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Dementia care and support in a hypernormalised world, creating a virtual unreality

In March 2016, the Secretary of State for Health said, “A dementia diagnosis can bring fear and heartache, but I want Britain to be the best place in the world to live well with dementia”.

Of course, where fantasy begins and reality stops for Jeremy Hunt is a matter of conjecture, given the wilful blindness to the catastrophic A&E waiting times and delayed discharge performance.

On this theme,  “HyperNormalisation” by Adam Curtis has just been aired on the BBC iPlayer. It tells an epic narrative spanning 40 years, with an extraordinary cast of characters. They include the Assad dynasty, Donald Trump, Henry Kissinger, President Putin, intelligent machines, Japanese gangsters, suicide bombers and Colonel Gafaffi. All these stories are woven together to show how today’s fake and hollow world was created. Rather than face up to the real complexities of the world, Curtis articulates that they instead constructed a simpler version of the world in order to hang onto power.

Clinicians are very keen to label persons with dementia as ‘abnormal’ in terms of cognitive or behaviour, when often these decisions are perjorative and based on an arbitrary cut-off point of what is normal. With people with dementia being seen in hospitals described as ‘overstretched, underfunded and understaffed‘ by the Royal College of Physicians recently, with savage social care cuts as described clearly by the King’s Fund, it is hard to see where precisely the claim for ‘the best country to have dementia in’ can come from? Cited in the Hypernormalisation film is “Roadside Picnic” (Пикник на обочине) is a short science fiction novel written by Arkady and Boris Strugatsky in 1971. Roadside Picnic is a work of fiction featuring zones exhibit strange and dangerous phenomena not understood by humans, and contain artifacts with inexplicable, seemingly supernatural properties.

For clinically diagnosed persons with dementia, performance at some stage in cognitive domains, with supportive evidence say from neuroimaging, EEG, CSF or blood tests, the paradox exists for people with dementia having difficulty in ‘thinking faster’ are caught up in a hyper-fast hyper-connected world.  The Internet of things (“IoT”) is the trendy internetworking of physical devices, vehicles (also referred to as “connected devices” and “smart devices”), buildings and other items—embedded with electronics, software, sensors, actuators, and network connectivity that enable these objects to collect and exchange data. The IoT allows objects to be sensed and/or controlled remotely across existing network infrastructure, creating opportunities for more direct integration of the physical world into computer-based systems, and resulting in improved efficiency, accuracy and economic benefit. This can of course make the blurring between fantasy and reality even more difficult.

Care or nursing homes, hospitals or hospices, all seem to suffer a dire shortage of trained staff, and local problems might exacerbate this situation in future.  And the search is on for suitable companions, including a pet. But sometimes animals are often not allowed in nursing homes or day care centres, due to the risk of injury to patients, staff or visitors, the possibility of allergic reactions, and the potential nuisance of cleaning up after the animals.

Unsurprisingly, robots might be the next big thing in dementia care and support. The term ‘robot’ was first used in 1920 by the Czech playwright, Capek in a play entitled Rossum’s Universal Robots. Here robots turned against their human masters, a plot which may partially explain the tension between fascination and distrust of robots.

Change and even progress may be happening fast. In 2013, MIT engineering professor John Leonard told the MIT Technology Review that “robots simply replacing humans” would not happen in his lifetime. Today, Google’s autonomous cars have traveled more than 1m miles on public streets, and self-driving taxis seem all but inevitable. Domino’s Australia have even unveiled a pizza delivery robot in Brisbane, and Amazon are talking about making deliveries by drone.

In the last few years, many projects have addressed the use of robots for supporting elderly people aging in place, including people with dementia.  With the increasing incidence of dementia and the societal demand for cost reduction in care in general, a need grows for innovative care concepts to sustain and preferably improve the quality of care.

Socially Assistive Robots (SAR) are an emerging form of assistive technology encompassing all robotic systems capable of providing assistance to the user by means of social interaction.

SAR can deliver help at different levels:

(a) supporting user’s cognitive or functional abilities (e.g., task reminding and monitoring);

(b) offering the user opportunities to enhance social participation and psychological well-being (e.g., communication and social applications, companionship);

(c) providing remote and continuous monitoring of user’s health status (e.g., blood pressure or fall detection sensors); and

(d) coaching the user to facilitate the promotion of healthy behavior and achievement of health-related goals (e.g., improving nutrition. physical activity).

The therapeutic use of SAR in the context of dementia care has received increasing attention over the last decade as illustrated by a growing body of research). Most of these studies have focused on PARO, a therapeutic animal-like robot modeled on a baby harp seal, mainly employed to encourage social behaviour and/or alleviate stress among persons with dementia. It has five types of sensors: tactile, light, audio, temperature, and posture, with which it can perceive people and its environment. It can respond to stimuli, perceived by its sensors, by making noise, moving its eyes, head, and flippers.

Several intervention trials demonstrated promising effects of participating in PARO therapy in increasing motivation, improving mood, reducing stress, and increasing social communication in elderly people.

There’s also a need to consider the context of the usage of an assistive robot which takes into account the presence of other human beings. This may be much more challenging: functionalities of robots should be designed by taking into account various social contexts, which include, for example, the possibility of a robot to assist the caregiver and not directly the person with dementia?

Caring for the carers is a huge aim of person-centred dementia care worldwide. Results over many years have indicated that due to significantly higher levels of care provision in recent years, spouses experience differentially more depressive symptoms, physical and financial burden, and lower levels of psychological well-being.

There is also remarkably little research how the views of persons with cognitive impairment and caregivers converge or diverge regarding the acceptance of SAR. A more comprehensive approach should include both groups’ perspectives to better understand technology acceptance and usage intention of SAR in the general context of dementia care.

Part of the cognitive footprint of people with dementia can be marked attentional problems, for example manifest as impulsivity, disinhibition or distractability. The symptoms of people with behavioural variant of frontotemporal dementia (“bvFTD”) are most often a change in personality and behaviour. With the application of “virtual reality”, it might now be possible to elicit and examine the patient’s actual interpersonal behavior and responses to avatars while manipulating the social-emotional environment. The immersion of bvFTD patients in a virtual environment also allows the exploration of potential rehabilitation strategies for dealing with their social-emotional changes.

In a parallel universe, carers also might give themselves avatars and be involved in peer support groups known to be effectively reduce stress from caring for someone with dementia. While online groups have been shown to be helpful, submissions to a message board (vs. live conversation) can feel impersonal. Having avatars can have its advantages: it allows the carers to join the group even when they have a busy day, and may not have had a chance to put on their best T shirt in the way they would prefer for another video viewer.

A problem is, however, that in virtual  environments, we can be fooled into thinking that we are our avatars. People in virtual environments tend to behave in ways that are expected of their avatars. For example, if you embody a tall avatar, you’ll negotiate more aggressively than if you were given a shorter body.

As the world moves towards a future based on virtual reality, artificial intelligence, and machine learning, we have to think about where to draw lines to mark the distinction between reality and fantasy, what kinds of situations are problematic, and how to refashion the rules for a digital world. There are many legal and ethical issues involved.

The future is here?

Hyperconnectivity is the increasing digital interconnection of people – and things – anytime and anywhere. By 2020 there will be 50 billion networked devices. This level of connectivity will have profound social, political and economic consequences, and increasingly form part of our everyday lives, from the cars we drive to the medicines we take. All of our institutions will have to make increasingly thoughtful trade-offs between the value inherent in a hyperconnected world and the risk of operational disruption, intellectual property loss, public embarrassment, and fraud that cyberattacks create.

Concerns have been raised about a possible relationship between virtual reality and desensitisation. Desensitisation means that the person is no longer affected by extreme acts of behaviour such as violence and fails to show empathy or compassion as a result.

Another issue related to this is ‘cyber-addiction’. There are people who become addicted to virtual reality games and as a consequence, start to blur the boundary between real and virtual life.

But all of this might be Sir Lynton Crosby’s “dead cat strategy”, the man behind David Cameron’s ‘successful’ 2015 general election campaign.

Adam Bienkov describes the strategy thus:

“”Let us suppose you are losing an argument,” Boris Johnson wrote earlier this year.

“The facts are overwhelmingly against you, and the more people focus on the reality the worse it is for you and your case.

“Your best bet in these circumstances is to perform a manoeuvre that a great campaigner describes as ‘throwing a dead cat on the table, mate’.”

Going on to describe the manoeuvre he explains: “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.””

This new hyper normalised and hyper connected world may be the best thing to happen to person-centred integrated care in dementia ever.

Or it might be a dead cat simply presenting a virtual unreality.

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Kate Swaffer is clearly a world class ambassador for living beyond dementia

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Err… since this photo was taken in the Hotel Adina, opposite the conference centre hosting the Alzheimer’s Disease International (ADI) conference for 2014, I have lost a lot of weight (I wish.)

But actually literally seconds before this snap was taken, Kate had said ‘you goose!’ in utter surprise when I suggested to Kate she should turn her roaming charges off. We were, of course, both in Australia, and the country of habitual residence of Kate is also Australia.

I have many happy memories of that conference, though overall I tend to be antagonistic of conferences. Most of the plenary speakers tend to be overwhelmingly underwhelming.

There are of course some exceptional speakers. I always enjoy the updates on Prof Martin Prince on epidemiology of dementia, with a focus on low and middle income countries. I know this is a complicated area, as I am sure Prof Carol Brayne from my alma mater will demonstrate in Budapest for this year’s ADI conference.

Many of the pervasive issues internationally about living with dementia also relate very much to domestic jurisdictions: including research, drug therapies, timely diagnosis, care and support, enhancing health, and dying well.

Sometimes it can be all too easy to become an innocent pawn in massive corporate agendas, which sometimes tragically reveal themselves in slick ads from ‘big charity’, raising money, but pushing stigma of dementia to do so.

I first spoke with Kate over a rather greasy lamb moussaka. Beth was there. Beth and Kate took a mutual interest in what the restaurant had to offer.

I showed Kate the manuscript of my first book expecting her to be wholly uninterested in it: actually, the opposite was the case.

Kate’s background is not straightforward. A devoted mother and wife, haute cuisine chef (trained with the best people in this field), a distinction in dementia care from a world famous University, nurse specialist in operating theatres, volunteer in bereavement counselling, and, of course, keen international speaker on dementia.

I think Kate manages to update her blog every day, and has introduced an unique term called ‘living beyond dementia‘, which sums up a positive and flourishing approach – novel and original – setting aside the negative aspects of the impact of the medical profession in imparting a diagnosis.

Kate was the first person in the world to coin the term ‘prescribed disengagement‘ which was a huge impact in the field of dementia.

As Kate says, “This Prescribed Dis-engagement(TM) sets up a chain reaction of defeat and fear, which negatively impacts a person’s ability to be positive, resilient and proactive.”

“Dementia is the only disease or condition and the only terminal illness that I know of where patients are told to go home and give up their pre-diagnosis lives, rather than to ‘fight for their lives’.”

It is all too easy to become ageist about dementia, but it is the case that dementia encompasses conditions of the age which can affect people below the age of 65. Particular considerations for the so-called ‘young onset dementia’ might include how the diagnosis is arrived at, as well as subsequent impact on real lives such as family or employment.

I personally don’t think that academics can have the moral integrity to present the full picture, when what is truly valuable and a scarce commodity is the expertise and lived experience of people living with dementia.

I think it goes further than ‘working with not for’ in fact: it is more of a question of ‘who’s in the room’ at all. I think of the co-production imperative as ensuring there are ‘no more throw away people’ as per Prof Edgar Cahn. This, as Prof Peter Mittler reminded me recently, has a parallel in the inclusivity literature as ‘No one left behind’.

And above all – it is clear people having had a diagnosis of dementia feel great comfort from the experiences of other people in similar circumstances who have reconfigured their lives accordingly. Indeed this should be the analogous to how people with physical disability are given ‘reasonable adjustments’. Whilst reasonable adjustments is a rather legalistic clunky term, it is an aspect which has been seriously lacking in the drug-focused medical model of dementia.

Kate Swaffer, not just living with a dementia, has an important narrative to tell, which is continually evolving. It is totally unsurprising that her being Chair of Dementia Alliance International (DAI), an international stakeholder group for people with dementia, has been welcomed as a huge success by Alzheimer’s Disease International.

It always seems like a marathon not a sprint, and a long one at that. I thought it was unbelievably clumsy that the World Dementia Council, a steering group on world dementia work, did not have a single representative living with dementia currently.

I indeed wrote an open letter on October 13 2014, which is on the DAI website here. I was of course ecstatic when Hilary Doxford, a mutual friend and colleague, was appointed onto the WDC, as documented here.

Kate is a world-class advocate for people with dementia, and, take it from me, a force to be reckoned with.

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