How can we tell whether #NHSChangeDay “works” for dementia?

A number of different jurisdictions do a form of “Change Day” for healthcare. The NHS Change Day will take place this year on Wednesday 11th March 2015.

This year, Andy Tysoe will be spearheading efforts for a ‘change’ in how the general public perceive dementia – please do support @DementiaBoy and #DementiaDo.

How you measure outcomes as well as short term benefits for NHS Change Day is to be itself an outcome of a study shortly. But I do find interesting the basic issue of how social movements are deemed to have had any effect or not.

I took as a useful starting point this document.

This is a graduate thesis from 2008 entitled, “Arenas of social movement outcomes: accounting for political, cultural, and social outcomes of three land-use social movements” by Brandon C. Hofstedt at Iowa State University.

The actual number of pledges in itself is clearly not the factor. “Targets” have been pervasive in English dementia policy wherever you look, such as the number of people enrolled into research studies, or the number of new diagnoses of dementia. But, coupled with the fact that shrewd people can effectively ‘game’ such metrics, together with the more underlying issue that quantity does not necessarily equate to policy, the number of pledges about dementia is not THE measure.

Last year, there was a very successful ‘Whose Shoes’ campaign with Ken Howard, living with dementia, which explained what it was like to receive a diagnosis of dementia, and what it was like to live with that diagnosis. But was that in itself a game changer? The initiative certainly did open many people’s eyes, and it was extremely well received; but did it change everyday practice in the NHS?

It is well known that the disclosure of dementia in the NHS can be extremely poorly done. One aspect is the rushed nature of the appointment for that disclosure, as well as the lack of supporting follow-up. But, as Chris Roberts, living with a mixed vascular dementia and Alzheimer’s disease, remarks, a more systematic imparting of the diagnosis, perhaps divided up into pre-disclosure, disclosure, post-disclosure parts might be more helpful. This is, in fact, the structure adopted for the disclosure of a diagnosis of Huntington’s disease.

The diagram below is taken from the thesis above.


We know that social movements all have lifespans of their own, and it can take a long time after the existence of a social movement for the effects of that social movement to become known.

But even in the lifetime of the recent NHS Change Day campaigns on dementia it is worth examining whether there has been a fundamental change in dynamics in political, social, or cultural domains.

In terms of global policy, this month the Alzheimer’s Disease International and World Health Organization, consistent with previous policy strands from the G7dementia and World Dementia Council, will be fleshing out the key tranches in policy, which are in prevention and the search for a cure. In fact, policy, including social care, for people living well with dementia currently has not been given as high a priority, it can be argued. Despite devastating social care cuts in England, the Prime Minister recently boasted of how England should be known as “the best place to receive a dementia diagnosis”.

Social capital is essentially about looking at the power of individuals relate to each other, and cultural domains reinforces this notion, looking at what ‘cultural norms’ are. “Dementia Friends” has so far cost a few millions, but some believe it is money well spent for offering the general public basic information awareness of what the dementias are. Such information, it is argued, is that the first step to breaking down stigma and discrimination.

But no initiative on its own, even with the backing of ‘Dementia Friends’, can be expected to be wholly transformative in changing cultural ideas around.

That is where, perhaps, the particular strength of Andy Tysoe’s present campaign lies for NHS Change Day. The idea is that by gathering lots of ‘backers’ to his pledge, Andy can bring about a social movement encouraging people to think differently about dementia; and lots of pledges can make NHS Change Day a powerful force.

This indeed is formidable, but we should all be concerned if nothing fundamentally changes. There is only one person living well with dementia on the World Dementia Council, not even democratically elected on the World Dementia Council despite all the campaigning; and, there still remains the 30 minute rushed consultation in busy outpatients to explain the life changing diagnosis of dementia.

And you know the rest.

Building ‘cognitive ramps’ for NHS Change Day

Andy Tysoe, @dementiaboy, is on a remarkably important mission.

“Hi, my name is Andy Tysoe and I’m a dementia nurse, based at the Countess of Chester Hospital and campaign lead for NHS Change Day #dementiaDO. Part of my clinical role is to help people affected by dementia through the challenge of an acute hospital stay and also to deliver dementia awareness sessions to the staff who work there.”

On Wednesday 11 March 2015, local activities in #NHSChangeDay will take place to recognise the positive changes that have resulted due to the actions people have taken.

And Andy includes a powerful pledge.

“We need to build our cognitive ramps next to physical ones to assist people with cognitive (thinking) disabilities into our public services and buildings, and for me, carers are a crucial part of those ramps not just during visiting time either!”

Here’s the rub.

“Parity of esteem” is currently a big deal in the NHS, to put mental health and physical health on an equal footing. As provided by NHS England,

“The Mandate from the Government to NHS England instructs us to put mental health on a par with physical health, and to close the health gap between people with mental health problems and the population as a whole. But this is only our starting point: we need to go further by delivering ‘parity of esteem’ and commissioning services that are truly person centered in a way that addresses some of the profound inequalities of access to high quality care in England.”

The English law has created this parity of esteem in discrimination offences too. This is from my book to be published by Jessica Kingsley Publishers in July 2015.

From my book

In a seminal article by “The Network Secrets of Great Change Agents” by Julie Battilana and Tiziana Casciaro in the Harvard Business Review, the authors set out the properties of people in networks and how they can effect change.

People living with dementia, caregivers, nurses, healthcare assistants, doctors, and assorted members of the community are all “actors” in a network.

Most social networks exhibit “clusterability”: that is, they comprise groups of individuals who are tightly connected to each other. This can be reinforced by powerful hierarchies, such as in the NHS.

The power of Andy Tysoe, I feel, as a “change agent”, comes from his ability to bridge the NHS with the people it purports to care for:

“People who bridged disconnected groups and individuals were more effective at implementing dramatic reforms, while those with cohesive networks were better at instituting minor changes.”

(Battiliana and Casciaro)

Implementation of a radical change within any organisation can be conceptualised as an exercise in “social influence”, defined as the alteration of an attitude or behavior by one actor in response to another actor’s actions.

Network research has converged upon the notion that the degree of “structural closure” in a network, defined as the extent to which an actor’s network contacts are connected to one another, has important implications for generating novel ideas and exercising social influence. People in positions of power and authority can are not the only people who are influential, sometimes.

Cohesive ties unfortunately can be a source of rigidity that hinders the coordination of complex organisational tasks.

I have been particularly impressed by how Andy has taken to Twitter to lead on his change. This plays on one of the fundamental features of networks. Consider, for example, in a phone network, where the primary transaction is making or receiving calls, anyone with a network phone number can call any other person with a network phone number.

There has been growing recognition in the literature too, that “size isn’t everything”. As regards this, one cannot but help to be impressed by Andy’s conduct with people he’s encountered. Network members can, indeed, develop a reputation for honesty, trustworthiness, and dependability.

This helps Andy see about initiatives in the wider community, such as ‘dementia friendly checkouts’.

dementia friendly till

In “The new era of thinking and practice in change and transformation” from NHSIQ, authors Helen Bevan and Steve Fairman propose characteristics of “The Edge”:

“The edge as a virtual place for building relationships and networks; this is about purposefully positioning change agents at the edge of the organisation, enabling them to interface more easily with others, both inside and outside of the organisation, simultaneously. From this perspective, we see change agents as hyperconnectors, building relationships with other change agents and innovators, utilising open innovation principles to make social connections, pulling knowledge into the organisation, making sense of it and sharing it to speed up change.

The edge as a way of being as a change agent; choosing as a leader of change to operate at ‘the edge’, leading through networks and social connection, looking outwards to the wider world of knowledge, relationships and networks as well as inwards, influencing though the processes of organisational life.”

One of Andy’s main missions is to make the navigation of a person with later stages of dementia more easy through the system, with the help of caregivers in the formulation of care plans. This is very much in keeping with the RCN/Carers Trust “Triangle of Care” (2013).

Andy, like me, is supporting “John’s Campaign“: “the right for carers (particularly family) to stay with a person with dementia if they are admitted to hospital – 24/7 if necessary.” (twitter @JohnCampaign)

A lot can go wrong if such a person with dementia is left bewildered in acute hospital, as the totemic video of “Barbara’s Story” shows.

Leading from the edge has parallels in other sectors. For example, Danone introduced “discovery learning” in business education. This “edgy” method was introduced to facilitate this voyage of self-discovery, exposing “to experiences that are surprising or challenging”

By being at “The Edge”, Andy is in an unique position to help with the aims of raising ‘dementia awareness’, on top of the current “Dementia Friends” initiative, in meeting outcomes of tier 1 of the Health Education England initiative.

This change leadership, of course, is all a far cry from Machiavelli; who is reputed to have famously said that it is better for leaders to be feared than to be loved.

In contrast, in summary, I strongly commend to you Andy Tysoe, for #NHSChangeDay 2015 (#DementiaDo) to bring about awareness of dementia, to support “John’s Campaign”, and to stop discrimination against people with dementia.


Bonetto, T. and Irwin, L. (2013), Danone Leading Edge program – a leadership odyssey, EFMD Excellence in Practice Awards 2013: Executive Summary.