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.