Thinking the unthinkable. A grand coalition of Dementia UK and the Alzheimer’s Society?

In a crowded space, the Alzheimer’s Society and Dementia UK, two large dementia charities, effectively ‘compete’ as dementia charities. However, in the last few years, funding for the Alzheimer’s Society for initiatives such as ‘Dementia Friends’, costing millions, as a public-not profit partnership has helped to skew this space, such that the Alzheimer’s Society has commanded a relative advantage.

There has been criticism that the clinical nursing specialist approach of the ‘Admiral nurses’ is not an appropriate business model, but it is also true that specialist nursing has been repeatedly marginalised in policy documents in the last few years. It is however generally acknowledged that, despite a widely acknowledged problem in English policy in bridging the ‘diagnosis gap’ of undiagnosed people living with dementia, social care and post-diagnostic support for dementia has been on its knees due to savage cuts in social care spending.

The clinical advantages of proactive case management of clinical nursing specialists have been widely rehearsed elsewhere. That is, despite a need for raising ‘awareness’ from people who are relatively underskilled themselves in dementia, there needs to be input from trained and skilled people in dementia. That the workforce in the NHS and care need to be skilled is widely accepted. As the demands for the acute medical services are likely to remain at fever pitch, it is a priority to keep admissions of people living with more advancing dementia, particularly those also living at frailty, at a minimum as such patients, particularly if unaccompanied by a caregiver, can do particularly badly in an acute admission due to the distress caused by an unfamiliar environment (amongst various reasons).

Politically, we are in a weird territory. It is felt that the most likely outcome of the UK general election to be held on May 7th 2015 will be a hung parliament, particularly if Scotland decides en masse to reject the Labour Party, and to vote for the Socialist National Party in majority. This has led to a former Tory chairman to argue, most recently, that a coalition pact between the Conservatives and Labour after the election may be the only way to keep the UK together if the Scottish Nationalist Party holds the balance of power at Westminster. There was formerly a grand Coalition during the Second World War.

That the Alzheimer’s Society and Dementia UK do different things in itself should not worry people in society at large, but the lack of plurality in this hugely important sector of dementia should. An overly dominant provider in any sector can lead to a dominant position where success begets success, and ‘Dementia Friends’ could be the shoo-horn in for services provided by the Alzheimer’s Society, even if this approach is vigorously denied or officially unintended by the Alzheimer’s Society. Whenever the media refer to dementia these days, it invariably is in the context of the Alzheimer’s Society not Dementia UK, and the Alzheimer’s Society, not Dementia UK, form the Secretariat of the All Party Parliamentary Group in dementia.

Charities could get 10-year contracts to help deliver NHS services if Labour wins the general election, according to Andy Burnham MP, Shadow Secretary of State for Health, to an audience of voluntary sector leaders. Not-for-profit care organisations would be given “a form of preferred provider” status under legislation that a Labour government would introduce to replace parts of the coalition’s 2012 Health and Social Care Act (2012). The move would recognise their contribution to strengthening communities, and form part of the legislative agenda of a new Labour government, if elected. This appears to be intended by Labour give voluntary sector providers “longer and more stable arrangements” than for-profit contractors, but will concern NHS campaigners as further evidence of public sector resources being transferred to non-public recipients.

Addressing the health and social care conference of Acevo, the voluntary sector chief executives’ group, Andy Burnham is reported to have said: “The voluntary sector should have a different status in law when it comes to contracting, in terms of length of contract and the way contracts can be renewed without open tender.”

There is a growing recognition that all those involved in dementia care need a greater level of expertise in managing general health problems. Several cardiovascular disorders have been suggested as risk factors for dementia, such as hypertension, hypercholesterolemia, atrial fibrillation and heart failure; it is generally felt that correct management of these conditions can slow down cognitive decline, reduce the risk for dementia, and a clear focus has to be in future on the interplay of medications for such conditions.

Co-morbid conditions can overlap with each other during the management of treatment, further mandating a case for clinical nursing specialists in “proactive case management”. Patients and caregivers can experience difficulties with the therapies prescribed for each co-morbid condition, reducing adherence to the treatment plan and consequently diminishing its efficacy.

Innovative commissioning, through the “prime contractor” model encouraging plural stakeholders including the third sector, could have a constructive role here in meeting wellbeing outcomes for the National Health Service, which will be critical in the delivery of “whole person care”. (For an overview of the primary contractor model see the Department of Health (2013) document entitled “The NHS Standard Contract: a guide for clinical commissioners“.) There is also a coherent economic case for such proactive case management in the drive to avoid certain acute hospital admissions for people with dementia.

In Staffordshire, the plan currently is for four clinical commissioning groups (CCGs), NHS England and Public Health England are working with Macmillan Cancer Support, and with the support of two local authorities, to redesign cancer and end-of-life care services. They are in the process of co-designing new care pathways with patients and carers.

Under such an arrangement, care is to be managed and contracted through a single provider, which will be held accountable for the entire patient experience and clinical outcomes. Involvement of service users and carers is central in determining the outcomes for this contract. The “prime provider contracts” will replace around 70 separate sub-contracting arrangements. Providers will need to demonstrate they have achieved a pre-agreed set of quality measures within a given expenditure target.

Contracts will be for ten years. In the first two years, the CCGs and Macmillan will support the selected prime providers to improve the currently available data on activity and costs. It is very difficult to deny that the impact of Macmillan specialist nurses has been a beneficial one, and has revolutionised post diagnostic service support and care for the cancers.

Aa key element of the prime provider’s work in the first two years will be to improve the data and analytics in order to provide a basis for a truly outcomes-based contract. They will also be expected to demonstrate real improvement in patient and carer experience.

Patient safety and patient experience are pivotal for the NHS Outcomes Framework. The aim of the NHS is not only to add years to life, but to add life to years. One could argue that the roles of raising awareness and ‘advising’ are important but complementary to highly specialist nursing support. Such specialist nursing support could work in tandem with specialist social practitioner input, as it is acknowledged that liberty and safeguarding issues are especially important for some patients in later stages of dementia in whatever care setting.

A grand coalition of more than provider, such as the Alzheimer’s Society or Dementia UK, and in social care, may be “unthinkable”, but perhaps has to be put on the agenda, especially if serious moves afoot to deliver whole person care are to become a reality. They would need to have meticulous governance arrangements in place. As a comparison, while ‘Manc dev’ arguably gives some financial stability and some breathing space for innovative integration of health and care to flourish, there is an apt concern that the proper mechanisms are not in place if anything goes wrong.

For dementia post-diagnostic support to ‘crash’ due to improper governance of funds would indeed be the unthinkable.

The English ‘Dementia Vision’ is a despotic dystopic farce


It’s a moot point whether the new ‘owementia Vision’ document, formally called the ‘Prime Minister’s Challenge on Dementia 2020′ will last longer than the current Prime Minister. Any reasonable person would feel that this has overstepped the line of political decency in being excessively partisan.

It was not so much published yesterday, but, rather, sneaked out under the RADAR of an announcement about how there were now one million ‘Dementia Friends’. Of course, this target was effectively gamed, by the offer of online routes for applying for a badge, and opening up new jurisdictions in the United Kingdom.

The new policy document is here.

One of the offerings in the new document is the reach-out to get a further 3 million dementia friends. Raising awareness of what dementia is is undeniably an important part of policy. But why could this project not been delivered across a number of dementia charities? Charities other than the Alzheimer’s Society have had their activities strangled off in an unbearably toxic atmosphere. The original press release claimed that “the £2.4 million programme is funded by the Social Fund and the Department of Health”. There is clearly also ‘mission creep’ in funding of this project. There then came the lucrative pitches for advertising agencies for this project as advertised by Public Health England. There’s overwhelmingly a need to lead a fight against dementia not necessarily to keep creative advertisers in gainful employment. How is it possible that the funds for a further reach-out for Dementia Friends can be successfully secured when social care is on its knees? Shouldn’t the responsibility of an independent dementia charity to campaign against a devastating situation in social care funding which has not been ring fenced since 2010? With nine out of ten care homes not meeting adequate standards for people living with dementia, David Cameron’s claim for the UK to the best place on the planet to have dementia is outrageously beyond contempt.

The first English dementia strategy was indeed an excellent document, making use of a wide variety of evidence; not simply documents produced by the Alzheimer’s Society. There is a vast number of Alzheimer’s Society initiatives mentioned, but not even with the most polite sop for others in the third sector. This complete lack of plurality in the third sector in dementia is reflected by the bare mention of specialist nurses, which have a huge amount to contribute in proactive case management. The fact that ‘Dementia Vision’ reads like a multi-author chain letter, rather than a coherent vision, is for me exemplified by the lack of acknowledgement that a national network of clinical nursing specialists in dementia would be in a great place to offer training and education of the workforce in dementia, and its different diagnosis.

But clearly this campaign has become severely muted in the rooms of the Downing Street and its friends, whilst the Health Services Journal is devoting a formidable supplement to it shortly. The whole issue of how people with dementia can avoid crises or hospital is a key one in health service provision, and whilst there is barely a mention of social care in the ‘vision’, apart from a ‘better care workforce’, there is mention of the infamous “Better Care Fund”:

better care fund dv


But even as Chris Ham, CEO King’s Fund, says, the Better Care Fund is not THE solution. And one of the main solutions on offer, with proper coordination of care, personalised care plans and data sharing, comes in the form of ‘whole person care’, completely airbrushed from the ‘Dementia Vision’ document.

Better Care Fund

The whole issue of the personalised care plan, as a mechanism for involving personhood throughout someone’s time post diagnosis with dementia, seems to be ignored, and the contributing members of ‘Dementia Vision’ are utterly wrong if they feel that they only apply to advanced care planning:


This is completely opposed to the current evidence-based literature. But this conveniently gets round the issue of clinical nursing specialists who are there at all points after the diagnosis of dementia. An Alzheimer’s Society “Dementia Adviser” will do. Funny that.

But I suspect that this is an inappropriate cheap political point, rather like the title of the document ‘Prime Minister Challenge on Dementia’, rather than a genuine disregard of important policy both here and abroad. Personalised care plans are covered in detail in the work from the Carers Trust and the Royal College of Nurse, and simply because of this disregard of this ‘Triangle of Care‘, together with the airbrushing of social care, my inclination is to flush the ‘Dementia Vision’ document down the toilet.

Dementia V|ision

How the excellent 2009 ‘Living well with dementia’ strategy document got transmogrified into a water-downed ‘dystopic’ wishlist for the Alzheimer’s Society is anyone’s guess, but the chaos in its formation is indeed charted well in Hansard. Even originally in February 2004, and a few months afterwards, the current Government were maintaining a pretence of strategy rather than a wishlist of ambitions.

For example

timetable for NSD

There are indeed some positive aspects to this, for example the investment in carers.

Greater support for carers: £400 million has been provided between 2011 and 2015 so that carers can take breaks and the Government has introduced significant legislative changes to better support carers, who for the first time will have the right to an assessment of their eligible need.

But even here the issues with the Dementia Action Alliance Carers Call to Action are not discussed. Nor is ‘life story’ discussed properly. The lack of evidence base for ‘Dementia Vision’, I feel, is the most haunting aspect of the work which will come back to haunt their authors. Particularly worrying is the extent to which the document will bind future Governments. The general parliamentary principle is no parliament can bind its successor, but with the catastrophic cuts in funding in social care does a new Government, if different from the Conservative Party and the Alzheimer’s Society, wish to fund a package for induction of top FTSE companies into ‘dementia friendly communities’. The whole dementia friendly communities is not without a significant body of critics worldwide, who have called it divisive and patronising, but this is another shoo-horn for domination from the Alzheimer’s Society. taxpayer


But then again this would be mitigated against if this programme could be organised by more than one stakeholder, for example the Joseph Rowntree Foundation.  As I remarked earlier this week, the “Dementia Vision” document reflects the ‘squeezed middle‘, between prevention of dementia at one end, care homes at another end, and aimless direction for those individuals attempting to live well with dementia who are in the meantime stuck in the middle. Sure, it is all very well to be ‘dementia friendly’, and I recognise the document’s recognition of international law in human rights, but there is no convincing discussion of equality and human rights. In the overall scheme of things, there are some reasons to be cheerful, as Ian Dury and Sube Banerjee put it, for example the EU ALCOVE recommendations for dementia policy.

Consequently, taken as a whole, the entire ‘Dementia Vision’ has turned sadly into a despotic dystopic farce. Dementia UK must, however, be congratulated though for being mentioned in a number of footnotes.



Specialist nurses should form part of the post-diagnostic care and support network for living well with dementia

Background: There have been numerous concerns that the health and care system in England is too fragmented, and lacks sufficient focus for a person with dementia or caregiver to navigate through the system.

A complex array of health and social care services is needed to support people living with dementia; “carers find navigating systemic issues in dementia care time-consuming, unpredictable and often more difficult than the caring work they undertake.”(Peel and Harding, 2014).

One of the “pillars” of the Scottish strategy invokes a “dementia practice coordinator“.

This rôle is: “a named, skilled practitioner who will lead the care, treatment and support for the person and their carer on an ongoing basis, coordinating access to all the pillars of support and ensuring effective intervention across health and social care”.

There are a number of possible professions which might be involved in this care coordinating role: for example, GPs taking a proactive approach to their patients, or social care practitioners who might have particular expertise in safeguarding issues (e.g. Manthorpe et al., 2007).

The Alzheimer’s Society suggest a “dementia adviser” role.

In this framework, the dementia adviser service would be ‘primarily for people with dementia, as well as their supporters and carers. It provides them with a named contact throughout their journey with dementia. Referrals to the service may come from GPs, CMHTs or other health and social care professionals, or self-referral.’

It is interesting to note that such a rôle was described clearly in the 2009 Department of Health English strategy document for dementia policy: “Living well with dementia”:


Clinical nurse specialists (CNS) in cancer perform a range of complex activities, including the management of care.

Recent evidence from the University of Southampton suggests that a properly trained and educated dementia specialist nurse, undertaking a clearly defined role, and working directly with people with dementia and their carers for a significant proportion of the time, could benefit people with dementia in hospitals. If these benefits addressed only a fraction of the excess stays experienced by people with dementia, a significant return on investment could be obtained.

CNS who practise proactive case management and refocus services in line with best practice represent a good return on investment (Leary and Baxter, 2014).

Recently, calls have been made to expand a pioneering dementia pilot in Norfolk after an almost £110,000 investment resulted in more than £400,000 savings for health and social services in less than a year.

The meaning of the term ‘timely diagnosis’ in dementia has recently come under close scrutiny.

For example, Dhedhi, Swinglehurst and Russell (2014) state that: “Reluctance or failure to make a diagnosis on a particular occasion does not necessarily point to GPs’ lack of awareness of current policies, or to a set of training needs, but commonly reflects this range of nuanced balancing judgements, often negotiated with patients and their families with detailed attention to a particular context.”

The  Carers Trust has been working with the Royal College of Nursing to adapt the Triangle of Care to meet the needs of carers of people with dementia when that person is admitted to a general hospital. This approach, which has gathered some momentum in English policy, puts the person living with dementia in a ‘triangle of care’  in a ‘triangle of care’ with professional and carer (see page 6).

There is clearly a potential rôle for a third sector charity, such as Dementia UK, in providing clinical nursing specialist input. The success of Macmillan Cancer in the ‘prime contractor’ model for integrating cancer and end-of-life care in Staffordshire, as an example of outcomes-based commissioning, is, arguably, a very good recent paradigmatic example.

Aim: To conduct a preliminary online survey into citizens’ attitudes to what post-diagnostic support in the English jurisdiction could look like.

Methods: 87 respondents completed the online “Surveymonkey” survey, invited from a Twitter account with around 12000 followers. The survey could only be completed once.

You were invited to be a person who had just received a diagnosis of dementia in the English jurisdiction.

Exclusions: None.


Q1. By far, the most preferred option was to go to see your General Practitioner with a view to receiving, if correct, a diagnosis of early dementia, if you’d noticed a decline in your memory and been aware of a public campaign on dementia (47%); talking about your concerns with your friends or family, to see what they suggest, was the next preferred option (34%).


Q2. This was extremely finally balanced. One option was most preferred (38%), that of staying with your GP, but attending for the next couple of years regular six-monthly meetings with a hospital neurologist to observe follow-up with CPN support; but only just, as staying with your GP, who can help organise care and support for you and your closest consisting of a multidisciplinary team, was the next preferred option (36%). The option to stay with your GP, but ring up a local charity helpline to see what they can suggest to help you, regarding information and life choices, was the least preferred (26%).


Q3. The option where a clinical nursing specialist had been added incrementally to a speech and language therapist and clinical psychologist was by far the most popular option (72%).


Q4. The option where you initiated follow-up for post-diagnosic support following diagnosis as soon as possible, relatively in 2017, was by far the most popular option (92%).


Q5. Three options were given for who the ‘care coordinator’ could be. A clinical nursing specialist was by far the most preferred option (48%), then ‘dementia adviser’ from a well known charity (33%), and then the GP last (19%).


The rôle of the ‘dementia adviser’, particularly at the earlier stages of the condition at least, is clearly worth considering in future policy such as the English dementia strategy 2015-20.

Q6. This question asked who you would like the most to organise your care plan with you: your primary caregiver was the most popular choice (44%), with a clinical nursing specialist the next popular choice (36%).


Q7. Here it was introduced that a clinical nursing specialist was one of the options in the new English dementia strategy (2015-20). The rationale for this, most felt, should come from clinical outcomes (76%), then financial considerations from the funding situation of the NHS and care (14%). The option where powerful lobbying from charities (“third sector”) should be the driver for specialist nurses was the least preferred (10%).


Discussion: The results confirm previous anecdotal reports of the need for timely post-diagnostic support following ‘timely diagnosis’.  They paint a picture of a person who has become aware of dementia awareness campaigns and noticed possible symptoms in himself wishing to trust to see a General Practitioner to receive a diagnosis. On receipt of that ‘timely diagnosis’, he or she would be keen to initiate post-diagnostic support as soon as possible, with a multidisciplinary team; it is striking that a clinical nursing specialist was preferred to the rôle of the ‘dementia adviser’ from a charity previously mooted; and that the decision in policy to implement clinical nursing specialists should be made on the basis of clinical outcome, not financial pressures in which the NHS and care find themselves. Notwithstanding that, the results support heavily a ‘triangle of care’ involving a caregiver and a professional, such as a person living with dementia, in the formation of a personalised care plan.

Limitations: There are no geographical data of the locations, or other demographic data, of the respondents to this online survey. Responses might be biased by the nature of the Twitter threads which had invited respondents to participate, or the nature of the followers of those threads. The questions assume a working knowledge of what the key personnel in a multidisciplinary team for dementia care and support do.

Although respondents were advised to select one of the options, however inadequate the options were, it is a limitation of this study that options did not include social care practitioners. Social care practitioners will, however, have a critical rôle in dementia post-diagnostic care and support.

Conclusions: The findings taken together provide important considerations for future policy-makers regarding post-diagnostic support for dementia in the English jurisdiction, urging the need for a rôle for clinical nursing specialists in delivering prompt post-diagnostic support and in avoiding, on the basis of clinical need, inappropriate care in hospitals.


Selected readings

Carers Trust/Royal College of Nursing. (2013) The triangle of care. Carers Included: A Guide to Best Practice for Dementia Care

Dhedhi SA, Swinglehurst D, Russell J. (2014) ‘Timely’ diagnosis of dementia: what does it mean? A narrative analysis of GPs’ accounts, BMJ Open, Mar 4, 4(3):e004439.

Leary A, Baxter J. (2014) Impact of lung cancer clinical nurse specialists on emergency admissions, Br J Nurs, Sep 25, 23(17), pp. 935-8.

Manthorpe J, Clough R, Cornes M, Bright L, Moriarty J, Iliffe S; OPRSI (Older People Researching Social Issues). (2007) Four years on: the impact of the National Service Framework for Older People on the experiences, expectations and views of older people, Age Ageing, Sep, 36(5), pp. 501-7.

Peel E, Harding R. (2014) ‘It’s a huge maze, the system, it’s a terrible maze': dementia carers’ constructions of navigating health and social care services. Dementia (London), Sep, 13(5), pp. 642-61. d


2 Qns in #pmqs on dementia, but 2 As on ‘Dementia Friends’ not living well with dementia

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.