Dementia Care and Support in a Hypernormalised World, Creating a Virtual Unreality – by Shibley Rahman

Dementia Care and Support in a Hypernormalised World, Creating a Virtual Unreality

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 Gaddafi. 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 pejorative 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), 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 artefacts 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 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 travelled 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 modelled 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 distractibility. 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 behaviour 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 cyber attacks 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.

Follow Shibley Rahman on Twitter and find out more about his books here.

A Q&A with Gary Mitchell, author of Doll Therapy in Dementia Care

Mitchell_Doll-Therapy-in_978-1-84905-570-3_colourjpg-print

We caught up with Gary Mitchell on the publication of his important new resource for dementia care professionals – Doll Therapy in Dementia Care.

What motivated you to write the book – Doll Therapy in Dementia Care?

I qualified as a nurse in 2010 and my first post was in a dementia care unit in Northern Ireland.  When I began working on the unit I quickly saw the benefits of person-centred care and non-pharmacological interventions.  One particular intervention that was regularly taking place on the unit was ‘doll therapy’.  Initially it was an intervention that I wholeheartedly rejected because I felt it perpetuated stigma that can be associated with dementia.  I felt like playing with dolls would undermine the person-hood of the individuals living with dementia I was nursing.  After some time I began to see some very positive outcomes in some of our residents’ quality of life who engaged with doll therapy.  On reviewing the evidence in 2010, I found that there wasn’t really that much out there.  Over the past number of years I have closely studied doll therapy in dementia care through my practice and academia.  My opinions on doll therapy, informed by evidence and practice, are starkly different.  In short, doll therapy can enhance the quality of life for some people who live with dementia.  This was the sole reason for writing this book – to share the evidence and practice about doll therapy so as people living with dementia who will benefit from it can be enabled to do so. Continue reading

2016 Dementia Catalogue – New & Bestselling Titles

Take a look at our latest Dementia Catalogue. For more information on any of the titles, or to purchase a book, go to www.jkp.com.

Sign up here to receive a free copy of the catalogue in the post or via email.

Shibley Rahman talks about his book, Living Better with Dementia

shibley

Identifying current global policy challenges for living well with dementia, this book tackles controversial topics at the forefront of public and political debate, and highlights pockets of innovation and good practice from around the world to inform practical solutions for living well with dementia in the future. We talked to Dr Rahman about the book and his thoughts on the current process of dementia diagnosis. 

What motivated you to write Living Better with Dementia?

The name of the only national dementia strategy for England so far was ‘Living well with dementia’. This name is problematic, as it potentially sets people up to fail. What if a person has a bad day? We’re all entitled to have a bad day.

The actual strategy expired in 2014, exactly five years after it was launched by a previous government in 2009. I wanted to keep with the ethos that it is possible to aspire to live as well as possible with dementia. The prism of long term conditions suits people with dementia much better than the approach which relies solely on drug treatments.

The title of the book, Living Better with Dementia, is in fact from Chris Roberts, living with mixed dementia of the Alzheimer type and vascular type. I am honoured that Chris wrote one of the forewords. Kate Swaffer, Chair of Dementia Alliance International, wrote the main foreword.

There has to be an alignment of rhetoric and reality. That’s why I respect the work of Beth Britton who wrote the final foreword. Beth has an intimate lived experience of dementia from family, and professional experience in how this impacts on actual care. The topics of my book give a realistic state-of-the-art exploration of key themes in wellbeing in dementia, not entrenched in dogma, but which promote awareness and education. Continue reading

Living Beyond Dementia – an interview with Kate Swaffer

brain

 

Kate Swaffer was just 49 years old when she was diagnosed with a form of younger onset dementia. In her book, she offers an all-too-rare first-hand insight into that experience, sounding a clarion call for change in how we ensure a better quality of life for people with dementia. We caught up with her to find out a bit more about the book and the experiences that motivated her to write it. 

What made you want to write ‘What the Hell Happened to my Brain?

Following the diagnosis of dementia, for the first few years whenever I attended something to learn more about dementia, it was always people without dementia telling me how and what I was feeling, what was happening to me, and also what was best for me. At no time, did anyone bother to ask me. I suppose, that is really what started me writing about living with dementia as I was sick of it, and could not believe (still cannot) people without dementia felt they could truly believe what it is like being diagnosed and living with dementia. On top of that, the public narrative and discourse is still almost always about suffering, and although I do suffer some of the time (from dementia and other ailments), it is not the sum total of my experience, so I wanted to share that it is possible to “Live Beyond Dementia.”

My blogging was also a way of cataloguing my daily experiences and thoughts, and very quickly became a communication tool between family and close friends, and then the wider dementia community, as well as a memory bank for me to go back to. So the habit of writing now, almost daily, for more than four and a half years, also gave me the discipline and practice to write a book. Continue reading

Sign Up for the 2016 Dementia Catalogue

Dementia Catalogue – New & Bestselling Titles 2016 

Please fill in your details below to receive our new Dementia Catalogue. Remember to specify if you’d like to receive the catalogue by post or email – just choose ‘yes’ in the drop down box for either option.

By completing the form below you are signing up to our mailing list, but you may unsubcribe at any time.











 

The Making of ‘Dad’s Not All There Any More – A comic about dementia’.

Alex Demetris is an illustrator, cartoonist and maker of comics. He completed an MA in Illustration in 2012, which resulted in a comic based on his family’s experience of coping with his father’s dementia: Dad’s Not All There Any More – A comic about dementia. Here he shares a little about the process of creating the comic and some of his pre-publication sketches (click to enlarge the images).
Alex also co-authored Grandma’s Box of Memories: Helping Grandma to Remember.

The idea for Dad’s Not All There Any More came to me whilst I was studying for an MA in illustration at Camberwell College of Art.  I had been making comics and drawing cartoons as a hobby for a number of years, and decided to enrol on the MA to see how good I could get by focusing on my hobby full time. Continue reading

International Day of Persons with Disabilities – rights-based approaches to living better with dementia

As today is the UN’s International Day of Persons with Disabilities, and in support of Alzheimer’s Disease International (ADI) and Dementia Alliance International (DAI)’s  call for global Gordon-Swaffer-_Living-Better-w_978-1-84905-600-7_colourjpg-printrecognition of dementia as a disability, we wanted to share this short extract on rights-based approaches from Shibley Rahman’s recently published book, Living Better with Dementia: Good Practice and Innovation for the Future.
Read the full extract, which includes Kate Swaffer’s prescribed disengagementTM  model, here.

You can also read Shibley’s blog post on this topic; “Dementia as a disability needs to encourage sustainable achievable goals”, here.

To find out more about Living Better with Dementia, read reviews or order your copy, visit the book page here.

Join our mailing list to receive your free copy of our latest dementia books brochure.

Sign up to our mailing list to receive a free copy of our latest brochure of new and bestselling dementia titles.

Catalogue Promo-NF

Featuring: The Books on Prescription for Dementia scheme; exclusive new titles from Christine Bryden, Lucy Whitman, Shibley Rahman, and many more.

 

To request a free print copy of the JKP complete catalogue of books on dementia, sign up to our mailing list below. You can also sign up to receive emails by choosing ‘yes’ in the ‘receive emails’ box. Be sure to click any additional areas of interest so we can notify you about exciting new titles you might like. You should receive a copy of the catalogue within three weeks. You can opt out of our mailings at any time.

You can also browse the online version of the brochure here



























Music therapy and dementia care – it’s now time to win friends and influence people

Shibley Rahman completed his PhD in frontotemporal dementia at Cambridge University, commencing a lifelong interest in the timely diagnosis of dementia. In this article he argues for more high quality research into the possible benefits of music therapy for people living with dementia; as well as making the case for the development of dementia care strategies which include the vital insight of people trying to live well with dementia today, so we can improve the experience of care for the many people in future who will receive a diagnosis of dementia.
You can learn about Shibley’s book,
Living Better with Dementia, here

It won’t have escaped you, hopefully, that the five-year English dementia strategy is up for renewal at any time now. The last one ran from 2009 to 2014.

Probably the usual suspects will get to command the composition of the new one. “Dementia Friends” has been a great initiative which has taught at least a million people so far about some of the ‘basics’ about dementia, but this ‘raising awareness’ is only part of a very big story.

In my book Living Better with Dementia: Good Practice and Innovation for the Future, about to be published by Jessica Kingsley Publishers, I argue that it is the people currently trying to live better with dementia who should be the ‘champions’ for the future. I believe strongly they should drive policy, not ‘leading Doctors’ or senior members of big charities.

My reasoning is as follows.

The population at large can be thought of as consisting of many people, represented below as dots. Networks

In a ‘cohesive’ (close) network such as A, members in the network are connected in close proximity. This builds trust and mutual support, discourages opportunistic flow of information, facilitating communication but minimising interpersonal conflicts. A cohesive network might be the hierarchical network of medical professionals.

A ‘sparse’ network (C) is effectively opposite to cohesive networks; but let’s say for the purposes of my example C consists of people with an interest in non-pharmacological interventions in dementia, including unpaid family carers.

In bridging networks, the ‘bridge’ (B) acts between disparate individuals and groups, giving control over the quality and volume of information exchange. I think of politicians such as Debbie Abrahams MP and Tracey Crouch MP, and the All Party Parliamentary Group on dementia at large, as people who can act as the bridges. These people are pivotal for policy formation.

I devoted a whole chapter of my new book to promoting leadership by people aspiring to live better with dementia.

Having all these people involved will improve the thought diversity and relevance of the new strategy for people actually living with dementia

We are currently in the middle Music Therapy Week 2015, dedicated to raising awareness about how music therapy can improve the lives of people with more progressed dementia. It’s no accident I’ve devoted the bulk of one chapter in my book to explain the brain mechanisms behind why music has such a profound effect on people living with dementia.

We, as human beings, all react uniquely to different music – there’s every reason to believe that certain people living with dementia, whether in the community, at home, in residential home, or a hospice, in other words wherever in the “dementia friendly community”, can hugely benefit from the power of music.

According to NHS England;

“Over the next five years and beyond the NHS will increasingly need to dissolve these traditional boundaries. Long term conditions are now a central task of the NHS; caring for these needs requires a partnership with patients over the long term rather than providing single, unconnected ‘episodes’ of care.”

In Rotherham, GPs and community matrons work with advisors who know what voluntary services are available for patients with long term conditions. Apparently, this “social prescribing service” has cut the need for visits to accident and emergency, out-patient appointments and hospital admissions.

Today sees a wide-ranging, open discussion of music therapy and dementia in Portcullis House, in Westminster. Prof Helen Odell-Miller, Professor of Music Therapy, Director of The Music Therapy Research Centre and Head of Therapies at Anglia Ruskin University, presented significant research findings at the meeting.

I feel music is not being given a fair ‘crack of the whip’ in the current policy. The first English strategy,  “Living well with dementia: a national dementia strategy” , was initially launched by the Department of Health, UK in order to improve ‘the quality of services provided to people with dementia . . . [and to] promote a greater understanding of the causes and consequences of dementia’ (Department of Health, 2009, p. 9).

We could have done, I feel, so much more on research into music by now. We could have done much more to increase the number of music therapists in England by now. Maybe some of this is due to ‘parity of esteem’, which has seen mental health play ‘second fiddle’ to physical health.

There are, however, glimmers of hope though, I feel. For example, it was last year reported in the Guardian:

“Overseen by Manchester University, it is part of a 10-week pilot project called Music in Mind, funded by Care UK, which runs 123 residential homes for elderly people. The aim is to find out if classical music can improve communication and interaction and reduce agitation for people in the UK living with dementia – estimated to number just over 800,000 and set to rise rapidly as the population ages.”

Accumulating evidence shows that persons with dementia enjoy music, and their ability to respond to music is potentially preserved even in the late or severe stages of dementia when verbal communication may have ceased.  Musical memory is considered to be partly independent from other memory systems. In Alzheimer’s disease and different types of dementia, musical memory is surprisingly robust, and likewise for brain lesions affecting other kinds of memory.

Given the observed overlap of musical memory regions with areas that are relatively spared in Alzheimer’s disease, recent findings may, actually, explain the surprising preservation of musical memory in this neurodegenerative disease. Jacobsen and colleagues (2015) found a crucial role for the caudal anterior cingulate and the ventral pre-supplementary motor area in the neural encoding of long-known as compared with recently known and unknown.

That’s why I believe we should support the British Association for Music Therapy (BAMT), the professional body for music therapists and a source of information, support and involvement for the general public.  The title music therapist can only be used by those registered with the Health and Care Professions Council. So there is regulatory capture, if not corporate capture.

This year’s campaign by the BAMT focuses on the instrumental role music therapy has to play in supporting people with dementia and those who care for them. Indeed, the current Dementia Strategy acknowledges that music therapy, as well as other arts therapies, ‘may have a useful role in enabling a good-quality social environment and the possibility for self- expression where the individuality of the residents is respected’ (Department of Health, 2009, p. 58).

Leading research has suggested that music therapy can significantly improve and support the mood, alertness and engagement of people with dementia, can reduce the use of medication, as well as helping to manage and reduce agitation, isolation, depression and anxiety, overall supporting a better quality of life. But very recently Petrovsky, Cacchione and George (2015) have found that there is “inconclusive evidence as to whether music interventions are effective in alleviating symptoms of anxiety and depression in older adults with mild dementia due to the poor methodological rigor”. This reinforces my view that service provision will only be markedly improved if we invest in high quality research, as well as the allied health professionals who can offer high quality (and regulated) music therapy as clinical service.

Living Better with DementiaAs I argue in my new book, “Dementia Friends” is great – but we’ve gone way beyond that now. The “Prime Minister Dementia Challenge“, I feel, showed great leadership in prioritising dementia as a social challenge, and the “Prime Minister Challenge on Dementia 2020” follows suit.

Being honest, we haven’t got a good description of what ‘post diagnostic support’ means, and therefore what it precisely looks like, for dementia. But one thing that is very clear to me that we need to invest in the infrastructure, including research and service provision, to implement living better with dementia as a reality in England. But I remain hopeful that my colleagues in the music therapy world will be able to win friends and influence the right people.

Find out more about Shibley’s book, Living Better with Dementia, read reviews or order your copy here.