing us with endless love, support and sound advice, and encouraging us to be the best versions of ourselves.
All I want is to help him get the support he needs now to be the best version of himself, but it’s such a painful and difficult process.
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Peter Garside
saysThanks for your story. When my Wife had Alzheimer's Disease diagnosed we were in a similar situation. However on researching the care services of our countries NHS I discovered "Continuing Healthcare" was possible to claim & no financial Assessment was required. However its very difficult to obtain & an Assessment is made via the "Complex Case" unit of the local Commissioning Group.
Winning a "Personal Budget" to finance the total costs of providing care in your own home is dependant on the overall situation & is not specific to the diagnosis of Alzheimer's or any other health condition.
Following the death of my Wife Pauline in 2016 I launched a website to help other people to get the valuable help we achieved. Its on
https://continuinghealthcare.wordpress.com/
You may need to get professional help & all the contact data is on the website or via the Alzheimer's Society website if you research under this heading.
The NHS is unfortunately failing to look after people in your situation. You need therefore to be well prepared & ready to fight for your rights. Best wishes. Peter Garside
Thanks for getting in touch, Peter - we hope you're keeping well.
A diagnosis of Alzheimer’s or indeed any type of dementia does not carry automatic eligibility for CHC, as much as we would like it to. Eligibility for CHC funding is never ’condition specific’ and relies upon identifying the person’s needs in line with the criteria laid out by the Department of Health.
Here at Alzheimer’s Society, we suggest that the best way for people to access NHS Continuing healthcare (CHC) if they think they are eligible or they represent someone who they think is eligible, is to inform themselves fully of the CHC criteria before the process starts.
For anyone looking for more information, our page ‘Tips on preparing your case for NHS continuing healthcare’ should prove useful (https://www.alzheimers.org.uk/get-support/help-dementia-care/nhs-contin…) - we also have a free downloadable booklet with further information (https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/whe…).
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Alzheimer's Society blog team
Shirley
saysPlease don’t think you are unusual. Every day becomes a battle & you must remember you are the only ones who know how bad things are & how distressing it is to have every door slammed in your faces. At least you are a family & can take a break for awhile. I knew my husband had dementia & Alzheimer’s from being 60 yrs but was refused a diagnosis yr after yr. Doctors were ridiculous & refused medication. Eventually he was sectioned in my absence & hell broke out. He wasn’t washed, fed or cared for. They just wanted to control him to make their jobs easier. I too was refused funding & any form of help. I couldn’t cope with the years of daily stress & battles so l got cancer twice & still had to manage alone. You must fight on no matter what happens- no one else will. You are now the specialist. Be strong, don’t be beaten & support each other. Big hug to you all
Keith Froggatt
saysWe've worked hard all our lives never once having had state aid until we retired. Now our savings are going to disappear to give my wife the care she needs now that I can't look after her anymore.
That leaves me without any savings for my enjoyment in my retirement years . This can't be fair or just when someone who has never worked and doesn't own any assets can get the care they need for free.
It's time the government picked up the tab for dementia care and took the stress out of the carers hands
Johanna Cawood
saysI am from South Africa and yes I feel there should be more awareness regarding dementia etc. And that the health system should be allowing assistance and help to those diagnosed with Dementia and Alzheimer's disease.
I mean if you have been a taxpayer all your life you should at least be assisted with dignity. It is after all a terminal disease. Worse than cancer as this disease cannot go into remission
Sue Hunt
saysI understand how Nimisha & her family feel about the treatment they are receiving from Social Services or should I say nontreatment. SS should change their name as they do not give any services. They make you feel that you are nusiance and bother, they just go through the motions when they visit and then just leave you in limbo. I can't have any respite because my husband still goes walking every day therefore they can't take his liberty away from him. What about my liberty, that's been taken away. I rely on good neighbours for help.
Dina Michaelides
saysIt was the same for me when my beloved mother was diagnosed with alzheimers. she owned the house whe was living in and social services told me that she needed to sell the property and pay for her care privately. However I was a strong minded woman not only looking after my mum but also my husband who was paralysed from a stroke. I looked after them both, and paid somebody to come and assist me on some difficult days and as a result my mother's house was not sold but inherited by her close family.
My mum worked for over 40 years paying all her tax and other dues but it seems that those who saved and scrimped do not get much help. Something needs to be done to sort this unfair situation.
Dave
saysSuch a sad time for all. My parents have worked all their lives to give my brother and I a happy upbringing. Now, my dad is 66 and just retired and my mum is 65 and has recently been diagnosed with dementia after we've been fighting for help for 3 years after she had a number of mini strokes which left her registered blind and struggling. She even had to have interviews and go to court to prove she was unfit to work. It astounds me that other benefits are given out freely to others less deserving, many of whom have never worked. I know that does not mean everyone doesn't deserve what they are entitled to and I don't want to ring fence or stereotype but I have become a little cynical in the last 3 years after everything. Like you have said the social services ask is it an emergency and sadly a lot of the time it is, its like a massive build up of pressure. My mum is sadly now becoming verbally abusive and physically threatening. Full time care is inevitable but so expensive and the help that they are receiving is minimal. I have just moved into the next street to be closer but work full time shifts and my brother lives 200 miles away. Our only other living relative anywhere near us is my 74 year old Uncle who cannot assist in much. It beggars belief how people with no one are supposed to cope as you have to fight for anything and everything.