Category Archives: culture

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A single cure is not the only hope for living better with dementia

Many people living with dementia, having been told to expect the worst sometimes from some professionals, find themselves surprised when they’ve found they’ve met some nice people after diagnosis, and learnt new things.

And guess what?

You do not have to be religious to have hopes. Addressing emotional and physical needs are important for meeting hopes. If we talk about ‘burden’ all the time, we see the price and cost of everything and the value of nothing, to lean on a saying from Oscar Wilde. But, seriously, if you have problems with engaging with the notion of ‘hope’, pretend temporarily it’s “quality improvement”.

Hopes have to be meaningful. A hope for a better life cannot mean somebody inflicting on you ‘bingo’ or activities unless you happen to be interested in those activities in that particular time or place.

Hope might be wanting friends and family to be with you following a diagnosis of probable dementia.

Hope might be being inspired by people you respect. Here are Helga Rohra, Chair of the European Persons with Dementia group for @AlzheimerEurope, and Chris Roberts, Board Member of Dementia Alliance International (and Dementia Friends Champion, for example), who both live with dementia and spoke last week at the ADI international conference.

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People’s hopes differ, but finding out what people’s hopes are is important.  To be valued, whether in employment or not, or in a loving relationship, is surely essential.

We recently stayed with Kate Swaffer, Pete and Boris up in Adelaide hills. I commend to you Kate’s recent post on living well with dementia, which concluded as follows:

“Feel free to call yourself or your loved one with dementia a sufferer, privately. It is disrespectful to feel so free to publicly label all of us living with dementia as sufferers. It seems unreasonable to me, that others get upset that some of us feel like we can live well or better, even with dementia. And this does not mean there are not many times where we do suffer, but to always label us all in that way, as if that is the experience of everyone, is unfair and disrespectful. Let those of us wanting to, live with enablement and hope.”

Life is complicated and unpredictable. I’ve long felt that anything can happen at any time.

I have real concerns about clinicians pinning all hope on a “cure”. A cure might bring hope, if properly defined; but we have to be able to say what a cure might look like, for whom. But there is no doubt that a cure perhaps to stop the build up any causative toxic agents in dementia in the brain would be great if appropriately timed, and if safe, and collaboration I feel is a ‘must’ for this hope to have lift off.

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Moving the target from the “cure” to give people hope living with dementia, whichever one of the hundred of dementias that is, is not “giving up”. It is a fundamental reshifting of the narrative from the ‘managed decline’ philosophy of ‘prescribed disengagement‘ (as described by Kate Swaffer) to a genuine attempt to meet people’s beliefs, concerns and expectations.

An expectation might be for an employer to be sympathetic that a person who has just received a diagnosis of dementia is not wildly different to how he or she was just a few days ago.

That is, corporates, resources permitting, should be able to embrace ‘thought diversity’, and find a rôle for an employee which is most suited to someone’s cognitive abilities.

This is the fundamental aim of rehabilitation, and using an understanding of disAbilities to give control to people’s lives.

This is what I encountered many times in the Alzheimer’s Disease International conference last week at Perth, Western Australia, in discussions of “agency”. Mick Carmody is a person living with dementia from Queensland, Western Australia, who I have seen first hand to have benefitting hugely from encouragement from the Dementia Alliance International, a group of people living with dementia.

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With many people with dementia facing an incomplete recollection of events, sometimes relating to himself or herself, facing the future can of course be demanding.

Fear is a historic theme.

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But in the place of fear, some tentative plans can be made.

I spent this morning chatting with Prof Olivier Piquet at NeuRA here in Sydney, Australia.

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Olivier happens to be known well to two colleagues of mine, Prof John Hodges and Prof Facundo Manes who wrote Forewords to my first book, “Living well with dementia”. Olivier explained to me a tranche of his research on the cognitive decisions involved in making plans for the future, whether or not demanding an assessment of risk.

I was familiar with this from another context: a failure to anticipate future outcomes from making dodgy decisions, which is what can happen following problems with the anterior part of the frontal lobe, at the very front of your brain. Of course, living life to the full involves some risk, whether or not you live with dementia.

I live in hope of certain changes to be made in world policy: that is a shift from ‘dementia friendly communities’ to ‘dementia inclusive communities’, for reasons I have recently described. The term ‘friendly’, with good intentions, oversteps the boundary concerning “otherness” for me.

But here Alzheimer Australia and the UK Alzheimer’s Society, for example, have made massive inroads I feel.

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I personally derive hope from the people around me. I have double vision and am physically disabled, and in recovery from alcoholism, but I do not see myself as a ‘sufferer’.

Alice is ‘Still Alice’, and Richard is ‘Still Richard’.

Richard Taylor: I’m Still Richard from Dementia Mentors on Vimeo.

I have just spent two weeks in the company of the most wonderful people I have ever met, in fact.

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Good luck to Julianne Moore for #Oscars2015

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Recently, I asked someone living with dementia whether he recommended I should watch “Still Alice”. He is yet to see the film.

He emphatically said, “yes”. In fact, he informed me that he would indeed buy the film if he thought it was any good.

“Still Alice” is a 2014 American drama film written and directed by Richard Glatzer and Wash Westmoreland and based on Lisa Genova’s 2007 bestselling novel of the same name. The film stars Julianne Moore in the role of Dr. Alice Howland, a Columbia linguistics professor diagnosed with early-onset Alzheimer’s disease.

Alec Baldwin plays her husband John, an ambitious medical researcher. Kristen Stewart, Kate Bosworth, and Hunter Parrish play her children Lydia, Anna, and Tom.

I was not looking forward to watching this film at all, despite its brilliant reviews. In a way, the film is in a ‘no win’ space of having not to over-glamourise dementia, and yet simultaneously not to depict it in overwhelmingly negative terms.

As someone who has been an academic and/or practitioner in this field since 1997, I really think the film is an excellent attempt at this very difficult topic.

No one person’s experience of dementia is the same as somebody else’s; and your perception of that person with dementia will depend on a huge number of factors, not least your own preconceptions and the coping strategies of the person living with dementia. The portrayal of Dr Alice Howland is completely believable though.

Dementia doesn’t just affect old people; although your risk of dementia increases as you become old.

The film is to be praised for emphatically demonstrating that the diagnosis of dementia affects friends and families, and not simply a person in isolation. Whilst the character Dr Alice Howland is initially told the possible diagnosis alone, it is clear that the whole family becomes involved.

There is a sense of the ‘prescribed disengagement’ which Kate Swaffer, living with dementia in Australia, has so graphically described. All too often the diagnosis of dementia is articulated as an ‘end’ rather than a beginning. I inevitably watched the film through the prism of how much it promoted the notion that it is possible to live better with dementia.

The effect on work in this particular story is interesting. I am mindful of other criticisms that portraying her as a linguistics professor is over-egging the topic somewhat, but reality can be larger than life. Prof John Hodges’ team in Australia, as is known publicly, was involved in charting the change in language profile of Iris Murdoch, renowned author and wife of Prof John Bayley who has recently sadly passed away.

In someone presenting with a clinical picture of early Alzheimer’s disease, with that particular distribution of abnormal amyloid protein in the brain (although we are not given precise details), as shown by PET neuroimaging, it might be entirely reasonable to seek out a genetic diagnosis such as a presenilin mutation. I realise that Dr Alice Howland is a fictional character, but the issue of how the issue of certain types of dementia might run in families is a very active one both in the US and here in the UK.

I quite liked the use of internet chat in the film. All around the world, there is interest in the intelligent use of technology to connecting unique individuals with dementia to others, and indeed to their past through the method of ‘life story’.

No film on this topic would be expected to be anywhere near perfect, and some of the issues will be raw for many, such as the choice of care homes and behaviour in them. However, I think that this film is as a good attempt as any to cover some hugely important issues.

I of course have reservations about aspects of the plot. Some people I know hated the film and the book. But I do wish Julianne Moore well, and I hope that she wins best Actress in the Oscars 2015 tonight/this morning.

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Norman McNamara is successfully turning the tide on dodgy cultural metaphors in dementia media

Tides are a popular cultural metaphor in dementia communications.

For example, it wasn’t that long ago that Alistair Burns, NHS England’s lead on dementia, was ‘turning the tide’ on numbers of people living with dementia.

Worldwide, this tide had been going in the opposite direction according to the Lancet.

Similarly, Canada was talking about the ‘rising tide’ of dementia.

Military constructions in unison with this tide are common too.

Kensington spoke of a ‘D day’ as well as ‘turning the tide’.

 

A further discussion here makes for interesting reading:

“[This] report runs with these metaphors much further, however, starting with the report title – Rising Tide: The Impact of Dementia on Canadian Society, the front cover, and continuing throughout.

The front cover illustrations, notably, are super-imposed with a blue transparency suggesting a metaphorical submersion in water. Three bar graphs, claiming to scientifically portray the numbers of people with dementia and the related “costs to Canadians for dementia care,” reach like waves over a pixelated map of Canada which in itself suggests a nation in danger of crumbling apart because of the supposed dementia burden (p. 1). Overall, between the title and the incorporation of flood-like graphics and apparently objective, scientific, and monetary facts, the front cover establishes the rising tide discourse that appears throughout the report implying that dementia is a concrete threat to an imagined Canadian population and the society, health system, and economy it cherishes.

Similarly, the four section cover pages throughout the document are superimposed with blue, and all the tables are titled and shaded in blue, as are the main titles within the text. Water, water everywhere. Additionally, the image of a rising tide is further constructed with words like surge and overwhelm: “The predicted surge in dementia cases will certainly overwhelm Canada’s health care system unless specific and targeted action is taken” (p.2 ). Even the repeated use of the words “impact” and “pressure” is evocative of a tsunami or rising tide crashing into the Canadian population, economy, and health care system (pp. 3, 5, 6, 8, 28, 31, 33).

Finally, the policy document is also inundated with huge, billion dollar amounts in both the text and the multiple tables which further works to present dementia as a threatening rising tide because of its predicted, catastrophic expense. To sum up, the IBCC report states: “At no other point in the history of Canada has there ever been such an urgent demographic imperative to step up to the challenge of improving acute care for older adults” (Donnelly et al., 2011, p. 84, emphasis added). ”

 

 

 

But anyway, here is Norman McNamara, living with lewy body dementia, talking about his tide.

 

The Tide of Life

Today was a glorious day in Torquay, and the sun was high in the sky, clear blue as long as the eye could see and the world was looking good. My darling wife and I sat on a bench overlooking the harbour and watched the world go by. Sometimes I look at her and I know she is thinking about our time together and how long days like this will last. Moving here was the best thing we ever did and no amount of persuasion or cash could ever tempt us back! This is our paradise, our dream come true and our home now, but, with the Dementia looming over us would it still be in a few years time?

As I watched the tide ebb and flow and the waves come in one after the other I suddenly thought that life was very similar to the waves, always there, always ongoing, and never-ending. I’m a great believer that no matter what happens in this world Life will always find a way… and that the human race will always survive. (Ever the optimist)

This set me thinking about my Dementia and I started to compare the Dementia to the waves. As I have good days and bad days I thought it’s just like the illness coming and going in waves, and when I have bad days it’s just the same as being stormy at sea. Someone once said “That time and tide wait for no one”How true this is about life itself?

Yes we can control some aspects in our life, and to a great degree we can influence what happens to us, but what we cannot control are the time and tides of life that keep coming no matter what.

At this point I turned and looked at the love of my life, her eyes still young and smile still as vibrant as the day we met…

“You were miles away then, where were you? She asks. “I was here darling”, I replied, and always will be. No matter what the future holds nothing will ever change, the fact that we chased our dream… caught it… and embraced it with vigour… And I wouldn’t want to be anywhere else or anywhere nicer than where we live now… They have predicted rain from Sunday onwards but do you know what? I don’t care; even the rain seems OK at the moment LOL…

Norrms xxxxxxxxxxxxxxxxxxxx

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