Dementia Strategies and Memory Clinics

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The National Dementia Strategy for England was launched yesterday with an impressive sounding 5 year plan to increase support people who are diagnosed with dementia and take through the different aspects that need to be worked on – from early diagnosis through to raising public awareness and raising standards in nursing homes by improving training for social care workers throughout the sector.

Some of the attention has fallen on the recommendation to set up ‘Memory Clinics’ around the country to support Alzheimer’s sufferers and carers of people with Alzheimer’s. I am not sure how much additional money is being provided.

A part of the reconfiguration of services in my own service was to allow for the setting up of a Memory Clinic. Four area CMHTs were merged into two plus a Memory Clinic. It was a what the management delightfully refer to as a ‘zero cost’ change – meaning that no additional money or posts were made available.

Of course, our new memory clinic hasn’t been running too long and setting up a service from stratch is never an easy prospect but there are a few elements that have concerned me.

Firstly – and this is a personal gripe so bear with me – the team is staffed by CPNs exclusively. Not that they aren’t wonderful, of course but there was no role for any social work input and that was a very deliberate move.

Our Memory Service is about diagnosis and then referral to adult social work departments if any kind of additional care is needed. I did suggest at the time that even having an unqualified social worker in post who could set up minor care packages at the very least, might make a more seamless service but this was seen as contrary to the ‘point’ of a memory clinic. It has a purely medical  model.

The CMHTs will take on people who have particularly complex needs or who have not been engaging with services as they always did but the staff have been moved out of the CMHTs to work in the memory clinic so we are even harder pressed.

Of course it is still early days. I am sure for some people it is a much better service. It means we, as a CMHT, are able to refer more people back to the Adult Community Care. That is seen as a bonus. I don’t think it is though. I came into my job from the Adult Community Care Team. I know that they have much higher caseloads than we do. They simply do not have the time to provide the same level of support that we can. Anyway, as I said, that’s a personal gripe with the way that our service was set up.

According to the BBC, Alan Johnson, the Secretary of State for Health, states  that

The clinics would be “one-stop shops”, offering expert assessment, support, information and advice to those with memory problems and their carers.

The clinics could be housed in hospitals, GP surgeries or in the high street, and patients could refer themselves, he added.

I’m not sure that our service has reached the ‘patients referring themselves’ part yet. We get most referrals  as always from GPs. These referrals still need to come in and when you work in a particular locality you get to know the various GPs and to be honest, almost all of them are great and refer if they have any doubts or concerns.

It still needs someone to actually make that trip to the GP in the first place though – whether an individual themselves – or a family member.

I can’t be the only person this has happened to but twice in the last couple of months I have made referrals myself to my own team when I have visited a couple at home and while visiting Mrs X have noticed that Mr X seems to be having memory problems. Of course the families involved have noticed but sometimes diagnosis is a scary prospect – even when, in reality, it is just a confirmation of something that everyone knew.

With all my cynicism though, more money is now going to be pumped into dementia services which is no bad thing as long as it is targeted money. If I were able to distribute it myself, I’d put much more into carers’ support, carers’ services and carers’ allowances.

So much of a patient’s quality of life depends on informal care networks. It is important that professional networks are available and most importantly are responsive but sometimes, providing actual cash to carers is much more important.

I would say some of the more valuable work I do is with carers and supporting them, at least psychologically, through some of the paths of dementia and the expectations of what may lie ahead when it reaches that point and gently nudging them to  make plans, make arrangements and preparations so that when the time comes at least they do not feel completely isolated or alone.

I see that the strategy is going to pilot a new role of ‘Dementia Advisor’. This, I think, seems to fall into this role but it can’t be a time-limited one. Someone does not need a dementia advisor solely at the point of diagnosis but it is important that there is a consistent through the process of deterioration and change. The strategy mentions that these advisors will be a place to turn for support for the person with dementia and their carer throughout. I assume additional funding will be available for these workers.

Some more and important positives of the strategy though is the recommendation for better dementia awareness and care in general hospitals. Having a team in a hospital that will advise and support patients who have dementia and improved training in care homes who are managing patients with dementia. It is hard to think that this can be a bad thing.

And there is also more money (if I have understood correctly) being put into research. Which can never be a bad thing.

Raised awareness of dementia, it’s broad reach and the implications and paths of care are all very positive. Some of the details – well, I’ll reserve judgement.

Just a reminder too, in the UK anyway, that tonight on BBC2 there is ‘Living with Alzheimer’s’ at 9pm –

Determined to prevent it if he possibly can, Terry Pratchett takes a personal journey through the science and the reality of what it’s like to be diagnosed with Alzheimer’s.

This two part documentary follows Terry’s race to find a cure as he endeavours to find ways of slowing, mitigating or even reversing its course.

I, unfortunately, won’t be watching – well, not live anyway. The snow flurry has blown my TV aeriel down  (which, if any of you knew me, you’d know how distressing this is as I’d say ‘TV watching’ is one of my prime hobbies (!)). At least I will be able to catch it on the iPlayer though .

Pratchett, BBC and Infra-red Helmets

I noticed from some trailers on the TV that next week (and the week after), BBC2 is airing ‘Living With Alzheimer’s’. It will be broadcast in two parts on February 4 and 11.

The BBC mini-site includes an interview by Terry with Prof Sir Michael Rawlings from NICE.

Apparently one of the things he will do is to trial an infra-red helmet that researchers say may improve cognition for people with dementia. The Alzheimer’s Society have released a statement particularly relating to this

‘We welcome any new initiatives to help fight dementia, but the infra-red helmet is still at an early stage of research. We need a proper clinical trial to determine whether or not it is a safe and effective treatment for people with dementia.

‘700,000 people are living with dementia and one million people will develop the condition in the next ten years. Many would try anything to stop this devastating condition robbing them of their lives.  It is vital that we do not generate false hope and that all potential treatments are rigorously tested.’

False hopes are indeed, not a Good Thing – but I have to say I’m intrigued by the idea and have made a note to remember to watch the programmes.

And I am grateful that Terry is so open about his Alzheimer’s and by sharing his experiences he is and has been able to break down a lot of preconceptions about the disease.

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