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 .

Support for Alzheimer’s

Tonight, on Dispatches (Channel 4 – 8pm) is going to be looking at support (or rather the lack of support) that is available for people with Alzheimer’s Disease and their families and carers in the UK.

The Guardian ran a brief story with Fiona Philips

(who will be presenting the programme) over the weekend. She is a breakfast television presenter who quit the ‘day job’ this year in order to spend more time looking after her father and her children.

She has been researching care for people with Alzheimer’s and commissioned

A YouGov survey of 767 carers of Alzheimer’s sufferers reveals that 27% of sufferers waited three years or longer for an official diagnosis. Another 17% never received one.

Philips goes on to explain some of the further findings of the survey

The shocking findings of our survey of carers revealed that 41% got little or no respite care and more than half received no help at all from social services. In addition, I discovered that some victims never get a formal diagnosis.

The survey also found that 19% of carers sometimes or often feel threatened by the sufferers they care for. Two-thirds said they would like training.

Now, working within a service that provides support and care for people with Alzheimer’s, this survey and the implications of it, did hit home to me.

There is, without question, a question of resourcing. I am also aware that while we now (with our new configuration) have a spanking new ‘Memory Clinic’ which has been specifically set up to speed up diagnosis and information – that has only been in place for a couple of months. I think it is an aspect of care that will be promoted when the government implement their new ‘Dementia Strategy’.

It may go some way towards signposting patients and carers towards assistance that would be available to them.

Support is more of a mixed bag though.

The team I work in does not see people who have dementia unless there are what is referred to as ‘management difficulties’ or ‘consistent refusal of care’.

In other words, someone that has dementia at an earlier stage will, after receiving diagnosis, be referred back to the Community Care Team to put in care and provide support – the idea is that the Memory Clinic will retain contact and medication (if necessary) while Social Services will be involved if direct care or carer support is needed.

We get the referrals back when things usually reach a later stage and things begin to fall apart either by refusal of care or carer stress becomes more evident.

What is obvious is that without initial diagnoses it is hard to access these services.

More than a few times, I have been to visit people and noticed that their spouses are displaying very obvious symptoms of cognitive impairment and refer the spouse back to the team myself. I wonder if I had not been already present in the situation, how likely it is that those people would have received referrals into our team and into the formal support services that exist.

Without doubt there will be a question of resources and the amount of people who could benefit from services versus the amount of resources that are available.

Anyway, it will be interesting to see the programme and I expect to comment after the event.

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