How has the field of dementia care changed in the past 30 years?

changes in dementia careTo mark JKP’s 30th anniversary year, Professor Dawn Brooker writes for us on the challenges and achievements of 30 years of dementia care. What has changed and what still remains to be done?

Dementia; Reflections 1987-2017
by Professor Dawn Brooker

The field of dementia care has changed beyond recognition in the last 30 years. In part this has been driven by the sheer numbers of people whose lives are now affected by dementia. In 1987 dementia was a rare condition. It was barely spoken about in its own right but rather was seen as an insignificant part of older people’s psychiatric care. There had been a report published by the Health Advisory Service called “The Rising Tide” in 1982 which highlighted the rising numbers of people we should expect and called for “joint planning and provision of comprehensive services for the elderly mentally ill”. The predictions they made about numbers came true. The number of people with dementia in the UK is forecast to increase to over 1 million by 2025 and over 2 million by 2051. There are over 40,000 people with early-onset dementia (under 65) in the UK. Dementia impacts the whole family and society. A recent survey by Alzheimer’s Research UK showed that a 24.6 million people had a close family member or friend living with dementia. 1 in 3 babies born this year will develop dementia in their lifetime. Unfortunately, the strenuous suggestions the Health Advisory Service made about joined up comprehensive services to meet these growing needs have not yet materialised.

In 1987 I was working as the lead clinical psychologist in the NHS services for older people in Birmingham. Even the language then was radically different. My job title was the EMI (Elderly Mentally Infirm) Clinical Psychologist. My office was in a psychiatric hospital (the asylum) covering many long-stay wards which were mainly populated by elderly people. Some had lived all their lives in hospital having been admitted for being pregnant out of wedlock or for some other “misdemeanour”. Many patients that I saw in those early days had undergone hundreds of electric convulsive therapy treatments, brain surgery and prescribed mind-bending drugs.  There was little formal diagnosis of dementia. People were generally classified as senile. The ward that catered for people with advanced dementia and physical health problems was known as the “babies ward” by the nursing staff and known as “the non-ambulant dements ward” in official documents. This was 1987, not Victorian England. Continue reading

6 Top tips on how to facilitate good interaction with older adults

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Robin Dynes, author of ‘Positive Communication: Activities to reduce isolation and improve the wellbeing of older adults’ provides some tips you can use to help facilitate good interaction with older adults and create a friendly environment

 

  1. Take any health and cultural issues into account

Age related health problems such as the onset of dementia, hearing loss, speech problems and the effects of medications can complicate understanding and the ability to communicate. Be aware of any difficulties individuals may have and take these into account. Make adjustments to any activities to allow for different mental and physical abilities. Even in today’s enlightened age many older adults, and, indeed, young people, have difficulty reading and writing. Find out all you can about the person you are supporting and adjust your communication methods to suit. This includes learning about their cultural background and what is or is not acceptable to them when communicating. For example, in some cultures it is disrespectful for younger people to make direct eye contact with an older person. In this instance it may be prudent to sit slightly to one side, keeping your eyes lowered but so the person can see your expressions, rather than facing the older person when talking.

Continue reading

How to build confident and compassionate dementia care teams

confident-compassionate-dementia-care-teamsLuke Tanner, author of Embracing Touch in Dementia Care, writes here about the importance of touch and physical contact when caring for someone living with dementia.
What happens when we deprive this type of comfort from those in need of it? How do we build confident and compassionate teams of carers? 

Whilst researching my book on touch in dementia care, I observed professional carer’s with exceptional skills in their use of touch. These carers were not trained in any fancy massage techniques or procedures. They were merely doing what came naturally to them. It was as natural as seeing a father cuddling up on the couch with his child, children playing together, partners consoling each other, a mother soothing her baby, or friends congratulating each other. Upon discussing their use of touch I discovered that they had learnt these skills simply through living their life. Their ability to offer tender loving care grew from the tenderness, love and care they had received themselves. This loving and comforting touch is universal, which means it is shared by all humanity.

Closeness speaks volumes in every culture. We tend to try and keep the people we love and care for close, remain distant from the people we care little about and push the people we dislike further away! You don’t have to be very clever or have all your cognitive faculties intact to understand this language. It is a primitive language that all mammals share: a language that relies upon the faculty of empathy; an ability to identify with and respond appropriately to the feelings and needs of others. This faculty is absolutely crucial to care-giving as well as human kind. Without it we would be lost and alone. Mammals are social animals because they are born with this seed of empathy. Loving and affectionate touch is the water that helps this seed grow strong. Touch and empathy are so closely bound that many forms of touch are actually experienced as empathy. This is because we first came to know empathy through touch, in the very first days or even moments of our life. Lessons in empathic touch start early, before words begin.

Given that touch is such a natural and effective way of caring, you would think that professional care providers would cherish this exceptionally powerful caregiving tool. Sadly this is not the case in many care settings. Many of the forms of comforting touch described above are often viewed upon with suspicion, doubt and mistrust. Discussions with professional carers about their attitude towards touch often reveal a great deal of uncertainty about what kinds of touch are acceptable in care settings and a lot of concern about how other people (peers, family members, visiting professionals, local authorities etc.) might perceive their touch. In short there is a lot of fear about “getting too close” and a great deal of uncertainty about how close “too close” is. A professional carers use of touch is further affected by lots of other issues ranging from beliefs about “the elderly” and people with dementia, staff uniforms, the furniture and layout of a care home lounge, concerns about infection control, to task orientation and routine bound systems of care. Unless directly addressed, these issues often add up to an extremely confused or touch-averse culture of care. Confident and compassionate care teams cannot exist in these cultures of care because such conditions actually function to suppress empathy. Care without empathy is not only meaningless but inhumane; it is the kind of care that one might accept from a machine but despair over when it is from a person.

Whilst human contact can also be intrusive, abusive and exploitative and people with dementia can be more vulnerable to this kind of treatment, there is another greater and far more prevalent risk, and that is the risk of no contact at all. In protecting people with dementia from invasive or hostile physical contact, care providers can end up depriving them of any meaningful contact at all. This kind of deprivation is just as harmful as any other form of abuse. When we become overly fearful about carers getting ‘too close’, people with dementia can end up being kept so far away from other people that there is no longer anyone close enough to share their lives with. This is a desperate situation particularly during times of loss, uncertainty and pain.

Over the course of researching this book I have worked with care teams that effortlessly offer tender loving care as well as disempowered care teams, demoralised from years of having to suppress their own empathy and deprived of their own humanity. The result of this research is a book that will help care providers restore trust in touch and identify and remove the obstacles that stop human beings from being human to one another. I urge care providers to use this book to build confident and compassionate care teams that can communicate naturally and effectively in a language that people with dementia will always understand.

Luke Tanner is a massage therapist, body psychotherapist and dementia care trainer. He specialises in the use of touch and non-verbal communication to support the wellbeing of people with a dementia living in residential care settings. His book Embracing Touch In Dementia care was published by Jessica Kingsley Publishers in May 2017.
For more information about Luke’s work please visit www.touchincare.com
To register your interest in Luke’s next workshop for Dementia Carers on 13th September 2017 visit 
www.luketanner.co.uk/staff-training

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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

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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

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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

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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

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.

There is an alternative if you want people to live better with dementia

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 explores some of the work being done to reduce reliance on medication and increase our understanding and use of non-pharmacological interventions; looking to the future of dementia care.
You can learn about Shibley’s book,
Living Better with Dementia, here

Currently, Alzheimer’s Disease International estimate that there are 47 million people around the world living with dementia. Whilst the policy planks of ‘prevention’ and ‘cure’ continue to attract attention, there is concern amongst many that the people trying to live better with dementia don’t get caught behind.

Gordon-Swaffer-_Living-Better-w_978-1-84905-600-7_colourjpg-printThere’s been a concerted effort to look at the cost of drugs in the NHS in recent times. ‘Innovative drugs’ have been a big deal in the service, and it is reported that new innovative drugs approved by NICE between 1999 and 2004 added £800m a year to the UK drugs bill.

Irrespective of the cost of the drugs budget in England, one is right to query whether patients are being given the appropriate treatment based on the current best practice. A temptation of a medical doctor to prescribe a ‘magic bullet’ can easily explain away the ‘over-medicalisation of illness’, leading the Academy of Royal Colleges justifiably to take action earlier this year.

There are probably over 400,000 older people living in care homes, and possibly dementia ‘affects 80% of care home residents‘. With the scale of statistics, one is bound to be concerned at the potential volume of inappropriate antipsychotics scripts for people living with dementia. Prof Sube Banerjee helpfully reported on this issue in 2009 for the Minister of Care Services at the time.

Every chemical medication has its side effects. I am always impressed with the ease at which the pharmaceutical industry is able to market their drugs, given that there are 1000 billion nerve cells in the human brain all connected with one another directly or indirectly in various ways.

With so many different functions of the human brain, such as memory, attention, perception, language or planning, to name but a few, it has been a difficult task to work out which particular ‘hubs’ involving parts of the brain are particularly involved in certain functions.

The exact characterisation of wellbeing in dementia remains an active area of discussion. For example, five psychological needs had been described by Tom Kitwood – comfort, attachment, inclusion, occupation and identity. Identity itself has been subject to volumes of work, some empirical, but apparently the need for identity ‘involves maintaining a sense of continuity with the past, and some kind of consistency in the present life’ (Kitwood, 1997, p. 20).

In my book Living Better with Dementia: Good Practice and Innovation for the Future, identity is a really big deal. I suggest a possible way in which the human brain might be able to reactivate “sporting memories” from his or her own past. I also describe the powerful effect that music can have on the wellbeing of a person living with dementia.

Also, pervasive to my entire argument is that dementia should be recognised as a disability under the Equality Act (2010) and the United Nations Convention on Rights of People with Disabilities. This takes the argument one towards ‘rights based approaches’, imbuing potentially a ‘rights consciousness’ of what all people are entitled to. When you consider that people receiving a diagnosis of dementia can find the whole experience totally disempowering, as described clearly by Kate Swaffer in her groundbreaking work, the idea that some form of reablement or rehabilitation is incredibly powerful.

The human brain is uniquely baffling. According to Professor Nancy C. Andreasan, “When the psychologist Kay Redfield Jamison looked at 47 famous writers and artists in Great Britain, she found that more than 38 percent had been treated for a mood disorder.”

Some people when they develop a dementia acquire novel artistic talents. How this happens is still a mystery, but it gives a whole new dimension to the term ‘living better with dementia’.

Also, a few months ago, I was asked to introduce by Lucy Frost, a specialist nurse in dementia, a film in a small church in Brighton, England. This film called Alive Inside was a brilliant demonstration of how people living in residential homes would get ‘switched on’ by listening to music from a portable mp3 player, enhancing individual and collective wellbeing. In contrast to medications, a portable mp3 player has remarkably very few side effects, and is relatively inexpensive.

It is claimed that, in Antiquity, Canus, a Rhodian fiddler, used music to “make a melancholy man merry, …a lover more enamoured, a religious man more devout.” One of Alan Partridge’s favourite quips was, “If music be the food of love, then play on.”

Music is a unique phenomenon in being at the interface between emotions, memory and perception in the brain. Cognitive neuroscientists have long recognised that music presents a special conundrum. Only last week, a paper in the prestigious journal Brain was published which sheds light on why music has this unique power even in advanced Alzheimer’s disease. The authors of that particular study hypothesised that parts of the brain, which were relatively unaffected in advanced Alzheimer’s disease, had a special rôle in the appreciation of music (parts of the brain including, perhaps, the anterior cingulate and pre-supplementary motor area).

The relevance of music to residents who live with dementia is all to see in the current series of #Dementiaville, now showing on Channel 4. But in this age of ‘doing things differently’, which is often sadly used as code for cutbacks, there has been a conspicuous reluctance to give non-pharmacological approaches for dementia serious consideration. As England, and other jurisdictions, teeter at glacier pace towards integrated care (and perhaps even whole person care), it is possible a volte face will some day come with the adoption of social prescribing and its offerings.

I feel the way for this alternative view of dementia policy to get momentum is not to have tokenistic involvement of people living better with dementia on a select few number of panels. They must be given prominence in leadership rôles so that they are listened to properly in service design, provision and research. The mantra of ‘there is no alternative’ has had its day.

Reference

Kitwood, T. (1997). The experience of dementia. Aging & Mental Health, 1, 13–22.

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