The force awakens: the case for neurodiversity in living with a dementia

force awakens

The legal considerations of the case of framing a global response as ‘dementia friendly communities’ are not insubstantial.

‘Dementia friendly communities’, as such, were “sold” in England as an army of new ‘dementia friends’, emulating the caravan befriending of Japan, producing pledges in a mass social movement about making life better for people with dementia.

But it turns out it is more than that.

The communities are intended to promote independent living, by being inclusive and accessible. They therefore fall under the remit of equality. But the undercurrent of this is that people living with dementia need to be pulled up to an equal standard, irrespective of their type of cognitive deficits which characterise the dementia.

This is a double-edged sword. Under the ‘social model of disability’, people living with dementia living with cognitive deficits can be equipped with cognitive aids to help them overcome impairments resulting from their cognitive disability.

But this incompletely addresses diversity of thought amongst people diagnosed with dementia. Diversity can be embraced in a positive way by employers with the right mindset. For example, people with memory problems can be re-employed in a job where memory is not a big component or where memory aids enable the job to be done.

The label of ‘dementia’ has been argued as useful in that ‘it unlocks services’. The numerous stories of people who’ve had their diagnosis changed from ‘dementia’ to ‘minimal cognitive impairment’, with disastrous personal reaction, are to some extent testament to this.

But IF it is the case that people have caused this effectively by living with a dementia better some serious scrutiny should be put into whether the medical profession in effect punishing people for living better with a chronic condition.

A  concept, however, has emerged called the ‘affirmation model of disability’, which is described in this academic paper.

“Graby (2015) suggests that John Swain and Sally French’s (2000) ‘affirmation model of disability’ may be useful in taking this project forward, in which ‘disabled individuals assert a positive identity, not only in being disabled, but also being impaired. In affirming a positive identity of being impaired, disabled people are actively repudiating the dominant value of normality’ (Swain and French 2000, 578). The proposition from the neurodiversity movement is that we should reclaim and redefine ‘impairment’, in the same way as the first disability rights activists challenged the meaning of ‘disability’.”

This takes dementia, as a disability, into a new reframed arena of activism.

The same paper,

“It is our hope that building solidarity across experiences of marginalisation and disablement can move us beyond defining how we each individually deviate from the norm. At a time of increased psychiatrisation coupled with aggressive and devastating public spending cuts and government policies, we need to think collectively about how these processes affect us all.”

There are some people who find themselves, however, disabled by their diagnosis. This in policy is not drawn attention to for the correct fear of further exacerbating the stigma and prejudice surrounding dementia.

But dementia finds itself in the same and different place to other disabilities at the same time.

Dementia and other disabilities share the UN sustainable goals, similar to the UN millennium goals.

Sustainable Development Goals_E_Final sizes

But on the hand people living with dementia around the world have experienced distress from austerity, due to the global financial crash of investment markets. In England, this has witnessed the collapse of the Independent Living Fund, while global investment goes into finding a pharmacological cure for dementia.

Being friendly to people around the world, living with dementia, was a well intended aim, for loneliness and social isolation frequently accompany the diagnosis of dementia (for the direct recipients of the diagnosis and carers as well).

However, it is clear that the 47 million people living with dementia have set their sights much higher.

The force awakens.



In the “war against dementia”, where are our “boots on the ground”?


In my quest for knowledge about what is working and what isn’t working in dementia service provision, I often ask Agnes Houston MBE for advice.

“Scottish allied health professionals are brilliant!”, she once said.

Agnes, herself living with dementia, is in a good position to evaluate how good service provision has been in Scotland. This brings up to date the old adage from Sir William Osler, “Always listen to your patient“.

Of course, things have moved once since Osler’s day. Patients using the NHS when they’re ill also aspire to live in healthier times as a person in the community.

In September 2012 the organisation of International Chief Health Professions Officers (ICHPO) provided an agreed definition of an Allied Health Professionals:

“Allied Health Professions are a distinct group of health professionals who apply their expertise to prevent disease transmission, diagnose, treat and rehabilitate people of all ages and all specialities. Together with a range of technical and support staff they may deliver direct patient care, rehabilitation, treatment, diagnostics and health improvement interventions to restore and maintain optimal physical, sensory, psychological, cognitive and social functions.”

After my own coma due to meningitis in the summer of 2007, I could not walk or talk. I could not make a cup of tea, let alone plan a shopping trip in a local supermarket. With the help of a superb physiotherapist and occupational therapist in the neurorehabilitation ward of the National Hospital for Neurology and Neurosurgery, I was able to relearn from scratch these skills. I had in fact been a junior doctor there.

I think it’s easy to get wound up in processes in policy to do with allied health professionals, and only to view them within the never-ending prism of ‘vanguards’ or ‘new models of care’, but anyone with reasonable clinical experience will know of their pivotal importance in healthcare.

That is not to say we should overlook the opportunity of how they can operate in the community, including primary care settings, hospitals, hospices, and care homes, best to promote continuity of care and wellbeing. The driving force for this might indeed be reducing the ‘financial gap’, but my perspective is very much on reducing the ‘wellbeing gap’.

Today brought very conflicting news internationally. On the one hand, the UK Government were able to secure from parliament a mandate for bombing ‘ISIS’/Daesh in Syria with military air strikes. On the other hand, it was the International Day for Disabilities in celebration of enabling people. I have written about the latter issue here already.

At first, it might seem the military analogy of dementia might have a lot going for it. For example, a Doctor from a distance might authorise a prescription of a cholinesterase inhibitor, at a comparable distance in the air for a military strike. It is not clear what the borders of dementia are, in the same way geographical boundaries in Iraq/Syria have been argued to be poorly described. There is a need to form a geographical coalition to defeat Daesh, in the same way that countries around the world, including the G7, are “defeating dementia”.

But are the foot soldiers, indeed, “allied health professionals”? If the enemy is dementia, these foot soldiers in the absence of an outright cure thus far or effective sustainable long term treatment are potentially encouraging people to co-habit with the enemy.

So there are clearly limitations with the military analogy.

But the foot soldiers can give people with dementia the ‘tools’ to function well, such as access to exercise or assistive technologies, broadly in keeping with a reablement or rehabilitative approach for any long term condition; or they may come in the form of Admiral nurses to empower carers with coping strategies.

So what’s the problem?

We don’t have enough of these ‘boots on the ground’ for dementia.