Chris Roberts, who was diagnosed with mixed vascular and Alzheimer’s dementia in his late 40s, made a very focused comment yesterday in conversation with Angela Rippon at the annual Alzheimer’s Show in London.
Chris argued that we can all ‘be aware’, but “awareness is very different from education”.
Coincidentally, I had been privately been discussing with Angela Rippon before the session how struck I am that people around the world found the Dementia Friends programme groundbreaking.
I am extremely proud to be a ‘Dementia Friends Champion’ in England. I run ‘Dementia Friends’ sessions for the general public to the best of my ability, and the programme, an initiative from the Alzheimer’s Society and Public Health England, is good fun to be involved with, for me.
There’ve been various attempts at raising awareness about dementia, some with varying degrees of success. I remember judging one abstract for the Alzheimer’s Disease International conference we’ve just had in April 2015, where one group had released some purple balloons in a town scale.
This reminds me of the famous Lynton Crosby strategy of the “dead cat”.
As Boris Johnson MP describes about this strategy, “”The key point, says my Australian friend, is that everyone will shout ‘Jeez, mate, there’s a dead cat on the table!’; in other words they will be talking about the dead cat, the thing you want them to talk about, and they will not be talking about the issue that has been causing you so much grief.”
According to Health Minister Rona Ambrose said the goal is to reduce stigma, “so that when (people with dementia) go to the bank or the corner store, people understand to be a little more patient.”
Watch the promotional video for yourself.
Charities have a long track record of being engaging professional advertising agencies to get their message across. Here in England, it was reported that, “PHE will invest up to £4 million a year until 2014/15 and expects significant additional funding from partnership marketing. “The scale of the challenge demands far greater ubiquity than we alone can fund,” a PHE spokeswoman said.”
The allocation of scarce resources in itself is an important policy question, in the light of cuts in social care, and accusations of a relatively impoverished infrastructure of dementia advisors, dementia support workers and clinical specialist nurses including Admiral nurses.
The presenter of the Canadian video walks into a darkly lit theatre, in keeping with the usual ‘shock doctrine’ tactics which are quite common in such pitches.
The presenter then says, “It’s repeating the same word or phrase. It’s repeating the same word or phrase. It’s repeating the same…”
But this is problematic territory, as the lines are presented as if to be ‘mildly amusing’. When this approach was last used at the Sunday Night at the Palladium, in a more extreme version, it went down like a lead balloon.
A comic there said: “I think I am losing my memory. Do you ever think you have Alzheimer’s? Do you do that thing when you walk into a room and go ‘what did I come into this room for?’ Open up a fridge, and go into soft focus. And close the fridge and go ‘what did I open the fridge for?’ Driving my car and thinking where am I going. I was looking for something in the fridge.”
And, after a few minutes, the comic added: “Have I done the Alzheimer’s joke?”
Two of the symptoms he presents are symptoms which could be reasonably expected in people with Alzheimer’s disease, the most common form of dementia globally, presenting in the majority with problems with learning and memory. These symptoms are word finding difficulties, or not knowing where you are.
But other symptoms include “not being dressed for the weather”, “pacing up and down”, or “even using expletives such as “shit”, according to the presenter”. These symptoms are certainly not common at all for people living with any type of dementia early on.
I have had many thousands of conversations with people living with dementia, and use of profanity by either party has been negligible.
Sometimes some persons with the behavioural variant of frontotemporal dementia can be disinhibited; so in cognitive testing you would occasionally get the reply ‘sun, sea, sex, sangria, suspenders’ when asking someone to name as many words as possible beginning with S. This has been reported elsewhere.
But the interesting aspect of this for me is how certain people with dementia can perform very well on this test known as “verbal fluency”, often at a superior level to people without dementia.
The presenter finally refers to some people not even uttering a word. Such mutism is not specific to dementia, and tends to, when it occurs, in far more progressed dementias, not in the vast majority of people with dementia; and bear in mind there are 47 million people living with dementia in the world currently, it is thought from the ADI recent work.
Helga Rohra, pioneer advocate as Chair of the European Persons with Dementia, herself living with dementia, refers specifically to the “faces of dementia”, rather than the ‘stages’ of dementia.
But this episode with the Canadian video shows that there can be a wrong type of education. The presenter then remarks on the need to know about dementia, hence the campaign of ‘Dementia Friends’ in Canada from the Alzheimer Society of Canada.
I am not particularly ‘angry’ that this has happened. It’s obvious to me that this initiative from Canada must be strongly supported by people wishing to break down stigma and discrimination towards our fellow citizens with dementia around the world.
I am a bit disappointed that all of this could have been easily avoided simply by involving a ‘focus group’ of people living with dementia at all stages of development of this project; and possibly this film is a result of a vague instruction to a marketing agency.
But I feel that it would be worth thinking about tweaking the video in subsequent revisions of the promotion of this programme, to provide a more accurate representation of dementia.