In this blog post, author Dr Shibley Rahman addresses the urge to recognise the needs of the workforce in dementia education and training by asking a simple, yet poignant, question: what real progress has been made in this direction over the past few years?
The current Prime Minister’s Dementia Challenge 2020 has successfully improved the awareness of dementia (and quality in other areas), but it also did produce a lot of other industrious contributions, such as courses and conferences, not always with a primary aim of educating the workforce.
A lot has been made of the finding that people living with dementia are “core users” of the NHS and social care. And it has been said “dementia is everybody’s business”. But these tropes are too easy to trot out. Rather, the needs of people with dementia and their care partners often go unaddressed, despite much effort being publicly pumped into ‘dementia awareness’.
Just before Christmas last year, as a full time carer of a family relative with dementia, I had reason to experience at close quarters an English hospital admission. Although I am loath to extrapolate from what was essentially an anecdotal experience, I found the mismatch between reality and political rhetoric quite revealing. Continue reading
With a key theme for every week of the year, this resource contains extended multi-sensory reminiscence group session plans for older adults.
Written by experienced occupational therapists, it provides detailed session plans for running successful and therapeutically-valuable activities within group sessions, from remembering school days to celebrating the natural wonders of the British Isles. Each plan has been developed to be suitable for people with a variety of abilities, including for those with dementia, and help to support memory, sensory function, confidence, communication, connection, as well as overall physical and emotional wellbeing.
These group session plans are taken from Sophie Jopling and Sarah Mousley’s new resource, The Multi-Sensory Reminiscence Activity Book: 52 Weekly Group Session Plans for Working with Older Adults.
Sophie Jopling and Sarah Mousley are State Registered Occupational Therapists and together they run their own independent OT business, Kent Occupational Therapy.
To 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
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
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.
Luke 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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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.
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
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