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There was a time when the GP used to be at the heart of a person’s community, as well as ‘delivering care’. For some people, there is no such thing as society, and the community consists of high street brands, banks and services (such as police or fire).
I’ve spent some time thinking about the implementation of the ‘dementia friendly community’ policy in a number of jurisdictions. It really has struck me how, for whatever political reasons, nurses are not perceived to be the heart of dementia friendly communities in England.
This, I feel, is a great tragedy. I don’t deny there are about a hundred different causes of a dementia, people’s social circumstances will differ (it is not uncommon for a female widower to develop a dementia while very lonely), cultural differences exist (for example in the rôle of the family in those of an Asian background), there are different rates of progression, and so on.
On receiving a diagnosis, I think support services in dementia should be much stronger than now. What is all too commonplace is a travesty. People don’t know where to turn to for basic information about clinical aspects, or wider aspects about living in the community.
As the dementia progresses, in the later stages, a focus will be to keep the person out of hospital wherever possible. Clearly, support and care in the community need to be funded properly.
A ‘crisis’ for a person living with dementia is where a ‘stressor’ causes that person no longer to be able to cope with living in his or her usual environment. There could be a number of causes of that, but it’s noteworthy that many of them are in fact medical. I disagree a specialist nurse in dementia is necessarily a job for a community psychiatry nurse (“CPN”), as the workload of such nurses tends to be very big.
But seeing a rôle for a CPN is not a trivial one, as I’m a fully signed up devotee of ‘parity of esteem’ where mental health is not seen as the ugly sister of physical health. For that matter, social work practitioners, who often find themselves at the heart of mental capacity decisions and safeguarding issues, should be on an equal footing too with other professionals.
I said to Chris, a friend of mine living well with dementia recently, “GPs will even be in a good position to coordinate information”.
I was in fact repeating words from a GP.
Chris, “So why don’t they?”
In certain respects, in designing a system you wouldn’t wish to start from here.
Without the focus on ‘budgets’ which do not necessarily deliver the ‘right kind’ of choice for the person with the health and care matters, it’s important that people with dementia have rights to a personal care plan, which is responsive to that person’s needs in real time. Knowing someone’s background is particularly essential in people with Alzheimer’s disease where longer term memories may be more intact. Knowing someone as a person is of course at the heart of personhood, through maybe a ‘life story’.
I don’t think it should be a ‘luxury’ of people with dementia following them after diagnosis through the system. I think, in fact, it should be an essential aspiration. It’s really important that somebody can cross off inappropriate medications, such as perhaps antipsychotics, on a drug chart if the person with dementia might not benefit.
It might help if a dementia specialist companion could spot problems in overmedicated people for blood pressure, for example. These individuals might become at risk of falls (and subsequent bone fractures if living with osteoporosis). Or somebody may be developing constipation or a stinging urine, becoming acutely confused. Dementia is not simply caused by conditions of old age, but frail individuals can do particularly bad when coming into contact with hospitals.
In the scenario that a person with dementia at any stage does need to go into hospital, it would help enormously if there could be continuity of care between the community and hospital. People with all types of dementia can find unfamiliarity, in people and environments, extremely mentally distressing, and this can be detrimental to their physical health (taking a whole person care approach). There are few people better than paid carers, with pay above the national minimum wage, and not on zero hour contracts, and unpaid caregivers including friends and family, to inform on these care plans, but the person living with dementia is the one for whom the plan is being designed.
All staff clearly need to be informed and skilled about dementia, and it is vital that resources are put aside for the adequate training of the workforce. The workforce themselves want this.
It won’t be a surprise to you to learn that I see specialist nurses in prime position to offer a huge deal to the implementation of whole person care for dementia from the next Government?
I think my views are broadly consistent with a number of places. A number of reports across jurisdictions have been important in establishing the direction of travel for acute hospital care: e.g. “Dementia care in the acute hospital setting: issues and strategies: a report for Alzheimer’s Australia” (Alzheimer’s Australia, June 2014), “Spotlight on dementia care: a Health Foundation Improvement Report” (Health Foundation, October 2011), and the Royal College of Nursing’s report “Commitment to the care of people with dementia in hospital settings” (RCN, January 2013).
Examples of appropriate clinical leads, as the RCN themselves recognise, are “Admiral nurses” from the charity @DementiaUK, Alzheimer Scotland dementia specialist nurses, dementia champions in Scotland, and ward champions. Merely having ‘dementia advisors’ will be a case of the bland and ill informed leading the bland, on the other hand.
Like many other ‘once in a lifetime opportunities’, if we get this right the service could be vastly improved. I am confident that, if given the proper funding to make this happen, and strong leadership cascades downwards, the next Government will rise to this challenge.
Dementia was mentioned twice today in Prime Minister’s Questions.
There was a ‘big announcement’ today from the Alzheimer’s Society which could have been used to convey the meaning of how people living with dementia could be encouraged to live well in productive lives.
As part of this publicity, Terry Pratchett was pictured holding up a placade saying, “It’s possible to live well with dementia and write bestsellers “like what I do””.
An Independent article carries the main thrust of this message:
“Up to £1.6 billion a year is lost to English business every year, as employees take time off or leave work altogether to provide at-home care for elderly relatives, according to the report, compiled by the Centre for Economics and Business Research (CEBR).”
“On top of those that stop working, another 66,000 are making adjustments to their work arrangements, such as committing to fewer hours or working from home.”
Paul Burstow MP brought up the first question specifically around this initiative.
Here is the Question/Answer exchange as described in Hansard:
The answer fails spectacularly to address the issue of living well with dementia, but is a brilliant marketing shill for ‘Dementia Friends’.
There’s no attempt to include any other charity working in dementia.
It doesn’t mention the C word either – Carers.
And then it was left up to Hazel Blears MP to provide another question on dementia.
This time it’s a bit different.
There’s no answer on how zero hours contracts cannot specifically in the care system promote living well for either carers (including unpaid careworkers) or persons with dementia.
But it’s exactly the same otherwise.
A brilliant marketing shill for Dementia Friends, and no mention of any other charity working on dementia.
Quite incredibly here, Cameron produces an answer on ‘caring’ in dementia without mentioning carers or careworkers.
With Ed Miliband, Ed Miliband and David Cameron all wearing their ‘Dementia Friends’ badges, is it any wonder you never hear about Dementia UK’s Admiral Nurses any more?
There is undoubtedly a rôle for all players in a plural vibrant community, but this should never have been allowed to become an ‘either’/’or’ situation.
With commissioners having to make crucial decisions about acute and chronic healthcare, and, with an ever increasing budget being engulfed for some by paying PFI loan debt repayments, it has never become more important to have properly funded resources for medicine, nursing and social care. Gimmicks, such as badges and pledges, or talks given by people with worse than a very basic knowledge of dementia, can have their place, but they are never a replacement for care and support from the State which needs adequate financial funding.
With graphs such as this displaying real time spending in the NHS as a whole, cutting back on care might seem like an easy option, especially with a supine media promoting ‘awareness’.
Awareness cannot be ascertained by how many stickers you have in a shop window, or how many corporates you have to got to sell your gimmick with your logo. It’s about a dialogue about the dementias are about, what medications can and cannot do, and possible strategies for supporting living well with dementia or what makes a care home, amongst lots of other issues.
There is an alternative to trivialising dementia. I am now actively avoiding twitter conversations which trivialise dementia to a gimmicky or an equally superficial level where you flit about talking crap to another.
From the point of an initial diagnosis, to navigating your way through an increasingly complex health and social care and benefits system, and to experiencing the raw emotion of it all, the experience might be called a ‘journey’. This term clearly has its limitations, as there aren’t any suitcases packed, and there’s no return ticket.
There are questions to be asked, invariably.
What form of dementia is it? There’s probably about a hundred different types of dementia, though Alzheimer’s disease is the most common form,
Is there medication which might slow down the symptoms? Recent years, with different agendas to blame, have witnessed obfuscation and subterfuge of this basic issue. See my recent blogpost here, for example.
Either way, what is the prognosis? How will the illness develop? What alternative support mechanisms are there? Can the person with dementia, at various stages, be supported to stay at home?
Or would a residential home offer a better quality of life? What determines a good residential care home? Could a member of the family accept the person into their own home? What is the role of the social services – will three 10 minute visits every day go anywhere near alleviating the family’s worry?
These questions are invariably important.
Yet, if the GP or the Consultant who diagnoses the condition, pointed the family in the direction of Dementia UK’s Admiral Nurses, so many of the family’s questions would be answered immediately and the “journey” now being undertaken would not be so lonely. It has struck me how keen people are for ‘befriending’ schemes run by people who literally have no idea what dementia is, while criticising vehemently the ‘care model’ of Admiral nurses. This is simply not on for me.
The problem is that there are far too few Admiral Nurses, and the name is not widely known – although, of course, it should be known by the medical profession. Until recently, Admiral nurses, only formed part of community nursing teams. But now the principles are being used in hospitals too.
Even if there is no Admiral Nurse in your geographical location, the medics could at least suggest Admiral Nursing Direct’s telephone help line. This is staffed by experienced Admiral Nurses and offers practical advice and emotional support to people affected by dementia. Admiral Nurses are supported by Dementia UK. The charity works with NHS Trusts and other not-for-profit organisations- such as Making Space, Age UK and the Royal British Legion – to set up the services.
It costs £80,000 per year for an Admiral Nurse – £50,000 for the salary (the NHS standard wage for someone who is as highly skilled as Admiral Nurses need to be) and £30,000 for the Admiral Nursing Academy costs, Pioneer work and other overheads. Dementia UK provides the £30,000 needed to train a Registered Mental health Nurse to become an expert in Dementia care and the salary is paid by the NHS or other not-for-profit organisations.
At the moment, there are only 85 Admiral Nurses in the UK and, clearly, with cases of dementia now topping 800,000 in England, many more of these qualified Nurses are – and will be – needed. Very many people have asked, “Would it not be better to invest the £2.4 million – set aside for the Dementia Friends Initiative – in the recruiting, training and expanding the network of Admiral Nurses?”
One thing that the general public are not is stupid.
All nurses can make a contribution across the dementia pathway, defined as the right care, support and treatment for a person with dementia in the right place and right time. This should be rrespective of provider, whether it’s within the NHS, social, private, voluntary or prison sectors.
This support starts right from living well with dementia, empowering persons with real information about what to expect from the condition, and reducing social stigma, through to early identification, diagnosis, and maintaining health and wellbeing. This will need ultimately to come to a helpful and constructive candid discussion about end of life care and bereavement support for carers and their families.
All nurses – public health nurses, midwives, mental health nurses, learning disability nurses, district nurses, community nurses/matrons, practice nurses, Admiral Nurses, specialist nurses including specialist dementia nurses, acute nurses, Macmillan nurses and palliative care nurses – all have their part to play in achieving, and sustaining, better outcomes for people with dementia, at all ages.
To find out if there is an Admiral Nurse in your area, please ring 0845 257 9406 (phones are answered Tuesdays-Thursdays 11am-8.45pm and Saturdays 10 am-1pm) or email firstname.lastname@example.org
If you are a carer for someone with dementia, you might think about joining Dementia UK’s “Uniting Carers”, which is an involvement network of family carers of people with dementia. The aim of the network is to give carers the opportunity to raise awareness and increase people’s understanding of dementia – and find support from others in the same situation. Click on the link on Dementia UK’s website.
Finally, it’s struck many of us that many hospitals are ill-equipped for patients with dementia when they are admitted with a medical problem. People with dementia don’t go into hospital because they have dementia, they are there because they are physically unwell but, unfortunately, acute hospital staff have been ill-equipped to deal with the added needs that dementia presents, both for the person with dementia and their carers.
With the introduction of ‘efficiency savings’, some acute medical departments took on the atmosphere of a conveyor belt.
This is alarming also for the junior staff who have to work in such conditions, whilst simultaneously expected to deliver ‘compassion’. Of course, for many who have never done a clinical rôle in their life, such as worked in entertainment or politics, it can be low hanging fruit.
Under such conditions, it can seem that meeting the physical and psychological needs of patient gets given a low priority.
And simple things can make a massive difference.
For example, if patients are confined to bays, they might be tempted wander off and be at risk to themselves or others.
On the other hand, if you give them a table and encourage patients to join each other for a biscuit and a chat, they will relax and have a much more positive experience of being in hospital.
Some nursing leaders clearly are passionate about reforming hospital care for patients with dementia and their families.
Take for example development of the pioneering dementia-friendly ward for patients with memory problems who are admitted with a medical condition, which includes brightly coloured doors to help patients remember which bays they are staying in and a lowered nurses’ station renamed “reception” to improve accessibility and ensure patients feel more comfortable.
So let’s give the gimmicks a bit of a rest, and invest in proper care and support for once?
.@legalaware Wow-thanks for such a detailed statement of support for Admiral Nurses! You’ve really captured their uniqueness&our challenges
— Dementia UK (@DementiaUK) April 9, 2014
AND FINALLY, here’s a petition to recruit more Admiral Nurses.
Yes, despite the “Prime Minister’s Dementia Challenge”, it really has come to this.
How very sad.