Day: June 7, 2015

Dementia Friends in Canada – showing there is a “wrong type of education”

Shibley Rahman 2 Comments

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.

‘Self help’ is a good thing in dementia care, but it is only really part of the picture

Shibley Rahman 0 Comments

cogs

Rather than fostering mutualism, Liz Kendall is at risk of producing a policy void through nihilism. Just like pets are not just for christmas, entitlements are not just for employees. A look at the reform of public services, as Liz has done brilliantly, is especially to the English dementia policy debate, and as such it’s hard to argue against ‘quality, flexibility and choice’ per se.

But take the example of people sitting in chairs with the TV blairing out and a noisy hoover on in a care home. These residents of the care home probably can’t be said to have choice over their local environment, and this is clearly not ‘good care’ whoever provides it. If the same situation were on an acute hospital ward in the NHS, it wouldn’t be great either.

Perhaps the dichotomy between ‘left’ and ‘right’ is a false one in politics, in that both private businesses and state services would possibly agree it’s hard to provide the best services on an inadequate budget. But this is important for personal-held budgets too. And choice is somewhat illusory, if the service is essentially the same, for example treatment of a leg ulcer using evidence-based antibiotics on a NHS hospital ward or private nursing home.

I would like to feel that ‘self help’ is a political shorthand. Overall, the policy ambition that people can know about their own health and wellbeing through appropriate information, have some control or choice over their management, might be able to avoid hospital admission through anticipatory personal care planning, all makes intuitive sense to many.

The reality does deserve thinking about anyway. Many are essentially pumping the line still that there is no alternative, and indeed there might not be an alternative if an English government advocates reading lips and no more taxes until 2020. Labour deputy hopeful Rushanara Ali MP managed somehow to ramrod the word ‘competition’ in an answer on devolution on BBC Any Questions on Friday, but competition has not always necessarily helped.

What we really wanted, and we are finally getting from the care regulators, led by the Care Quality Commission, is the sharing of good practice. Too often any good practice has found itself isolated and not publicised. Sharing of information is essential not only for breaking down silos in care, such as health, mental or social, but also from a practical point of view in effecting safeguarding, for example.

But a race to the bottom as to who can offer lowest taxes is clearly not the solution if it translates into who can offer the worst public services. Something’s gotta give. And, even if you do subscribe to some identity of the left, it must be a concern if the left does not encourage peer support networks, or enable professional relationships, whether that may be a dementia advisor, dementia support worker, or clinical specialist nurse such as an Admiral nurse.

Self help is not necessarily THE solution if expertise is required to anticipate low bone density due to a mélange of risk factors which might predispose someone to a fall at home, such as poor diet or low sunlight. It cannot be the solution if people with dementia, and closest ones including family caregivers, aren’t given guidance on coping strategies. The demands of carers are huge. Many of us would not wish to call these cumulating in a ‘burden’, somewhat detracting from the value of carers, but the health and wellbeing of the carer can directly impact upon the health and wellbeing of a person with dementia.

If we have problems in assessing ‘quality’ in public services (and we do), we are likely to have problems in assessing quality in self-care. No doubt there can be clever algorithms in ‘activation’ of self care, but many still feel themselves relatively undertrained in self-carer. Many unpaid family carers do not indeed think themselves as ‘carers’, despite knowing full well their enormous care commitments, and feel that they have been plunged into the deep end into a rôle they didn’t particularly anticipate at their time of life.

One of the most potent criticisms of the ‘Big Society’ was that in fact it was a cover ‘for cutting the State’ – and we can see how this might have arisen as the timing of the Big Society was virtually simultaneous as the Cameron-push for austerity in light of the global financial crash. But likewise, there’s a lot to commend in self-care, which is at risk of being toxified by continued cuts in public services.

Public services, even if outsourced, tend to be reluctant in assessment of ‘continued performance’, and yet this takes time and resources. Giving a person with dementia or a proxy a budget, and expecting him/her just ‘to get on with it’, cannot be the solution. But relationships-centred care is where much thrust rightly is being placed in English dementia policy, showcasing integrated person-centred approaches (and we can argue for a long time on the exact meaning of this).

But I feel that ‘self help’, while a well intended shorthand, is perhaps missing a big problem identified by Phillip Blond. That individualism can be promoted by converting a contract with a large provider (be it public or private, e.g. one of the private oligopolies) into lots of social contracts with other stakeholders. Not all “positive” choice is exerted through a budget or market economics, and the sooner politicians of all purported shades realise this, the better?