Where English dementia policy needs to go now: a personal view for #AlzDebate

Dementia wordie

I am an academic physician specialising in dementia. I write this blogpost as a guide to people who might be interested in my views on where English dementia policy needs to head.

I spend most of my time studying the latest papers around the world in dementia and other cognitive disorders from here and around the world. I also seek out the views of people who’ve received a diagnosis of dementia, and live daily with the condition. I haven’t ‘engaged’ them, or ‘involved’ them. They’re my friends, and I chat with them. I am also interested in the beliefs, concerns and expectations of those closest to them.

I’m slightly fed up of people promoting themselves in English policy to be blunt. These are people who feel their own self importance is more important than the needs of people with dementia and those around them. I am sick of how dementia has become an ‘industry’.

Conversely, people who have a diagnosis diagnosed below the age of 65 need professional help and guidance to help them navigate through the effects of the diagnosis on their social networks and/or employment.

We can’t leave people languishing with such little support in parts of the country – and we don’t just need a high volume of low quality diagnoses. All diagnoses have to be correct as far as possible, and I suggest committing resources for training up GPs or specialist nurses who already have a good knowledge of general medicine to assist with this.

The policy thread of ‘dementia friendly communities’ is well intended. For me, however, it smacks too much of the ‘does he take sugar?’ phenomenon. Maybe it’s the case that I am indeed supersensitive to this. I am physically disabled, and do tend to notice how people’s attitudes can be incorrectly formed on this basis.

One of the most inspiring talks I heard recently was by Simon Baron-Cohen, a chair in psychology at Cambridge. Simon was talking at the LSE, but he was my first ever supervisor at Cambridge. He was talking about his own specialism – autism and Asperger’s Spectrum conditions.

He mentioned Gary Mackinnon – and how despite hacking into the US top security systems Gary wasn’t (and isn’t) intinsically a bad man – Gary had left electronic post it notes every level he had breached for the benefit of the CIA.

Simon urged a reframing of autism as a condition which presented both disabilities but aptitudes. I feel we need a similar reframing and reforming of English dementia policy. I don’t wish to get into an aggressive discussion of social v medical model,  but the framing of our policy is poor. The term ‘post diagnostic support’ for many does not inspire confidence. What would inspire confidence is a practical infrastructure for enablement, comparable to what would be provided in rehabilitation following a physical disability.

We need to harness the opportunities of non-medics, but who have a huge amount to contribute – ranging from occupational therapists who can help with assistive technologies, or speech and language therapists who can help with communication or swallowing difficulties?

Dementia not being treated as seriously as cancer is a real problem. We can’t go on producing policy annually for the benefit of one Big Charity, producing one million, then two million, then three million “dementia friends”. We need to have clearly signposted choice points in enablement. Dementia policy needs a substantial consensus on care pathways – to give some certainty, but also to include some flexibility.

There needs to be some structure too. Society should be inclusive, but there are limitations to overegging the ‘dementia friendly communities’. Communities should be inclusive and accessible to all. You can’t “spot” a person with dementia in the community by a sticker on his head, or by the way he’s acting.

Research needs to be more balanced, including good quality research into care as well as the brilliant cellular and molecular research. But humility is needed to accept that all research is worthy in itself, irrespective of whether drug therapies are found.

People who say we don’t have to choose between cure and cure need to factor into their views that social care funding is on its knees. The NHS also has insufficient monies to perform optimally. All persons with dementia are entitled to the best quality healthcare, whether they’re in hospital, at home, in a hospice, or in  a care home. Cosying up to government and then complaining to fix dementia care is – no ifs or buts – weak leadership.

Access to the right quality care is important. Some of the work can be done by people with not much more than a NVQ in advising or supporting, but we do fundamentally need more properly trained clinical specialist nurses ensuring continuity of care and higher level care (e.g. in caring for those caring, palliative care, incontinence). One reason for this is a reluctance to consider dementia as a terminal illness – but the other sadly is selfish brutal politics. You unfortunately pay for what you get.

Above all, the lived experience of all people living with dementia and their closest is paramount. We don’t need to pour huge amounts of money into middle men into measuring this. We simply need to listen.

Project Fear in dementia policy: oranges are not the only fruit



In the run-up to the Scottish referendum, Alex Salmond used to tour the TV studios complaining about ‘Project Fear’, the term for how Westminster were arguing that the world would implode if Scotland became an independent country.

It is projected that a device of the ‘Stay in’ campaigns for the UK membership of the EU will be to argue that the UK will inextricably suffer if it leaves the UK, in areas ranging from the economy to defence policy.

A similar fear was used by Lord Andrew Lansley CBE, previous Conservative MP for South Cambridgeshire, arguing that without the Health and Social Care Act 2012 quality in the NHS would hugely suffer unless competition were at the vanguard of policy to drive up quality.

In fact, there was no convincing evidence even at the time that competition would drive up quality. It was noted at the time that competition was the device to shoo-horn private procurement of contracts everywhere, adding hugely to transaction costs, and impeding the development of clinical pathways purely out of clinical choice.

It is clear to me that ‘integration’ has been introduced in English policy, partly to throw people off the scent of Lansley, and partly to accompany Jeremy Hunt MP’s daily reminders of Mid Staffs and ‘rigorous inspection’ comprising his English NHS policy.

We, it is claimed, cannot afford to fund nurses training from a fair society – the fear makes us make nurses pay for their own education through withdrawal of bursaries. We cannot afford to pay for doctors – for fear of being unable to keep loan repayments for the private finance initiative. We cannot have safe staffing of hospitals due to ‘efficiency savings’, aka austerity.

The fear of Mid Staffs indeed has slowed down recruitment in Staffs due to the toxic publicity which ensued, and helped to accelerate implosion of the local health economy. It also has such a powerful odour that nothing ‘gives’ any more – whether it is the continuing failure of NHS Trusts daily now in ‘special measures’, or the lack of publication of NICE work on safe staffing. The NHS has clearly not been cured.

According to the Alzheimer’s Research UK charity, dementia is like an orange. This campaign is effective in breaking down one of the cardinal myths of dementia believed by many. The myth is that dementia is not caused by physical disease.

Watching an orange lose its segments though runs uneasily with the persistence of self and identity in people living with dementia. The disappearance of the orange does nothing I feel to portray the notion of living well with dementia: that it is possible to live well with dementia through design of the home and built environments, powerful local advocacy, cognitive stimulation therapy, assistive technologies, pet or animal therapy, ambient assisted living, well run residential care settings, indoor and outdoor avenues for creativity and the arts, attention to enhancing general physical health, and so on.

No – it’s the fear of a disappearing orange, that once you’re diagnosed with dementia you’re on a ‘devastating journey’ of doom. With the media talking incessantly about ‘dementia sufferers’, this does very little to stop the fear of a diagnosis through ramping up the stigma. But charities have their own agendas.

For as long as I can remember in the recent NHS and social care, people have been calling for proper funding, including for social care a much needed goal in itself, and also in part to mitigate against the delayed discharges incessantly called ‘bed blocking’ in the media. It happens that if my train is late it is unfair to call me a “platform blocker”. It has been known for years, and certain key figures could have campaigned on it had they so wished, that we need a proper system of care coordination, synchronous patient records, better workforce training, a coherent national system of specialist nurses, and so on. And yet the Alzheimer’s Society market their own #FixDementiaCare. Again it’s Project Fear. But charities have their own agendas.

Everywhere you look now there’s the overwhelming spectacle of fear in global policy. People with one of the 130 dementias invariably want to live with hope following their diagnosis, in addition to the hope of a possible cure (or better symptomatic neuropharmacology) for one or two of the dementias by 2025. Replacing this hope with fear is to them a massive disservice.


Is there more to influencing English dementia policy than putting up a poster?

Now is the time to influence the new English dementia strategy. It is critically important that the informed opinions of a diverse group of stakeholders are involved in framing this policy.

As with any strategy document, it will be hard to be in full control of all of the facts and evidence, but I feel it’s very important that the views of people living with dementia are taken into account. This is not just a case of ‘involving’ people living with dementia where possible. It’s a case of allowing people living with dementia to lead in framing the narrative. I am not going to suggest what these topics might be. I think, for people with more advanced dementia, it is going to be important to listen to the views of carers, both unpaid and paid. There is currently a huge policy problem that the needs of carers themselves are unaddressed. Carers need to be better supported in a more structured way.

There has also been a problem rumbling on years: that people who’ve received a diagnosis of dementia are not signposted to appropriate services. While the job description of ‘dementia adviser’ was mooted, I don’t feel this goes nearly enough. The ‘Dementia Challengers’ website, through amazing personal efforts from its one-person designer who has personal experience of this field, offers useful leads on support for making informed choices for living well with dementia. There is no escaping the overwhelming desire, also, to see a system of specialist nurses participating in a care system.  Also, we are not making use of the substantial expertise of social work professionals. For issues such as advocacy over capacity and liberty, there are certain people with dementia who need to have equitable access to such resources.

I am a card-carrying signatory that each person living with dementia has an unique experience. I’ve even written a book on it. But it might help people with certain types of dementia to be reassured that there are clinicians with expertise in dementias, and can promote certain support groups (such as the excellent PPA Support Group). We need any diagnosis of dementia to be correct. I too often hear of people being given a diagnosis from somewhere, on the basis of a very scanty work-up. I understand the concerns that too many people are being denied of a correct diagnosis, but we must ensure that this part of the system is adequately resourced. It is possible there will be a breakthrough in drug development for the dementias in the near future. I wish the people working on this well. I am sure that they will not wish resources to be diverted disproportionately into this away from current care, or making it appear that the current living well of people with dementia is less of a priority?

The ‘dementia friendly communities’ policy plank is potentially fruitful. However, I think we should address how we hear a lot from corporates, but not much, in this jurisdiction, from professionals and practitioners who could be useful members of that community. Under the current legislative framework, both in domestic and international law, the rules of equality and human rights apply. These are not issues only for the ivory towers. They have direct relevance to the person with younger onset dementia who finds himself in an unfair dismissal situation. They also have relevance to the person in the badly run care home who feels (s) he is subject to “degrading treatment”.  Access to the law has been a real setback for the current Government, as has been access to see your GP. These create the perfect storm for a ‘dementia unfriendly community’.

I am the last person to denigrate the efforts of the vast army of people putting up posters, signing petitions, or handing out leaflets, in the name of ‘dementia awareness’. There is a huge danger that these posters, petitions and leaflets send out a message of ‘mission accomplished’, if there is no follow up? But I am likewise a bit burnt that the fact that #G7dementia and “Prime Minister’s Dementia Challenge” appeared from nowhere, and had the effect of threatening plurality in the dementia third sector.  I am concerned about this, and now is the time to make views known to the Baroness Sally Greengross, Chair of the All Party Parliamentary Group, Prof Alistair Burns, the clinical lead for dementia in England, and Prof Martin Rossor, lead for research for dementia for NIHR.