Usha and Sharad

Nimisha's story: 'The care system hasn't helped us, it has made things more distressing'

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

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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22 comments

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It 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.

I 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.

I 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

We'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

Please 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

Thanks 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

I completely understand and empathise with your story.. until you have a loved one with Dementia you have no idea how little support is out there. It’s a total shock, disbelief! Dementia websites are everywhere but when it comes down to it there is not the help that is required for families and sufferers.. Your on your own to try and work things out and its tough, very tough.. I dread to think what happens to people with no family to fight for them.

It's horrendous, but your story, and so many others ring so true. My wife died from early onset Alzheimer's back in 2012, and frankly little, if anything, has changed in that time. So many words are spoken by our politicians but they just end up being no more than platitudes. All I can say is be strong and just do as much as you can for your father. Sorry I can't be more positive at such a tough time and don't think I'm being heartless, but nothing lasts forever. Take care and for what it's worth, solidarity.

We are in the same position. My Dad aged 92 has been looked after by my mother aged 88 until earlier this month when she was diagnosed with a UTI.
We had to put Dad into emergency care while Mum has been recovering.
If we allow Dad to come back home it is killing Mum looking after him.
They have a large old terraced house which Mum didn’t want to leave in case it upset Dad with his Dementia.
It is 7 years since he was diagnosed and for the past 3 years has become increasingly difficult. My Mums whole life has been spent caring for Dad.
Lately he didn’t even want to go out and spent most of his time sleeping in his chair.
My Dad is the old school and my Mum has always done everything for him. He won’t allow any of us do anything for him as Mum has always been there.
He can’t understand why he’s been put in this awful place and it must be very difficult for the staff to manage him as he refuses all offers of help, food, care etc.
As the house is theirs we are going to have to sell it to pay for his and Mums future care.
Trying to find suitable accommodation for them has been a complete nightmare. Social Services are not interested as they will be private payers!
My Mum has saved up some money for my Dad to be taken care of but we need to fund for both of them now.
This will mean selling their house which they worked so hard all their lives to pay for.
As someone else has commented - if he had cancer it would be a different story.
When is the government going to wake up to the plight of all these people with Dementia?
It is known as the long goodbye but Dad hasn’t been himself for the past 3 years.
The loving Dad we all know is still in there somewhere but it is getting more and more difficult to see.

The social care system in this country is a disgrace quite frankly. My families experience so far of social services and our local council is awful, they don't know have a clue and palm you off with incorrect information and inexperienced providers to boot and don't hesitate to take your money and it's only when you realise yourself something's not right and start asking questions and threatening to complain followed by the responses you get back do you then realise the current system is a shambles because your just left high and dry. Local gps aren't much better either there is a clear impression that if you have dementia it doesn't matter if you could have anything else wrong as well because their not interested in treating someone with dementia for other conditions!!

I agree totally with all comments made on site , dementia patients /family , young and old can only get help support and empathy between the hrs 9-5 Monday to Friday . And then to be told this is not a drop in centre at our local adult mental heath centre when I refused to leave until I seen some one for help for my 84yr old mother who has Alzheimer’s who was completely uncontrollable following my father being admitted to hospital following a stroke . Unbelievable.

I agree with everyone. My mother has Alzheimer’s/Vascular Dementia, Social Services have been useless and I am still struggling. I made a formal complaint, told 25 days for reply, then told 40 days for a reply, no one replied. I haven’t heard from the useless social worker since beginning of April.

I agree with other carers, like most of us I just try and get through each day . When you ask for help they make me feel like I'm begging. Both myself and hubby have worked all our lives,he started dementia signs at 57 . I had to give up work to take care of him.When I was I'll I asked for some help just of a night to get him into bed .6 weeks on and numerous phone calls still waiting for assessment!! Yet they have the nerve to say support is out there. But you try getting it!!!

I have been fighting for additional support for my mother since February 2019. It has been an uphill battle, very frustrating and agonizing at the same time. Two case workers have come to my home for assessment and both of them were very hopeful that my mother would receive the care that she so desperately needs and it's now August and we haven't received any notification about her approval for support. It's really mind recking.

I am caring for my wife who has Alzheimer's and was Diagnosed 4 years ago. We have no family so I don't have any help as regards to caring for her. I had a visit from Social Services last November since then nothing. The lady that came to see us was very nice and made a lot of notes but when the visit was nearing the end of the consultation she got round to the money situation and she advised that I would get no help and that I would have finance her care. She advised that she would organise a financial assessment, since then nothing. I am having to pay for private care just to be able to get out and do the shopping but I don't really get any time to myself. The care system in this country is a disgrace and the so called green paper on care has once again been kicked into the long grass by this none caring government. The social services in this country needs a good shake up and much more money needs putting into the care system and give Alzheimer's care a level playing field but I won't hold my breath about that.

Firstly my mum was diagnosed and dad and I cared for her. Then 5 years later my father was diagnosed. I’m an only child to older parents with no family. I had very a good job in the city but ended up giving up everything to assist and looking after them the best I could with some help from social services. It all but killed me. Eventually, it all got to much as both my parents spiralled downward both mentally, physically and emotionally. The decision was made to put them both in to care. This resulted in them being placed in separate homes miles apart. It was heart breaking. My father passed away 4 years after he was diagnosed and mum ‘bless her’ is in a home and has actually bounced back. She is being well looked after but at a huge financial and emotional cost. ‘Me’ I’ll never be the same and my emotional scars will stay with me forever. It angers me that other terminal illnesses the patients get everything for free and gives support but those that fall into a ‘mental illness’ as it’s been referred to get nothing.

As carers we all seem to be in the same boat.Left in Limbo after your loved one has been diagnosed with this dreadful disease.Worrying about costs and the thought of selling a house to fund the care costs.
No one should be subjected to the anxiety this causes which along with the work involved results in carers themselves becoming ill.
There is a lack of communication between various departments of the NHS when someone is diagnosed with dementia because carers should be advised from the very beginning about the benefits you are entitled to and not left to find out for yourselves.
The specialist should put in place a home training program for carers and advise you of benefits you can receive like attendance allowance,council tax discounts on rates and VAT exemption on various things because looking after someone with this disease is heartbreaking and very very stressful
without the worry of negotiating the path for benefits,the costs of respite,help and selling of homes etc.
The criteria to qualify for Continuing Health Care is in my opinion set so you fail at the first test as happened in my case.
I am 76yrs old and I care for my lovely wife who after five tests over a number of years was diagnosed 4yrs ago.Why it took so long I will never know.
As the disease progressed she has lost her vocabulary and mobility and besides having to look after the house and other things I now have to wash,dress,feed her and look after all toiletry needs.No help unless I pay for so called professional carers to come in for half an hour each morning and evening.
The costs were very expensive with one company quoting £275 per week.
I find social services to be of no benefit and they have closed the case as they are not giving a service to my wife.
The government have done nothing to alleviate the problems we all face and although I do believe helping poor countries with aid it is my opinion nearly 14 billion pounds each year is excessive especially when they don't know exactly where the money will end up.
A figure of 10 billion pounds to the EU every year,for what.
My family asked which home they would like me to be placed if it came to it and I said put me in the House of Lords which is the best care home in the country.
God Bless You All.

It is very unfortunate that the issues and problems suffered by Nimisha and her family are all too common. In the two and half years since my wife's diagnosis as early onset, I have fought a continuing war with the very bodies that purport to be there to help. The occasional battle has been won, or at least resulted in a honourable draw. Most of these have been with the NHS - an oxymoron if there ever was. The system of referrals to 'specialists' needs so much to be desired. There is such a diversity in efficiency, and more importantly in empathy. To be fair to this monolithic organisation, I have found that the frontline staff are generally excellent, but there would appear to be a direct correlation in that the more senior the staff the more problems encountered. I could write a book about CGC's and CHC, and it would not be a drama or even a thriller. It would be filed under tragedy. It has always been a perception that health care is a right. CHC is the opposite, and certainly from my experience everything is done to discover ways of saying no. I gave up my employment in my fifties to full-time care for my wife, something she must have 24/7. However from my experience in this ordeal, and that is what it is, the younger, fitter and more affluent the carer the less chance of help.

Does anyone on her know anything about 117 funding?

Hi Marian,
You may be referring to support provided under the Mental Health Act1983 section 117.
We have a downloadable factsheet that covers section 117: https://www.alzheimers.org.uk/media/8206 Alternatively, read how the Mental Health Act 1983 is a law that is designed to protect the rights of people who are assessed as having a 'mental disorder', including dementia, within these pages: https://www.alzheimers.org.uk/get-support/legal-and-financial/mental-he…
There's also a thread on Dementia Talking Point - our online community - that is focused on section 117:https://forum.alzheimers.org.uk/threads/section-117-funding.17644/
We hope this helps.
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Alzheimer's Society blog team

My dad was diagnosed with Alzheimer's in June 2017. We as a family but especially my sister have had to fight for every bit of support. Social worker is useless. He sent a personal care company who did not have any experience of dealing with dementia. The memory clinic who diagnosed my dad have been very very poor at providing support and as for the GP dont get me started. She seems to have the attitude that as my dad has dementia he's not worth bothering with. There is all the publicity about dementia services but in fact it's just hype. We are trying everything we can to help my dad and my mum but in the area where my parents live the 'professionals' just don't cut it.

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