#WorldAlzheimersDay – who is protecting whom?

Assessing risk is a critical part of English dementia policy at all levels. I again found myself talking about risk as I saw responses to World Alzheimer’s Day which was yesterday on September 22nd 2015.

I don’t especially like the term ‘wandering’ for people with dementia. This term, like ‘challenging behaviours’ has become seemingly legitimised through the hundreds of papers on it in the scientific press, and the grants no doubt equivalent to hundreds of thousands of dollars probably. I think the term, intentionally or not, attributes blame. And as I moot in the tweet below, this is potentially a problem, especially one considers that a dementia charity should not ideally be fundraising out of sheer fear.

Tweet 1

Don’t get me wrong. I think charities have an incredibly important part to play, and they do, in educating people about dementia; and generally ‘raising awareness’ howeverso defined. Take for example this helpful tweet from the Alzheimer’s Disease International containing a relevant infographic about the scale of the dementia epidemiology.


I had a hunch that something was very awry about yesterday when my colleague Simon Denegri tweeted something which caught my eye. Let me introduce you to Simon. He’s Chair, INVOLVE, NIHR National Director for Patients and the Public in Research, and, importantly, a nice guy.

The tweet, and the main subject of the research, is pretty self explanatory in fact.


The point Simon raises is worth thinking about, I feel. Is updating the epidemiology of dementia every year, nay every month, or even every week, an effective way of genuinely raising public awareness – or is it rather a lazy way to campaign on it? Obviously, playing devil’s advocate, one should argue that this main issue should be raised until something happens, but with a cure for dementia a long way distant it seems that this option is not likely.

So how about offering some solution instead? In other words, having scoped the problem, why not offer hope instead of fear through the huge volume of research in improving quality of life for people living with dementia and carers. Here’s the thing: there are 850,000 people living with dementia at the moment currently, and there’s got to be something in it for them with all this coverage.

I call fixating on the ‘tsunami’, ‘time bomb’ or ‘tidal wave’ “the shock doctrine” to make you want to dig into your deep pockets, to make you donate to a dementia charity. BUT  – with social care funding on its knees, having not been ringfenced since 2010 – is this actually a luxurious response to a rather serious immediate problem? Long before #DementiaWords ‘got sexy’, I presented my poster (PO124) on the hyperbolic language used in the G8dementia proceedings, in the Alzheimer Europe 2014 conference.

Here’s the rub.

Jeremy Hughes and the Alzheimer’s Society have been hugely successful with the ‘Dementia Friends’ campaign, which has seen a roll-out of information sessions on the basics of dementia for the whole country. Yesterday was a good opportunity to talk about that.

Dementia Friends

But meanwhile Alzheimer’s Research UK, which indeed does formidable work for the research infrastructure on dementias in the UK, rolled out this in a blogpost yesterday. The phraseology of the remark, “At Alzheimer’s Research UK, our hope is for a different kind of future, one where future generations will be free of this life-shattering condition”, is the opposite to one of the central messages of Dementia Friends, that ‘it is possible to live well with dementia’.


I don’t, of course, want to downplay the huge significance of the disclosure of the diagnosis of dementia as a life event for all those involved, not least the direct recipient of that diagnosis.

Sadly, we’ve been here before. All of these came to the fore when Richard Taylor PhD, one of the founding members of Dementia Alliance International, (DAI), pleaded, “Stop using stigma to raise money for us”, in the Alzheimer’s Disease Conference in 2014 in Puerto Rico. Actually, the DAI, a group run by people living with dementia, has been working with Alzheimer’s Disease International to make things much better, in no small part at all due to the gigantic efforts of its current Chair Kate Swaffer (@KateSwaffer).

All of this leads to me wonder who exactly is protecting whom? I wouldn’t go so far as to say that the public needs protecting from large dementia charities, but the sway they hold on policy is not inconsiderable; whether this is on the cure v care resource allocation in dementia, or whether there should be specialist nurses as well as dementia advisors (as I argued this year both in the ADI and Alzheimer Europe conferences).

There’s no doubt, as regards safeguarding issues, that people with dementia need to protected from risk where it is proportionate to do so. As I have long argued, you need to embrace risk to live well with dementia. But it is worth thinking about on whose part we are negotiating risk? Damian Murphy’s excellent blogpost yesterday emphasises how we cannot necessarily assume that carers and persons with dementia have the same (or even similar) viewpoints: this is directly relevant, say, on whether a person with dementia with a carer gets a GPS tracking device?  (I duly anticipate and expect Damian’s contribution here, by the way, to be seminal one, by the way.)

A long time ago when I was reading some of the management literature, I was really impressed by a paper to which Prof Michael Porter contributed on strategy and society (co-author Mark Kramer) in the Harvard Business Review.

Mark in a slide once summarised four crucial tenets of observing this re-articulated corporate social responsibility thus.


I, for one, would like to see all campaigning done by the dementia charities seen through this prism; and also bearing in mind the clinical, if not societal, question cui bono?



Fighting to make friends. On the dissonance in donation to dementia charities.

By 2006, Bush had convinced himself that the invasion of Iraq was not a mistake.

“I’ve never been more convinced that the decisions I made are the right decisions,” he told a delegation of conservative columnists.

If you wish to believe that there is a war against dementia, you will go round seeking information to support that belief.

See for example the information extract below from an ‘infographic‘.

infographic extract

This is known as a ‘confirmation bias‘.

A related phenomenon ‘cognitive dissonance‘ is the excessive mental stress and discomfort experienced by an individual who holds two or more contradictory beliefs, ideas, and/or values at the same time. This stress and discomfort may also arise within an individual who holds a belief and performs a contradictory action or reaction.

The magnitude of dissonance produced by two conflicting cognitions or actions (as well as the subsequent psychological distress) is likely to depend on the importance of cognitions. The more elements that are personally valued, the greater the magnitude of the dissonant relationship will be.

Cognitive dissonance theory is founded on the assumption that individuals seek consistency between their expectations and their reality.

Because of this, people engage in a process called dissonance reduction to bring their cognitions and actions in line with one another. This creation of uniformity allows for a lessening of psychological tension and distress.

And it’s been a popular tool in political messaging.

cognitive dissonance

Leon Festinger’s theory of cognitive dissonance focuses on how humans strive for internal consistency.

A nice example of cognitive dissonance was recently provided by Alzheimer’s Australia:

recent dissonance

According to Festinger, dissonance reduction can be achieved in three ways:

Attitude: “I am fighting a war against dementia and will avoid any unpleasant battles.”
Behaviour: I will donate money to further the fight against unfriendly communities.

1. Change behaviour/cognition
(Ex: “I will simply not donate any money.”)

2. Justify behaviour/cognition by changing the conflicting cognition
(Ex: “I’m allowed to donate money to take part in the fight every once in a while.“)

3. Justify behaviour/cognition by adding new cognitions
(Ex: “I’ll plan a trip to the cinema to take my mind off the fight against dementia.“)

There are various paradigms used to explore cognitive dissonance further.

Dissonance is aroused whenever individuals voluntarily engage in an unpleasant activity to achieve some desired goal. Dissonance can be reduced by exaggerating the desirability of the goal. Here an unpleasant activity might be reducing your bank balance to support the fight against dementia.

Aronson and Mills (1956) had individuals undergo a severe or mild “initiation” in order to become a member of a group. In the severe-initiation condition, the individuals engaged in an embarrassing activity. The group they joined turned out to be very dull and boring. The individuals in the severe-initiation condition evaluated the group as more interesting than the individuals in the mild-initiation condition.
All of the above paradigms continue to be used in fruitful research.

And cognitive dissonance can also act on the level where you make a donation, in your fight against dementia to establish a dementia-friendly community, but you subsequently have a ‘negative cognition’.

In a paper called “Donor Dissonance”: Applying Cognitive Dissonance Theory to Charitable Giving Behavior and Donor Relations” Mark Ward, Sr. from Clemson University helpfully looks at this phenomenon. In a nutshell, trying to reduce the amount of dissonance might make it more likely to donate to that charity in future.

Ward argues that “the more that post-decision dissonance is heightened by the importance of the issue at hand—and the longer the delay in deciding among equally appealing alternatives or the greater the difficulty of reversing the decision—the more individuals will have a need for reassurance.”

Quoting the work of Sweeney and colleagues (Sweeney et al., 2000), they say a fruitful avenue for exploration might be for fundraisers in charities to investigate the following affective and cognitive concerns among their major donors as follows.

Emotional: A person’s psychological discomfort subsequent to the donation decision
After I made this donation:
I was in despair
I resented it
I felt disappointed with myself I felt scared
I felt hollow
I felt angry
I felt uneasy
I felt I’d let myself down
I felt annoyed
I felt frustrated
I was in pain
I felt depressed
I felt furious with myself
I felt sick
I was in agony

Wisdom of donation: A person’s recognition after the donation has been made that the charity may not have needed the funds or that the person may not have selected the appropriate charity
I wonder:
if the charity really needed this money
if I should have donated anything at all
if I have made the right choice of donation amount if I have done the right thing in making this donation.

Concern over decision: A person’s recognition after the donation has been made that they may have been influenced against their own beliefs by the charity
After I bought this product I wondered:
if I’d been fooled
if they had spun me a line
if there was something wrong with the charity.

Clearly there’s a lot to examine there if they want to!

Some of it may lead to more effective manipulation of emotions by charities to fund-raise.


Sweeney, J. C., Hausknect, D., & Soutar, G. N. (2000). Cognitive dissonance after purchase: A multidimensional scale. Psychology & Marketing, 17(5), 369–385.