Thursday 5 February 2009

National Dementia Strategy

Dementia care in the NHS is pretty good.

As Dr Crippen states here, obstacles to good dementia care are not that dementia is poorly diagnosed. Nurses giving information, advice and support to carers, doctors offering information and medical and interventions, this all ticks along pretty well in most areas.

I've issues with "memory clinics" which often aren't (and have evolved solely in to diagnosis and monitoring clinics) but we've had them for over a decade now, they're not new, they undertake a useful role, they need adequate resourcing for the demand (of course) but their role is necessarily narrow. They're a clinic. Only part of dementia care can be undertaken within clinics. But memory clinics are a good thing, usually work well, and deliver results.

It's not all rosy. Several care homes seem addicted to antipsychotics (or rather on foisting them on almost every resident) and there're big misconceptions on what medication can and can't do. I have no "anti-violence" pill, there is no "stop-them-wandering" tablet and we've yet to invent a "stop them being awake all night" tonic (other than the clever gases that our goodly anaesthetic collegues use). The "stop them asking the same thing 27 times" velotab doesn't work. The "anti-swearing" capsules don't exist. Behavioural changes arising in dementia are precisely that - behaviours - they're changes that arise through the illness, they're not an illness themselves and there're no tablets or cures to effortlessly fix them.

There's the rub.

Doctors and nurses do what they can for dementia care. But as Dr Crippen reminds us, what's necessary (as in, truly necessary, rather than merely desirable or a vaguely good idea) is an abundance of hands on practical care.

Continuing Care has improved this, in my corner. If we need 4 calls through the day and a call in the middle of the night, it can now happen. 5 miles away it can't. Why? I work in a deprived area, carers will work doing dementia care, it's a job young people can do and get paid for, without needing lots of exams. Some are bad at it but mostly it's done pretty well. 5 miles away is a much more affluent area. 17 to 19 year old girls don't opt in to dementia care there. Despite Continuing Care funding a patient's needs, the family can't use the cash to pay for someone to deliver care, since nobody's doing the work.

This has nothing to do with doctors and nurses and NHS Secondary Care. It has everything to do with appropriate care in someone's home to assist with simple things, like meals and dressing and bathing and toileting. Although health promotion would see meals and dressing and washing and toileting as "health" and the WHO would define that as part of one's "health" it's more common for us to see what we eat, what we wear, soaking in a bath or when we nip to the loo as part of what we do as part of our "social" routines through our day, rather than thinking of them as tasks done to optomise our "health."

This has fractured dementia care.

There's a twilight that, when sundowning, folk with dementia get lost in. Their needs are evident. Secondary Care's not tasked, resourced, staffed or in a position to deliver this care. Primary Care isn't. Social Care is tasked to, but invariably is not resourced to. There're then arguments around whether the person's needs, such as incontinence, are "health" or "social care" needs. Whilst arguing, nothing gets done.

Enter central bodies, to look at and address this unacceptable state of local affairs where PCTs, Primary Care, Secondary Care, Social Services, voluntary groups and private care do what they wish to do but eschew the shitty jobs.

In January 2000 the Audit Commission published the report, "Forget Me Not: Mental Health Services for Older People." Over 9 years ago, now. My, we should all be familiar with, inspired by, influenced by, implemented change and have effected change from this document by now, eh?

Elements of the report included :
o "The report emphasises the need for comprehensive assessment"
o "Information and advice should be readily available for carers"
o "Day hospitals are to be used for time-limited assessment and treatment"
o "A person with designated responsibility for early-onset dementia is recommended in all areas"
o "The report recommends that low-referring GPs should be contacted and offered support and training"
o "GPs should refer users and carers to local support groups at an early stage"
o "Effective communication, shared expertise and the need to exchange information are stressed. This might include joint assessments/reviews"
o "Services should be well coordinated and jointly managed services should be considered"

Good assessment, good advice/information, specified responsible clinical leads, work with GPs, good communication, coordinated care.
All simple principles generated 9 years ago.

Another GP laments the comments that GPs need more training. I agree that most GPs are perfectly capable of diagnosing dementia. 2 GPs, in moments of startling honesty, have asked me, "What is dementia?" But by and large, most are pretty clued up. Nurses and I are wont to visit GP surgeries to talk with their nurses, receptionists (the key to good referrals being sent to us) and the doctors so we've opportunity to update GPs on what's relevant. Ongoing training has a place but, like Jobbing Doctor, I don't see it as effecting a tidal wave of change over dementia care. GPs are clever folk, are immersed in high volume work and are easily accessed so, as night follows day, are intimately familiar with dementia care. Formal or further training will improve some pathways of care in some corners, but the changes overall will be modest. Critically, if I were to have a full day training all GPs in my corner, most patients and carers wouldn't see any benefit from this. More training would make small gains for some folk some of the time. Although, I suppose, we've ongoing training already in my patch, all GPs also have formal training already. Touting for more training of GPs is not the best way to improve dementia care.

Training care home staff makes a big difference. Training voluntary groups makes some difference. Training carers going in to poeples' homes makes a big difference.

I'm wary of national strategies. Partly it's me getting all Consultoid, resisting anyone telling me what I should be doing. But I see myself as a sensible soul and when change for the better's suggested, I'm the first in line. Mostly my scepticism is that it's national. How can we have a vision that suits affluent England but also the swathes of deprived communities I work in? That suits urban, tight, inner city service delivery but equally has operational utility in rural areas? The risk of such a strategy is that it's bland, without detail or sincere content, it's a "vision" that has little utility.

On Tuesday this week we were given the report, "Living well with dementia, The National Dementia Strategy," by the Department of Health. Rummage around the bits of it here, if you fancy.

It has 17 Objectives and Outcomes. PCTs will be marked against these. The 7 key priorities are :
o Early intervention and diagnosis for all;
o Improved community personal support services;
o Implementing the New Deal for Carers;
o Improved quality of care for people with dementia in general hospitals;
o Living well with dementia in care homes;
o An informed and effective workforce for people with dementia; and
o A Joint Commissioning strategy for dementia.

I like these. Who couldn't?

Our PCT has already looked at the 17 objectives and outcomes. They reckon what I do, what our service does, what the GPs do and what care homes do already adequately satisfies pretty much all the strategy. Their exercise is now in evidencing this. So, no change or improvement in "social" dementia care, then? It's conceded that this is desirable, but the need to evidence performance in the 17 domains is, of course, "the necessity."

I wonder how this document will be viewed, 9 years on? What beneficial changes will it have effected? At what cost?

The issues around excellent dementia care are neither complicated nor insurmountable. But they're not cheap. Rationing and limiting (health and social) care on financial grounds isn't a politically popular position to maintain, however real it is, and however desirable such an open discourse would be. So, because politicians can't talk about care, because already dementia care costs more than the costs of stroke, cancer and heart disease all put together, we've a "strategy" rather than "solution."

A missed opportunity by the DoH. So it goes.


Unknown said...

obstacles to good dementia care are not that dementia is poorly diagnosed

does this mean you think dementia is diagnosed early and easily in a sufficiently large number of instances?

The Shrink said...

Yes, the diagnosis is early and clear in the majority of cases that present. The biggest obstacle to early diagnosis is people asking for this, not the clinical complexity of diagnosis/lack of training.

Pem said...

I think that line between social care and health care gets at an important issue. Here in the U.S. I think it is part of why people are often shocked that Medicare doesn't cover home care. If my husband's 97 year old aunt needs an aide to help her bathe so she can go back to her apartment a month after fracturing her pelvis, that seems to me like health care. If my husband with Lewy Body Dementia ( will in a year or two need day care so I can continue to work, the government sees that as social care but I see it as health care because it is made necessary by his illness. I wish we could promote the view that just as insulin treats diabetes, the treatment for dementia is help with the activities of daily life. But no one is going to go there because of the cost.

Unknown said...

I tend to disagree, shrink. But reading your posts, I'm aware we're talking about very different situations.