Article
Memory clinics are just the beginning
The national dementia strategy contains some promising ideas, but the substance of Alan Johnson's plans remains to be seen
The launch of the delayed national dementia strategy by the health secretary, Alan Johnson, is a move that can only be applauded by families of sufferers and campaigners alike. Establishing memory clinics in every town, the cornerstone of Johnson's plans, is an excellent idea. Every hospital in England will now also get a senior dementia specialist. The proposals are designed to help improve the diagnosis and treatment of dementia and Johnson even wants to tackle the stigma associated with the illness.
However, the first question is whether these clinics will be adequately funded and if this strategy will form part of a comprehensive approach to treating the disease. Will restrictions on the access to drugs, and the problems of self-funding care be properly addressed? Given all the unresolved issues, it is unsurprising that the reaction to the launch of the dementia strategy is muted. The substance of Alan Johnson's plans remains to be seen.
It is about time that the improved support for carers, as promised by Johnson, was delivered. According to the Alzheimer's Society there are 6 million carers in the UK looking after sick and disabled people. Hundreds of thousands of those are caring for dementia patients, and they save the government an estimated £6bn a year.
Many families of dementia patients still receive no support at all from either the NHS or social services. These self-funders are forced to pay for their care themselves, and often have to give up their jobs to look after their relatives. The government must be clear if it is saying we should forget about the-cradle-to-the-grave treatment, some people need to pay.
Johnson should therefore start by looking at the central question of who pays for the costs of care. Should it be the NHS, social services or the families of people who are ill? Many councils exercise their powers to force people to sell their houses to pay for their dementia care. There is no requirement for terminal cancer patients to sell their home, or even to pay for their own treatment, so why do the families of dementia patients need to?
For those thousands of people with modest pensions and savings who are made to sell their homes, this can often cause serious financial hardship. It is difficult to see any justification for making one group of people pay, and not others – this is an unhealthy divisive system.
Another key question is when will the government overturn the decision by Nice (the National Institute for Clinical Excellence) to restrict access to dementia drugs on the NHS? These drugs can slow down the onset of the illness for some dementia patients in the early and moderate stages of the disease. The Alzheimer's Society believes that the calculations made by Nice in relation to the cost effectiveness of the medication are "fundamentally flawed".
The health secretary has said that efforts will be made to end the stigma of having this terminal brain disease, and that is a positive development, but even putting aside the question of how the government intends to do it, there is still a long way to go. Only last week, Jonathan Ross suggested his co-presenter should have sex with an 86-year-old Alzheimer sufferer, but this time he was not suspended – fair game you might say.
A lot of work needs to be done to bring this disease on a par with other terminal conditions affecting millions of Britons, such as heart disease and cancer. Cancer research receives eight times more funding than dementia research, while the Alzheimer's Society estimates that dementia costs the UK more than heart disease, stroke, and cancer combined.
Rebecca Wood of the Alzheimer's Research Trust, referred to the new national strategy as a "first step." But she added "it is astonishing that dementia research is not a fundamental component of this strategy, and disappointing that the review of anti-psychotic drugs has been delayed yet again. It is not clear if sufficient funds will be made available to fulfil what is included in the strategy."
This is just the start of dealing with the growing dementia crisis. Up until now, treatment in Britain has been labelled "a national scandal" by Neil Hunt, chief executive of the Alzheimer's Society. Dementia care has got a long way to go, and ultimately success depends on the bottom line – will the government spend enough money on this national strategy?
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User Comments
Gareth100
3 February 2009 12:57PM
Until there is a therapy that can halt the development of Alzheimer's (pretty unlikely at the moment) these initiatives are merely window dressing. The cost of caring for the expected large numbers of cases in the future will exhaust the resources of the NHS and for no purpose.
freespeechoneeach
3 February 2009 12:57PM
A dementia strategy which omits action to reduce alcoholism is clearly flawed.
TMAP
3 February 2009 12:58PM
Ironically, the success that the McNanny state now enjoys in keeping people alive by scaring them away from life's simple pleasures such as cream cakes, cow pies, booze, fags and rampant sex is causing them to spend their ever-lengthening declining and drooling years unable to recall just what they are missing.
dementia costs the UK more
It sure does. My kids have strict instructions to save their inheritance and shoot me should I ever start spouting demented nonsense such as: "British Jobs for British Workers", "No more boom and bust", "The best placed economy to weather the downturn"
OneTooMany
3 February 2009 12:59PM
I would like to hear from somebody with medical qualifications as to how, even with a clinic in every town, it is possible to differentiate between senior moment forgetfulness and the onset of dementia?
Smiffy55
3 February 2009 12:59PM
It's excellent news that the government is developing a dementia strategy. It's long overdue but that doesn't make it any less welcome. As a member of a family that has coped with it in previous generations as well as currently, everything outlined in this article is true, however, one of the biggest problems we have experienced (in a prosperous area with an admired Memory Clinic) has been the lack of awareness or understanding by much of the medical profession. This is partly because dementia can only finally be diagnosed post mortem and most doctors seem to really struggle if they haven't got a definite diagnosis of something. They spend a lot of time disproving all the other things that it could be but never reach a conclusion that the problem is dementia. This is negative for the families and patient concerned because we survive with false hopes that there may after all be something curable affecting our loved one and meantime have to make major decisions for or with them about selling their houses, caring for them in their own home or in a care home, etc. Until there is a definite diagnosis most professionals seem reluctant to confirm dementia but this leaves families making decisions for themselves based on previous experience and the internet.
In other professions and industries we pay the experts more because of their knowledge and experience and assume that they can use this to give us an informed opinion. With dementia it seems that the experts fight shy of committing themselves which throws the problem onto the families.
HeartLess
3 February 2009 1:01PM
freespeechoneeach
A dementia strategy which omits action to reduce alcoholism is clearly flawed.
Why? Do you think there is a link between dementia and alcoholism and if so what is your evidence? My mother suffers from dementia and she hardy drank at all, one bottle of wine a year at Christmas.
guardianreeda
3 February 2009 1:15PM
Why would the government deliver on a 'dementia strategy' when it hasn't delivered on the other things it promised to do?
-ethical foreign policy?
-no more boom and bust?
-EU referendum?
-improved education?
-free healthcare?
-an end to sleaze?
This announcement is just a desperate attempt to divert attention from the consequences of their time in power.
TPTFC
3 February 2009 1:49PM
Anyone who has had a relative suffer from any form of dementia or "failing memory" will be acutely aware of the sense of shock you feel when the person you once knew is no longer "at home", and some form of alien presence has apparently taken up residence. It can be the ultimate faith-shaker for those that still have any left.
One elderly relative recently made this comment when this subject was cautiously raised:
"Hmmm... a failing memory could be a blessing in disguise. [pregnant pause] Gordon who..?"
Twinkle in eye: all marbles present and correct.
hailesands
3 February 2009 1:50PM
I recently arranged, with my GP, for my 87-year-old mother to be given the Mini Mental State Examination (MMSE) test. This is the standard test used to determine whether of not a patient has dementia.
Here it is: MMSE.
Am I the only one who finds this test too easy - way too easy - to sort the sheep from the goats? I assume that the test has been properly standardised, etc, but it still seems inadequate to me.
My mother passed the test with flying colours - but she still exhibits all the signs of early dementia, and we are both feeling the strain. Remember: no diagnosis, no treatment. What do I do now? Lobby to have the test changed?
Fat chance.
solarplexus
3 February 2009 2:04PM
Alan Johnson's announcement is about as helpful as if he had proposed giving everyone a thermometer to check their temperature as a massive advance in the treatment of a cold.
Of course, most people already own a thermometer, just as most districts already have memory clinics. GPs know that if an elderly person develops a failing memory, after a quick screen for acute metabolic problems, dementia is a likely cause, and a head-scan will often confirm this. That said, with the present dumbing down of the NHS, should the GP correctly refer to a memory clinic, this no longer guarantees an assessment by a specialist doctor in memory function, you might equally end up with a counsellor or community nurse - with no medical qualifications - seizing at non-clinical straws.
And even after this NuLab refined lucky dip, if dementia is diagnosed, what can you do next? People with advanced dementia need care, both physical and emotional. Their carers need support: physical, emotional and financial. These practical things - from wiping bottoms to supervising, supporting, feeding and comforting don't come cheap, if they are available at all. Neither do adaptations to homes, cars, stairs etc. If you are over 65 (as most dementia sufferers are), you cannot get disability living allowance (although people with dyslexia can and do claim this and thus get car loans paid off at the state's expense). Plus dementia sufferers are likely to be physically frail also. In the absence of a local supportive family (even less likely in these days that Mandelson expects us to move around Europe for jobs), this government does bugger all to help sufferers and carers of this condition, apart from provide soulless and costly institutions where bored carers on minimum wages patronise and ignore them.
People with dementia might also benefit from specific anti-alzheimers medication - but alas, NuLab's NICE have restricted it so that those with "early dementia" or "late dementia" do not qualify - leaving precious few who do, for a brief snapshot in time.
Furthermore, it was highly disengenuous for ex postman (note, not a doctor), Alan Johnson to declare at the weekend that dementia patients can instead be helped by things such as controlling their cholesterol - we should all remember that when granny's shat the bed again and is half-dressed, unkempt, falling over and crying in confusion that for heaven's sake, don't let her enjoy a fried egg for breakfast - after all, she's got dementia!
speedkermit
3 February 2009 2:26PM
Locally-appointed 'Dementia Tsars'... we're saved.
Or maybe we could save ourselves a few £100K a year posts and spend it on care? The plan is admirable but it smacks of yet another opportunity wastefully micromanage a public service until it shudders to a cumbersome halt.
canuckkid
3 February 2009 2:41PM
Unfortunately, I am suspicious of EVERYTHING this government ever does as I believe that there will always a be an angle somewhere.
Let us not forget that it was not that many months ago that this same government refused to pay for most Alzheimer 's medication and now we are going to have memory clinics everywhere?
I have a personal interest in this for not only did my father have vascular dementia but both my aunts had/have the condition as well. However, as welcome as the debate and educating role this new venture may bring, I am concerned about various factors as indicated in the following Telegraph article :
Yes, I can see it now- a whole workforce monitored for signs of dementia by their boss who is not trained to do so( unless they are all nurses or have degrees in gerontology etc). I also take exception to a line in the article that states that :
"people do not realise that some dementia may be preventable by leading a healthy lifestyle"
Ahh- there it is- that old angle again.
My father had many trophies for his running and was a life member of the YMCA but he still ended up with dementia.
Be warned : Labour will use everything against you if you allow it. You don't disagree with us, you just have dementia! ( which all health care practioners will be able to see once they put your details on the NHS spine).
selfishjean
3 February 2009 5:01PM
This thread, by Guardian-readers who would presumably bridle at any other form of stupid prejudice, is all too illustrative of the work to be done on rehabilitating Alzheimers no less than its victims. Serves 'em right for boozing all their lives! (freespeechoneeach). If they'd had enough sex instead of being miserable old spoilsports they wouldn't have lived too long in the first place! (TMAP). It's only forgetting what day of the week it is, isn't it, and I've been doing that for, ooh, can't remember how long and no-one's ever paid ME a penny for it! (One TooMany). Gas the useless encumbrances for contaminating the human stock! (Clearly where Gareth100's going). On any other subject comments like these would all have been removed. They should be.
Mercifully my mother lives in a town with an exemplary Memory Service, the test they gave her sounded good to me (looking over her shoulder I had to give some questions a little thought myself), and the care provided included helpful suggestions on how the hell we were to pay for it all. My brother went part time at work to spend five hours or more with her every day; now she's in a care home he's still on part time, being tied to the academic year, which in the current economic climate puts him at extraordinary risk until September at least. The home is costing us about £800 a week of her pension and the interest on her savings, with no other suppport. She hates being incarcerated, and often cries when visitors arrive and when they leave. The local Memory Service agreed with us that she wasn't strictly speaking care-home material yet, but is so physically active as to pose a danger to herself in ordinary sheltered housing: most of her contemporaries, when anxious to go home to their (long-dead) mothers, can't move from their chairs, but she would get up, pack a bag with a change of underwear and the oldest family photo albums, and set out to walk to her mother's old house. She'd get there, too - a couple of miles. Most days, and many nights. After the police had brought her home in the small hours several times in a month my brother realised that the five hours he spent with her a day were no guarentee of her safety during the hours when he had to be somewhere else, and gave up. So she's now in expensive full-time care because she isn't ill enough for a slightly cheaper kind, and we're having to watch her being driven literally mad[der] by having to live surrounded by more advanced cases of dementia, some of whom can't talk to her at all.
Why do we bother, Gareth100? Because she's a human being, and still far more interesting company -quite a high proportion of the eighty-odd years of her - than a 30-week-old foetus. I wonder how many anti-abortionists think old people unworthy of their attention or taxes?
Next joke?
optimist99
3 February 2009 6:01PM
"For those thousands of people with modest pensions and savings who are made to sell their homes, this can often cause serious financial hardship. It is difficult to see any justification for making one group of people pay, and not others – this is an unhealthy divisive system."
Not at all.
Long term care for the aged - with or without dementia, costs immense sums. Why should the tax-payer pay huge amounts just so those needing residential care and owning their own homes can bequeath them to their children?
These children themselves are usually well into middle age and quite capable of looking after themselves.
One of my aunts is in long term care and the cost has exhausted the proceeds of the sale of her house. Now the taxpayer pays - fair enough.
Wordsthatsing
3 February 2009 8:30PM
Apologies for linking to an article at the Daily Mail.... I'd never normally do such a thing but it's a fantastic article by Terry Pratchett about Alzheimer's... both funny and profoundly moving.
Among other things it response to your questions about the MMSE test, Hailesands.
freespeechoneeach
4 February 2009 8:17AM
Dear HeartLess,
Thanks for your interest :-)
Not all people with lung/ mouth/ throat cancer have it because they smoke cigarettes, either.
Talking about dementia without mentioning alcohol is exactly like talking about cancer without mentioning smoking.
http://en.wikipedia.org/wiki/Alcohol_dementia
As a country, we're an alcoholic. And nothing about alcohol, or about the harms it manifestly causes, is being honestly reported or rationally discussed.
dementiaaware
4 February 2009 12:25PM
As an excarer for my mother, I have been campaigning for alzheimer sufferers to be noticed as individual people. The one thing that really worries me is that the new strategy does not take much notice of pain in the more advanced stages of dementia. Just because the person can no longer communicate does not mean the pain has gone away. We all know what dementia is but each and every sufferer is an individual and have their own levels of pain tolerance. It is easy to just drug a person but what is really needed is people trained to recognise the signs of distress caused by pain. The people in the position to dictate what goes on for dementia care, with all due respect do not know what they are talking about unless they have had first hand dealings with someone with dementia. You cannot possibly treat every one the same, as the character of each person is very different and that part of the person never alters, in fact it probably gets more enhanced, as all their inhibitions go. If the Government started to rethink their policies on payments given to people for heating allowance when they are in continuing care they could save an awful lot of money which could be used in the research of alzheimers. I did enquire why this was with the DWP only to be told it was the law, but no-one had ever asked about this before. So please Gordon Brown do rethink your policies.
TPTFC
3 February 2009 12:49PM
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