/ Health, Home & Energy

Dementia care: is it a postcode lottery?

Is the quality of dementia care in the UK sufficient enough to support people with dementia?

Every single week it seems we get a new story about dementia care provision.

It might be the challenge we face with a growing elderly population, or the reality for many people today in finding decent health care for a loved one.

Last week the Government published an atlas which set out for the first time the quality of dementia care in England. The report makes worrying reading for many patients and carers.

Dementia care performance

This atlas shows the quality of services for patients suffering from dementia and highlights where local authorities fail to meet  NHS guidelines.

One of the key guidelines is that every patient should have a face-to-face meeting – at least once a year – to have their care plan reviewed. The map shows that in many areas this is not being delivered.

There are large contrasts in the performance of care across the country notably with these face-to-face meetings. For example, in North East Lincolnshire over 85% of patients are seen once a year, while in Somerset, fewer than half of patients get that vital meeting.

Support and advice

More and more we’ll need to use such information to help us make tough or even heart-breaking decisions in life. But data like this also helps us to hold local authorities to account for the way they look after elderly people.

If you’re looking for help for your relative or friend, Which? Elderly Care gives you guidance about housing options, day-to-day living arrangements and how to pay for care. In particular, the site has information about Dementia and other memory problems. If you are looking for local support for people living with dementia, you can find this in the Care services directory.

Over to you

Have you had experience with the care system, in particular with dementia care? Do you think the provision of care is sufficient enough?

Comments
Profile photo of duncan lucas
Member

To me its all about the governments “care in the community” legislation which is all about saving money and hospital beds because of cut backs . The onus is now put on relatives of the person suffering, has anybody any conception of the amount of personal attention needed when looking after somebody , year in -year out , in my case not for dementia of my wife but a major stroke from which she has never recovered , no holidays , no relief just 24/7 care by myself . Well that applies to those looking after dementia sufferers and what help do they get ? For my pains ZERO financial help , yet I am on a low fixed income but I am saving the government £10000,s , yet when I look at the tax dodgers leading a great life and BB which is still dodging its responsibilities it makes me very angry . My cousin , a college lecturer contracted dementia while still relatively young , he never married and his parents had died , his sister lived 50 miles away so for 8 years he spent time in hospital , not a general hospital but a psychiatric hospital , he died last year and he was about 10 years younger than me . Would he have lived any longer ” in the community ” if he had a relative looking after him ? thats debatable as he died of the “standard ” type of death when an absolute cause can not be determined . When told about it -I cried , as I live 100 miles away and could not visit him as I could not leave my wife . What I want this government to do is recognise people like me all over the British Isles who are doing what amounts to a public service , because all that happens to me is that I am made poorer and poorer by the government in removal of benefits .

Member
Professional nanny says:
28 August 2016

I looked after my mother and was told I saved the country tens of thousands in hospital costs. As a result, these years were cut from my State Pension which was already reduced as I spent 28 years looking after family under 16, nore than the maximum allowed. If we care, it seems we are trated as ‘mugs’, I could have been at work earning a good pension but I do not regret my decision even if managing is difficult. My consciebnce is clear.

Profile photo of duncan lucas
Member

Professional nanny – as a certain long dead Irish comedian/ talk show host said at the end of his TV shows –may God be with you.

Profile photo of John Ward
Member

I am afraid I must correct you there Duncan. Aware that not everybody recognised the same god, Dave Allen always said “May your god go with you” – a subtle but important distinction.

Profile photo of duncan lucas
Member

I was waiting on that John , so a “Gold star ” to you . I changed it to express a point that even though she might not have any beliefs , that doesnt matter , because what she did was more “Christian” than many so called Christians who walk into church/chapel to make themselves “look good ” in the eyes of society while here,s a woman that actually does the will of God ,even if she has no religion . Its not down to religion in life its down Love and Charity (giving of themselves not a few ££ to a “charity”) that is the ultimate sacrifice of a human being . While heaven might not be what the bible says in the end you are still judged by someone better than yourself. Not PC but there you are.

Member
dieseltaylor says:
26 August 2016

I am astonished DL that you get no carer support payments or whatever the current term is!

The links provided in the atlas to the organisations , charities etc is useful.

Profile photo of malcolm r
Member

There is financial support automatically available for carers who meet certain financial conditions, as I understand it. I am a believer in family looking after family wherever possible. I think it is an integral part, and responsibility, of family life, whether children, adults or the elderly. It is essentially care based on love – the wish to help those who you are close to and who have been your life. However I do feel for those whose life is tied to this; not as an outsider either. I do not think we should use the state, and anonymous institutions, to take over a role that family should fulfill – unless there is no alternative. I understand completely what duncan says, and feels; and carers should get assistance.

Member
Professional nanny says:
28 August 2016

My mother in law was cared for by her husband until he was 94 and had a fall which left him crippled and in care. He was unable to save himself on account of a lost limb in WWII. As a result they both ended up in care and the house was sold as the care package cost more than his four pensions!
We have won a court case which should have resulted in a payment of thousands of pounds for her dementia care but are informed that the chances of this being paid are almost nil as NHS would have to pay.
We argue that a WWII veteran with pensions for two limbs and an occupational and state pension should be able to afford his care without selling up the home to pay fopr his and his wife’s care.
Surely, something is wrong with Britain’s care provision to let this happen. He is angry that his children and grandchildren will inherit nothing and no wonder! No point in replying; this is just for information as it seems so heartless.

Member
A Carer says:
28 August 2016

I agree with Duncan, the aid to those of us who care for family members is…. Appalling… at the very best
For the individual involved and for the carer who more often than not becomes ill due to the lack of support.
I have been taking care of my aunt now 99… her condition is not to severe, however she need 24/7 supervision day and night, her ability to do things changes all the time, as does her ability to understand many things .
While I agree family take a large role in caring for family members, it should also be remembered we and especially people like my aunt paid into the system from day one… a promise… no a guarantee/contract was made when setting up health care, that has now been broken, but the duty remains.
How it is today, social services treat the carers like scum!, forever implying family are the biggest abusers of those needing care, when in fact it is those provided by social services that are the most likely to abuse the ward, so many old people I know (not just suffers of dementia) have told me they stopped services provided by social services because of 1 type of abuse or another… and then blamed by social services for the breakdown (not being in, being rude or offensive to care staff etc… etc.. etc..) and care in the homes is as bad or worse, two family members I have lost…
my mother who’s lung capacity had reduced to such a degree that with help and using a wheel chair it would take around 10-15 minutes to get her out of her bed to the bathroom 4mtrs away, then a good 30 mins or more to toilet her then the time taken to return her to bed, all this on oxygen…
Social services ‘FORCED’ two individuals to come twice a day (10 am and 10 pm) to do the above, they were allotted 15 minutes to do this task (often doing it within 10 mins), I wasn’t allowed to complain, as social services had warned me , that if I interfered (spoke to or complained to those carers) they would remove my mother from my home!!! Not only that but while telling me “it was morally and socially indecent and unacceptable for me to toilet, bathe, dress my own mother”!!! but expected me to do just that in the 12 hrs between visits!!!
The same people when I first took over the care of my aunt (who was in hospital at the time after a fall, she had a bad water infection and had fallen in her own home) were about to condemn her to a home, without contacting us!!! “sorry Mr… but we didn’t know she had family’ what? Then how come you phoned me to inform me she had fallen and had been admitted to hospital?
Hospital told me that they would have to keep her in hospital for a full week to get on top of her water infection, great I told them, that will allow me time to get her home in order (many old people are proud and don’t let even family to help when they need it)…. 10amthe following day, I received a call from the hospital “we needed the bed, your aunt is in reception waiting for you to collect her” I couldn’t get there until 1 pm, I found her with a bunch of strangers, no one on reception, she was dressed only in her nighty… she didn’t know where she was and thought that the people round her were my friends!!!! The hospital delighted responsibility???
I got social services involved, my aunt another big mistake, so we dropped them, again they actively worked against both my aunt and I (the flats she lived in house 2 other old ladies who had also had trouble with social services) six month battle to get direct payments, then we moved to Liverpool and lost it all!!l “sorry we ‘will not’t pay DD to family members who live in the same house”, and things were even worse…. For both of us… services both where we moved from (chester) and Liverpool had been drastically cut back….
As a carer I get no help, I did get some limited help (strange how doctors and social services when offering something you either can’t afford or is not suitable due to the care you have to provide always write it down as…. “refused assistance/offer/etc.” …not due to circumstances or similar, just plain …. “REFUSED”… and when you don’t do as they ‘suggest’… its written down as…. “uncooperative” or “unreasonable”.
Let me give you some figures given to me several times by social services and other so called ‘professional’ bodies…. To provide a carer to come to the home (as with my mother) for every 15 minutes it was costing social services £45 per carer (who was then paid minimal wage)… so in my mothers case that was 2 carers (2 x £45 = £90) twice a day (£180 for q total of 30 minutes) seven days a week, that’s £1,260 a wk!!!.
But we the carers have to live in poverty… we in many cases to be able to care for the individual , have to claim benefits and often due to the stress of caring and trying to make ends meet the job entails, end up becoming ill and claiming more benefits…. Oh but you can claim carers allowance…. Okay heres how that works out for many of us… the good and then the bad.
The good:
you get your national ins stamp paid (or part of it), if your on benefit you cannot be forced to look for work as to claim the allowances, you have to provide a minimum of 35-6 hrs care throughout the ‘daylight’ hrs of the week… so the family member/individual/friend has £65+ taken off them and paid to you….
The Bad: as this is classed as ‘earning’s and the carer is on benefit, they get this £65+ deducted from their benefit, so my aunts income was reduced by £65+ a week, I was paid £62 a fortnight and my benefit went down by £82 a month, that means overall ‘we’ as a household became approximately £218 worse off a month…. I was told I have to claim this allowance because…
“ yes , we recognise you are her full time carer, yes we recognise the powers of attorneys you have… however for any government departments (council tax, rent, AA and DLA & social services etc)… “we don’t officially recognise you or anyone else as a carer until you claim the allowance”…???
So yes it is right for family to care for family who are ill. But it’s also right for the carers to have a fare deal and be allowed a fare wage without having to be on benefits… all our bills have shot up…. we change providers but our fuel bills exceed £1,500, our water bill is above £800 pa all due to my aunts needs, cleaning products, dietary need, other medical needs, transport etc. etc, makes every penny count, else one of us goes without to make ends meet… and any help I want (respite care) can’t be utilized as there is no money.
Yet there is abundant cash to pay private companies…. Back to the cost mentioned above… the care package for my mum was £1,260 pwk why not pay the carer a living wage rather than some private company to send some low paid with very basic training individual, thereby allowing us to live a reasonable life (bills paid, food on the table, able to afford new clothing without having to go without something else) afford to respite when needed (last was told 3 days/nights would cost me £250) etc….
1social services provided Carer for 15 mins twice a day equal £90 a day, that’s £630 per wk, that’s £37,760 pa…
Benefits cap is £25,000 a year…. Give us is as a living wage, rather than persecute us for doing the right thing…. Allow us an education rather than denying us one (carer are not permitted to take up any full-time education courses (online or other) reason… you can’t care full-time (35 hrs pwk) and study full time (many fulltime courses are as little as 16 hrs pwk, found some that were 8?!?) so we can’t train for the future….were looked down upon by employers in the same way as long term unemployed… yet we work the longest hours, are on the least pay and nil benefits… in fact possibly the only worse off people in our society are the homeless… and even they ‘officially’ aren’t homeless unless the have an addiction???

So don’t tell me or any other carer… there is financial support… when it’s rigged against both parties (care giver and receiver)

Profile photo of duncan lucas
Member

A CARER- straight from the heart and I defy anybody to criticise her , no lies here ,no half truths just absolute down to earth realism . One of my aunts was a social worker and she was very far from perfect , my wife hates them and for those disagreeing I can supply a long list of criminal acts committed. My wife is also down for “refusing care ” and yes the house would be theirs if she went into a care home . Britain -2016- heartless !