Tag Archives: post-diagnostic support

The term 'post diagnostic support' for dementia is as unconvincing it sounds


The term ‘post diagnostic support’, as applied to dementia, I feel is incredibly unconvincing. English dementia policy has entrenched itself in a position of the primacy of the diagnosis. I do not wish to rehearse yet again the numerous arguments for and against the timely diagnosis here.

In an ideal world, ideal for Big Pharma that is, you’d invest in an insurance package in the US., or you’d be a patient of the NHS, and, on your diagnosis of possible dementia, your general practitioner would prescribe you a “magic bullet”. The bullet might slow the progression of your dementia right down, or may even stop you getting definitive symptoms.

And there is quite a quaint faith in ‘cures’. You can’t as such ‘cure’ headaches or asthma. And the drugs which were trialled on healthy 30-40 year-olds as single interventions aren’t necessarily going to behave themselves in 60-70 year-olds with a number of other medical complaints receiving polypharmacy.

But the world is not ideal – the cuts in social care around the world are testament to that. If the numerous failures in orphan pharmacotherapy for Alzheimer’s disease is anything to go by, it might be wise not to repeat the same mistake yet further and expect a different result.

The diagnosis disclosure itself is not the simple imparting of information that ‘you have dementia’. It should be a chance for the person giving the diagnosis, whether a physician, GP, specialist nurse or otherwise, to explore the beliefs, concerns and expectations of the recipient of that diagnosis. And if necessary, it should be a chance for the person to have some counselling about the potential implications of the diagnosis.

The phenomenon of ‘nothing can be done’ has a number of repercussions for people. It can lead to a delay in seeking a diagnosis, and lead to a lack of engagement with the diagnosis once given.

It is also untrue.

A correct diagnosis of dementia could lead, perhaps, to the correct care and support mechanisms coming into action.

I have personally problems with the notion of ‘consumer choice’, but not because I am a protecter of the professions’ vested interests. Far from it.

I once asked Prof Bob Woods what he thought of ‘meaningful activities’. Prof Woods replied ‘better than meaningless activities, I suppose, Shibley?’

Likewise, it has to be, surely, the case that choice is meaningful too? Actual choice is scuppered by all of the social determinants of health – and in particular lack of money.

But I do not agree with an overly paternalistic, profession-driven, approach either. I think a person after a diagnosis of dementia should be actively making decisions about what’s best for him or her after diagnosis.

This might include appropriate housing as a personal home, or residential settings. Or it might include help with speech or swallowing from a speech or language therapist. Or it might include preventative strategies for medics for high blood pressure or high cholesterol. Or it might include occupational therapy intervention for assistive technology help, such as memory aids, not all of which is prohibitively expensive.

I think also the ‘enablement’ perspective also recognises that you may not be able to get a person to exactly where he or she was before, but allows for diversity, and allows for the existence of a person equally as valid, at least, as that pre-diagnosis.

Planning for the future also necessarily involves protection; and this could include protection over financial and legal affairs, such as power of attorney or budgets. The social care profession must have a seat at the table there.

I really do feel the term ‘post diagnostic support’ does a disservice to what should and could be happening beyond a diagnosis of dementia. This is evident in the output from some of current clinical leaders in dementia all too sadly.

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My final book on living with dementia: seeing the big picture

The picture above was taken at Ljubljana in Slovenia where we had the 25th Alzheimer Europe conference on the theme of “Dementia: Putting strategies and research into practice”.

Perhaps one of the most overused terms of the century is ‘breaking down the silo’. I don’t know enough about the engineering of silos to comment, thankfully.

I wish to explain in my blogpost here the overall direction of travel for my final book to do with dementia. Like the previous books, it will be heavily guided by the current literature from the brilliant people doing dementia research around the world. This research comes from a number of different angles as usual: looking for therapies for particular dementias, as well as research which is more geared towards economics, law, psychology, or cognitive neuroscience. And crucially the lived experiences – great, good, and bad.

My final book will be on enhancing health in dementia. Health is not simply the absence of illness and disease, and the books will resume the social model of disability not the biomedical model. For my book, I will need to draw on current evidence and guidelines particularly from the medicine and nursing professions nonetheless, but only as relevant to “the big picture”.

The topics will mark a clear departure from my previous books ‘Living well with dementia: the importance of the person and the environment’ and ‘Living better with dementia: good practice and innovation” in some areas. There can be no denying that persons living with dementia in residential homes and at home are also living as part of “dementia friendly communities”.

I am particularly mindful of imminent developments in quality of post diagnostic support from the Alzheimer’s Society, Dementia UK, Care England, Care Quality Commission and NHS England.

Book 1

Details here


Book 2

Details here


Prof Sube Banerjee, Professor for Dementia at Brighton and Sussex Medical School, has kindly agreed to write the main Foreword for my third book. Sube will be joined by Lisa Rodrigues, formerly chief executive of Sussex Foundation Partnership Trust. Joining both Sube and Lisa will be Lucy Frost, clinical nursing specialist and campaigner.

They in fact join a great line up of brilliant people who have contributed forewords to my previous two books: namely, Kate Swaffer, Chris Roberts, Beth Britton, Prof Facundo Manes, Prof John Hodges and Sally Marciano.

The first book was written around the NICE Quality Standard 30 on “Supporting people to live well with dementia”. It was written just after the hugely successful Prime Minister’s Dementia Challenge, which coincided with a strong leadership drive to do with dementia around the world including the G8 and G7 legacy events. Another major event was the one hosted by WHO and Alzheimer’s Disease International in Geneva in March 2015.

My first book had a bias towards English dementia policy. My second book took a much more holistic view, and indeed included two chapters on global dementia strategies and diversity. In my second book, I introduced the importance of integrated care and whole person care in ‘seeing the person, not the dementia’.

In my third book, I will need to come back to recent service innovations in England, including the ‘vanguards’ and the ‘new models of care’. There is however a tendency though to be attracted to the ‘new and exciting’, and not to give proper scrutiny to on-running threads in policy.

It is going to be necessary to refer both to the developments in England’s policy, including also developments in system redesigns offering better value and system leadership, in my third book. I would also like to draw on best practice from other countries, for example the Alzheimer Society of Ireland’s anti-stigma campaign, or Scotland’s ‘Focus on Dementia’. The lead given on person-centred dementia care by ALLIANCE Scotland will be reflected.

There are a number of workstreams in Europe which are particularly relevant to this third book. I wish to address fairly addressing the health needs of persons living with dementia, whether in care at home or in a residential setting (such as a care home or nursing home). I should like this book also to retain the strong human rights theme developed in book 2, with discussion of how the UN Convention on Rights for Persons with Disabilities could be applied for dementia around the world.

My hope for the third book, like the previous books, will be that the content will be quite generic. It is hoped that I will showcase some of the outstanding work that has recently begun to emerge in journals and at conferences. I myself have been to, and spoken at, a number of conferences in 2015. This has been enormously helpful for me in weighing up the ‘hot topics’ for my book.

Quality of care is the overriding theme of my book. In keeping with parity of esteem, I wish to address aspects of mental health in a wide context (e.g. insight, effects of sleep hygiene, anxiety and depression) on a par with physical health (e.g. infections, frailty, fall, fractures).


I introduced rehabilitation and recovery in book 2, and I wish to elaborate on this work in discussion of life story, reminiscence, cognitive stimulation therapy, and wider approaches.

I wish to look at the overused phrase ‘meaningful activities’, and to think about the place of these activities in both care at home and in residential homes.

I will look at the importance of relationships not only between residents and others to improve quality of life and care but also between staff to improve leadership and staff skills. I will also consider intimate relationships and sexuality, and spirituality.

All patients in all care settings in this jurisdiction are entitled to the best standards of NHS and social care, and certainly free from abuse and neglect. Intelligent use of technology is paramount for integrated care, including electronic health records and mitigation against prescribing errors. Many persons with dementia live with important co-morbidity, and technology is an important consideration in self-management.

For an integrated health and care system to work, persons with dementia should attend acute care only when necessary, care transitions should be facilitated as should patient flow and appropriate use of other healthcare settings. Careful case management including dementia advisors, dementia support workers and clinical nursing specialists, will be extremely important.

I intend to devote a chapter to end of life, particularly drawing on high quality research from palliative medicine. I wish to consider advance care planning, difficult conversations, anticipatory grief, reactions of residents, place of death, end of life in residential care, and dementia as a terminal disease.

Finally, it cannot be assumed that all persons living with dementia ultimately wish to live in a care home. Therefore, I will consider care at home, respite care, living alone with dementia; as well as possible future developments in extra care housing, smart homes, and the implications for the ‘aging in place’ policy strand.

I am hoping to cover this all in thirteen chapters in about 300 pages. I do not wish to promote any particular chain of care homes, but I would like to provide case studies of great practice. It is my intention to continue consulting as widely as possible. As regulation is a pervasive theme in this book, I intend to meet up with Andrea Sutcliffe from the Care Quality Commission. I also intend to liaise closely with people who have experienced the services in different regions of the UK including Wales, through, for example, voluntary sector organisations such as Age UK.

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Time to press 'refresh' on innovative post-diagnostic care for dementia


There’s no way of avoiding the issue. The drive towards improving ‘the diagnosis gap’ for dementia has been dreadfully depressing given how incredibly poor the post-diagnostic systems can be.

NHS England, in collaboration with others, which has a formidable track record in getting things disastrously wrong in dementia policy, are said to be fine-tuning a possible NHS outcome measure for people living with dementia independently with a good quality of life. One can only imagine.

Doing things differently is not some cheap meme as a cover for huge cuts at local and national level here, however. The chance to improve lives after a diagnosis in recovery, enabling meaningful choices, giving the chance for people to take part in a mainstream services such as education, housing and transport, are all pivotal. And commissioning should reflect that. The legal framework now is considerable, but the final common pathway is arguably the NHS Standard Contract. Reflecting recent domestic legislative changes in recent governments, and of course the EU Procurement Directive, there is now express reference to innovative new contracting models, including lea provider, integrated provider hubs and alliance contracting.

At the one end, living better with dementia is a philosophy. At the other end, it involves a person with dementia and carer being ‘recipients’ of services. Alliance contracting is more suited for arranging the post-diagnostic care because of the less adversarial approach by multiple providers in arranging care, an ‘in it together’ modus operandi to meeting pre-determined outcomes, and sharing of risk and responsibility. Increasingly, there is recognition of outcomes and values, and standards, having to be met regardless of precise care setting. This might be, for example, in relation to functional outcomes, patient experience and view, or the external built environment.

I don’t think a medical model is the best way forward, but it’s utterly irrelevant what I feel. The starting point must be a reference group of people who’ve received a clinical diagnosis of dementia recently, whether that be in the younger or older age group, and finding out whether services following diagnosis met up to expectation. My gut instinct is that an annual check up in neurology or geriatric outpatients simply to report what cannot be done compared to the year before only serves as a demoralising experience, and fails to acknowledge what people can do (rather than what they cannot do). A clinic run only by clinical nursing specialists, social work practitioners and allied health practitioners is not some ‘money saving gimmick’. I feel it would be a far more effective way of organising post-diagnostic care in English dementia policy.

As in all other walks of life, the basics have to be done well, whoever does them. This means building up relationships from skilled practitioners and professionals, people who understand what happens in dementia, and what might be anticipated to happen. Of course, the wider environment is important, with people having inside knowledge of how the system works. Clinical nursing specialists understand the configuration of care pathways, and are in an ideal position to help with service reconfiguration, one feels.

Specialist nurses are very well versed in symptom control of long term conditions, and this has massive advantages, not only in leading a healthy active life (perhaps remaining in the workforce if desired), but also in avoiding places such as A&E. Knowing the best way to control symptoms is inevitably a specialist art, but one based on the up to date evidence base. They have a proven track record in coordination, communication and emotional support. They work extremely effectively with other practitioners and professionals, and take on a strong advocacy rôle on behalf of patients, acting as consultants to other members of the workforce too. They support carers in a number of ways, not least in emotional and psychological support. They furthermore have a pivotal rôle in education, training and practice development.

Large numbers of people with dementia, on the other hand, are admitted to hospital very year, and their experience can be poor both within the hospital and in trying to leave the hospital (delayed discharges).  Their needs as individuals are often very complex, many unmet ultimately by the hospital admission. However, the input of Admiral nurses in Southampton with people with dementia and carers at Southampton, for Medicine for Older People, has been very beneficial clinically, and cost-beneficial too, but notably as well as supporting the development and confidence of staff nursing individuals with complex needs. And the economic benefits in Southampton are clearly not a ‘one off’.  The current service provision of Age UK Admiral nurses in Norfolk is in its infancy and has already demonstrated that significant savings and benefits can be achieved by supporting families/carers of people with dementia.

But there needs to be a strong dialogue with the public. The public needs to be crystal clear about the advantages of such specialist nurses, say compared to a doctor. People need to have their information needs met about such a nursing service, and this needs to be ongoing. Information can be much hyped up in delivery of such a service, but it is very easy to understate its importance. This might include information in relation to budgetary considerations, setting up goals and action plans, information about peer and support groups, or information about self care and management.

Given the considerable co-morbidity of dementia, there is a rationale for tackling physical illness for people living with dementia. Arguably also tackling physical factors might prevent the rate of progression to disability in dementia too. Self care and management not only improves physical health outcomes, but inevitably helps with mental wellbeing, greater confidence and reducing ill being such as anxiety. None of this is of course to undermine a fully funded health service.

However, amongst this mass, the system needs to be flexible, and deliverable. There is no need which is ‘basic’, but people should be able to call on help with shopping, housework, dressing, companionship, and so on, as hoped in the full ethos of re-ablement. Clinical nursing specialists are already able to work successfully with certain agencies locally, for example Age UK. The NHS tries to inform about key national information choices with platforms such as NHS Choices. Increasingly they need to responsive to the exact ‘state’ of statutory services, and navigation through welfare instruments such as the personal independence payment.

It is impossible to escape the need for care coordination and overseeing progress in acute medical services. The Admiral DIRECT service was launched in 2007, as a national helpline and e-mail service, and has given comfort to thousands in offering specialist advice to people with dementia and carers. And care coordination is not fluffy stuff either. Advice might include medication reviews, referral to liaison services, or speedy discharge planning. There is a huge amount of care coordination and social care, too. The rôle of social care practitioners  in enabling and protecting in dementia policy is by no means to be underestimated in national dementia policy in England, having a pivotal function in the implementation of mental capacity and liberty safeguards.

Integration of health and care makes care coordination infinitely easier improving outcomes. The St John Care Admiral experience in Oxfordshire with 71 care homes has seen Admiral nursing knowledge and expertise valued. And attention has to be given to end of life, in coordinating care between earlier faces of dementia to later faces. Evidence currently suggets during their last 90 days of life, people are twice as likely to die at home and are much less likely to need emergency hospital care. End of life is of course part of the continuum of care, and in the philosophy of person-centred care should not be seen as an unexpected event. There has been much emphasis therefore on a ‘good way to die’, and integrated care for dementia must take account of this best practice.

Programmes such as the ‘year of care’ with proper NHS support are significant to explore what is required to effectively deliver personalised care and support planning. Typical benefits to people with long term conditions include involvement patients in decisions about their care, and giving patients better understanding of their condition. The benefits for the wellbeing of people with dementia would be enormous, if the NHS invested here, to drive quality in improved quality of life, and observable by fewer complaints and less inappropriate use of medication. Even with conditions with a strong wellbeing component, such as diabetes and frailty, such approaches can be validly criticised for being overly medical. This I feel would be a wrong lever to pull, an overly medical ‘year of care’ – but one which emphasised reablement and rehabilitation in a social model of disability, advancing rights based approaches, would be very welcome here. Such an approach should be naturally attractive to commissioners, particularly if people living with dementia are actively involved in co-producing the roll-out of this programme. This would, arguably, provide a stimulus to the whole healthcare community to redesign services for long term conditions, ensuring the right care is provided, in the right place, at the right time, by people with the right skills, with the right funding tools; and fit in with QIPP.

Many helpful care services can be arranged through the local authority social services department. How services are organised, and the kinds of services offered, differs from one local authority to the next. Social workers have specific training and qualifications, and it is crucial that national policy no longer wilfully neglects social care in delivery of dementia policy (which might be ‘attractive’ given the recent catastrophic cuts to social care budgets). Social care practitioners may be involved in assessing a person’s needs for services, and in planning, co-ordinating and advising on services. They work in a wide variety of settings, and are known by a variety of names. For example, some work as ‘personal assistants’ in the person’s home, or in care homes as ‘care workers’.

Of course, the financial considerations are overwhelming, and services need to be a strong financial footing to be delivered effectively. But for too long innovation has been used as a lazy meme by people who don’t really understand it, used simply as form of marketing, and do not understand the critical nature of the diffusion of innovations in making them work. The change required for post-diagnostic care and support and dementia is a root and branch one. But the fact that people are crying out for it, and actually know they will have to be willing to pay for it, needs to be factored in.

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