If life is like a box of chocolates, then surely dementia care is like a cake?
Karen Dening (@KDening), Director of Admiral Nursing at Dementia UK, mooted this idea at the beginning of the UK Dementia Congress in Telford last week.
The strands in national policy for dementia care include a timely diagnosis, where much of the emphasis in policy and resources has been placed.
But it is pretty uncertain how many of the diagnoses purporting to be dementia in fact turn out to be the minimal cognitive impairment (cognitive symptoms, but not dementia). Also, it is unclear how many diagnoses of young onset dementia, where memory is very often not the first symptom, are being missed.
The policy also includes ‘dementia friendly communities’, better conceptualised as ‘dementia accessible’ or ‘dementia inclusive’ communities. The ‘friends’ programme in the England was modelled on the friends initiative in Japan, but here, and in Europe, especially much more effort has been to link the policy with human rights and equality.
Dementia is a disability, as evidenced by the guidance to the Equality Act (2010). So the approach of the United Nations Convention on Rights for People With Disabilities is very relevant here. As such, dementia is in a similar place to where activism on racism a few decades has been.
It would be wrong to think that ‘dementia friendly communities’, however defined, are a ‘quick fix’. There is a temptation to think that, coupled with ‘greater awareness’, the essence, unlike Vanilla Essence, is ‘cost neutral’.
As Prof John Hardy expressed on Newsnight last night, UK research into dementia is of a very high quality, as it has the integrity of the NHS to draw from on. Nonetheless it’s still the case that research in the dementias in the UK dwarfs the budget of the US, and the relative monies invested in research in the UK in the dementias is a fraction of that for cancer or HIV.
Clearly with social care on its knees, and likely to remain so in the UK’s forthcoming comprehensive spending round, not even a budgetary magic trick of transferring funding for dementia from social care to public health can save the care sector.
It might seem that the attractive, cheap, option might be to produce a new model army of a nation of dementia advisors or dementia support workers, but there is an inevitable danger of stockpiling the workforce with an abundance of relatively less skilled signposts to increasingly disappearing services.
Dementia is also not where cancer is, in the use of advance care planning advancing continuity of care, or a network of national clinical nursing specialists. Whereas Marie Cure and Macmillan have been spectacularly successful in clinical care of patients with cancer, the record of the dementia sector is abysmal.
On the other hand, Admiral Nurses, clinical specialist nurses from Dementia UK, are in a great place to offer care and support to people living with dementia and their carers. How wonderful it would be if the 850,000 people with dementia could rely on them as a first port of call to discuss with them the timely diagnosis, information about the condition and local services, medication reviews, continuity of care, advanced care planning, legal (e.g. power of attorney) and safeguarding issues, end of life, and even, later, bereavement issues. Admiral Nurses are as far away from a niche service, in representing unmet and met service needs, as you can get.
It is abundantly clear that the so-called masterchefs of the current cake have in fact made a pig’s ear of dementia care policy, promoting dementia as a brand far too much, ahead of the overall needs of the people who are trying to live beyond a diagnosis of dementia and carers.
This has been down to too much of certain ingredients, and not enough of others. The proof of the pudding, as ever, is in the eating.
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).
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”.
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.’
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.
Results:
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
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?
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.
