What can teachers and parents do to help children experiencing loneliness?

child lonelinessChild loneliness and its effect upon emotional wellbeing is becoming an increasingly explored topic, as shown by recent NSPCC and Child Line campaigns. But what can teachers and parents do to support children who are feeling lonely? And how can we help children to understand the difference between healthy solitude and loneliness?

In this extract from Julian Stern’s Can I tell you about Loneliness?, we met Jan, aged 11. Jan tells us about some of the things that can cause him to feel lonely. He explains what it means to feel lonely, and discusses therapeutic ways of alleviating this difficult emotion.

Read the extract

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Creative coping strategies to help young people manage stress, anxiety and other big feelings

Age range:

Ages 8 – 14

Description:

A colouring book and journal filled with uplifting quotes and poems that encourages children experiencing stress, anxiety and other big feelings to manage their emotions. With a range of activities that introduce mindfulness and encourage relaxation, the workbook is designed to prepare young people for future difficult situations.

Click here to download the resource

This extract is taken from Pooky Knightsmith’s The Health Coping Colouring Book and Journal, which is designed to help young people manage difficult thoughts, feelings and emotions such as anger and anxiety.

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.

Mental health support made simple

Following the second edition release of Introducing Mental Health, authors Connor and Caroline Kinsella provide insight into taking a more global and simplified approach to mental health support in the fully revised and updated second edition.

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We wrote the original Introducing Mental Health: A Practical Guide to make the very complicated seem a little bit simpler and to help front-line workers do what often seems like the impossible. It’s not an easy role at the best of times, but much has happened in the nine years between editions to make the job of mental health care even more difficult than it was in 2006.

As thoroughly well behaved and professional writers (ahem) we chose not to fill the book with a long list of all that is wrong with UK mental health services. After all, most of our British readers need no reminders of the savage cuts, dwindling resources and disappearing in-patient beds that are now a feature of UK mental health.

But while it’s all very well to moan incessantly about our own back yard, we looked to the developing world for inspiration to update the simple, straightforward approach to mental health care embodied in the first edition. We’re lucky enough to have as a close friend one Vikram Patel, the Foreword writer of both editions, who is also the director of the Centre for Global Mental health, London. Vikram has spearheaded the global mental health movement which has helped make mental health a priority issue in those parts of the planet where malnutrition, malaria and HIV have traditionally demanded resources that truly put our own budget cuts and resource slashing into perspective. He is now on Time Magazine’s ‘World’s 100 Most Influential People’ list and we met up with him just as he had been interviewed for BBC Radio Four’s excellent The Life Scientific series.

It was a little strange sitting in a London pub with an old friend who is now the psychiatric equivalent of Kim Kardashian, albeit with a rather more worthwhile contribution to the world. While western psychiatry remains bound by an ever increasing list of obscure diagnoses, pharmacological treatments and reliance on highly trained professionals, the global mental health approach is a means of delivering care and support to communities without the need for complex resources, vast infrastructures or highly qualified personnel. Under this guise, mental health support is largely delivered by local people who, to put it quite simply, work with people not symptoms. In a word, it’s a very, very simple model of mental health care. And it works.

Psychiatry is, after all, a relatively straightforward science. It doesn’t take a master’s degree to recognise  when someone is severely depressed or saying bizarre things or taking an hour to leave their house because all the windows and doors need checking several dozen times. But supporting people through mental ill health can be anything but straightforward, and with qualified professionals and NHS facilities becoming ever more scarce, we now rely on police and prison officers, accident and emergency staff, housing support workers and (increasingly) friends and relatives to deal with our most needy and distressed people.

And while the poorest parts of the world begin to develop simple low-tech support systems that make optimal use of professional expertise combined with common-sense and the local knowledge of communities, the global mental health approach starts to look a lot like the sort of system that in many ways we in the UK are adopting by default.

We’ve written Introducing Mental Health twice, in both editions reflecting the many different scenarios and types of worker with whom we have worked in both clinical practice and training. We haven’t ignored the huge advances in the science of genetic and biological origins of mental illness, and have tried to make the science accessible to all. After all, there aren’t many people who would guess how much their Chinese takeaway has in common with the latest explanation of psychotic illness*. But above all we’ve strived to learn from Professor Patel and global mental health how this is above all a social issue, and how all of us have a part to play in helping our community’s most distressed and vulnerable people. It’s really surprisingly simple.

* Sorry. You’ll have to read the book to find the answer.

 

Caroline Kinsella has been a registered nurse since 1980 and has specialised in working with offenders and individuals with severe mental health problems. She has a Master’s degree in Forensic Mental Health from St Georges Hospital Medical School and is currently working with the Dorset Inreach Team as a mental health nurse assessing and care co-ordinating the needs of offenders in several Dorset prisons. Both Connor and Caroline live in Dorset, UK.
Connor Kinsella trained as a mental health nurse and has considerable experience of working with mentally ill people in both in-patient and community environments. Since 1998 he has designed and facilitated training for a wide range of services in health and social care. He writes a well-regarded blog called The Stuff of Social Care and has contributed to The Guardian’s Social Care Network.

To learn more about Introducing Mental Health click here.

 

Who takes care of the caregiver?

Shake up your view of your demanding and relentless work so that you can start to put yourself at the centre of your caregiving work. Cheryl Rezek, author of Mindfulness for Carers, has written an incredibly honest blog on why it’s important to say ‘no’, putting yourself first, and being mindful of your emotions as a carer.

Rezek-MindfulnessForCarers-C2W

Taking care of someone else = neglecting to take care of yourself.  Does this ring true for you?  A carer or caregiver is often prone to using all their time, energy and resources giving the person or persons the attention and support that is needed.  However, the danger that can arise is that the caring is only working in one direction.

This blog isn’t about patting you on the back, telling you that you really ought to get some rest or saying what a great job you are doing.  You know all these things already.  You should be patting yourself on the back for all that you do as well as making sure that you get enough sleep and keep your stress levels down.  The chances are you don’t do any of those things or the rest of the long list that could be tagged onto that one.  This blog is about shaking up your view of your demanding and relentless work so that you can start to put yourself at the centre of your caregiving work.

Possibly one of the most difficult issues with being a caregiver is setting boundaries.  To do this can set in motion a whole range of emotions and fears – I’m being selfish; I don’t need help; what if something happens when I’m resting or out?; how will the person manage without me?  These responses are common and, at times, come about for good reason.  To say No to someone, in any form, may seem like a mean, uncaring or unrealistic thing to do but this is not always the case.  On occasions, the caregiver’s anxieties and fears are greater than those coming from the person being cared for.  We often don’t want to admit, or even acknowledge, that our anxiety may be what is driving us to be overstretched rather than only the needs or demands of the situation.  Perhaps there are occasions when you could go out or ask someone else to take your place for a short time but you may be reluctant to do this.  Why?  What is the concern behind this?  Do you think you’ll be criticised?  Have you lost touch with so many of your friends that you don’t actually have anyone to go out with?  Is it easier being the round-the-clock caregiver than having to deal with some other issue in your life?  Does your position give you power in the family or at work that isn’t allowed to be questioned?  Does your role give you a strong sense of identity that you may not otherwise feel?  As a professional, are you needing to present in a certain way to your colleagues or do you perhaps enjoy the energy and status that may accompany the demands of the job?  These are important questions to ask yourself as without some answers you will struggle to find a place for yourself.  With all the good that is done by being the generous and attentive caregiver, it can also work against you.

Most carers don’t set out to be in that role, unless by choosing a career in it.  The vast majority of family carers are doing it because of circumstance, often thrust upon them in some harsh way.  The choices here are dramatically reduced but, in spite of that, you still have a choice about how you take care of yourself as well as the other person.

There are evident differences between being a family caregiver and a professional person who is in a helping profession.  Family carers or foster carers feel an enormous responsibility for the wellbeing, comfort and survival of their relative or foster child.  Needless to say, professional caregivers such as nurses, doctors, social workers, therapists and health assistant also feel such a sense of responsibility but there is an inevitable difference as the family ties, bonds and history aren’t there, and while loss may be felt, sometimes deeply, it is not felt in the same way or with the same level of intensity.  Professional carers go home at the end of the day, or shift, and if they don’t they ought to.

It is important to also raise the issue of being a family carer for someone with whom one does not have a good or loving relationship.  This situation is more common than most people would like to admit but the other person’s vulnerability makes it very difficult to say no or to set limits.  Caring out of a sense of duty or obligation can lead to resentment and distress.

Caregivers come in many shapes and forms and people are in those roles for as many different reasons – a parent to a sick or disabled child, a special education teacher, a hospice worker, an adult child of elderly or ill parents, a partner of chronically ill or terminal husband or wife, a young child of an ill parent, a foster carer, a medical doctor, a community nurse, a health assistant in a mental health unit, a social worker, a carer of younger siblings.  The list is endless but the demands and stress frequently similar.

The big question is how you take care of yourself and if you don’t, why not?  Burnout and fatigue can lead to physical and mental health issues.  These are damaging and you then run the risk of making mistakes, becoming unwell and, at worst, needing to be taken care of yourself.

Mindfulness is a gentle, accessible and nourishing way of reducing caregiver’s stress and increasing their wellbeing and attention.  Research has also shown how those being cared for by people using mindfulness benefit from their carers being more present and open to them.

We are human and no matter how resilient we believe we are, how physically strong we show ourselves to be or how psychologically grounded we say we are, we are still human and being human implies that we have thresholds of tolerance.  It’s not about breaking or collapsing in a heap but far more about recognising that as a caregiver you need to take care of yourself as well as the other person.

Dr Cheryl Rezek is a consultant clinical psychologist and mindfulness teacher who brings a fresh and novel approach to how mindfulness and psychological concepts can be integrated into everyone’s life as a way of managing it in the most helpful way.  She has a longstanding clinical and academic career as well as runs workshops and authors books.  You can find out more about Mindfulness for Carers, read reviews or order your copy here.

 

Twenty years of living with brain injury

Over twenty years ago, Philip Fairclough fell fifteen feet from a ladder onto a concrete patio, causing massive trauma to his head and severe brain injury. Eight years later his book, Living with Brain Injury, was published by JKP. Today, in support of Action for Brain Injury Week, Philip shares with us the progress he has made since writing the book, as well as the lessons he’s learned along the way which are sure to help anyone who has suffered head injury or cares about someone with a head injury. 

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Cover image for ‘Living with Brain Injury’

People often say, ‘Such and such crosses the divide of culture, status, sex, nationality and even religion.’ It wasn’t ’til my book, Living With Brain Injury was published by Jessica Kingsley in 2002 that I realised how brain injury crosses these divides and more – and this was despite my having previously given presentations before groups of litigators dealing with compensation for head injuries, social workers, care givers and hospital staff. It was further brought home to me by the number and types of reviews I read in magazines published here and in the States as well as the letters I have received from carers and sufferers alike.

Things I have learned which have helped me cope in every day life
In the early days, when I saw how my condition was affecting my family, I honestly felt I’d have been better dying. However, since then I’ve come to realise there is always someone far worse off than me and I tell people, now, for me every day is a bonus. Something else I’ve learned, which came as quite a shock, but helped me to try and see beyond the obvious, was understanding why the wives of some of my fellow sufferers, at the rehab unit, left them after their head injury. I remember saying to Pauline, how terrible that they should be abandoned at a most critical time in their life. Her comments on that were quite sobering. She told me that if it wasn’t for the fact that she loved me and  took her vows and our faith seriously, she might have done the same! We’ve now been married for forty two years with still some to go!

One final note on the matter of what I have learned. The OT’s at the rehab unit, from day one, stressed the importance of setting realistic goals and, having achieved them, setting some more. Though this was a strategy I had been employing for years, both as one of Jehovah’s Witnesses and as a salesman, it was an invaluable tool in helping me keep focused on the positive aspects of life and putting the negatives on one side.

Things I wish I’d known before my accident
I wish I’d realised just how dangerous window cleaning was and had taken to heart the warning I was being given by the excessive costs of insurance! Yet for all that, whilst I wouldn’t want to relive the past twenty years nor for my family to go through it all again, I have learned so much that I wouldn’t have otherwise, contributing to ways in which I have changed since before the accident. For example; though it seems that my memories of what I was really like before the accident are flawed, one thing I do remember is that I had very little empathy for people with illnesses. Though my wife had suffered with health problems for many years and I was very understanding of her, since I’d had few serious health issues since childhood, I had no understanding of how sick people felt or were treated or what they needed from others. However, that changed fairly quickly when I realised how understanding and helpful people were to me. And not just friends, family, work mates and neighbors, but even total strangers. Since, I suppose, I expected them to understand me and make allowances for me, I was forced to change my attitude towards those with health issues, regardless of how serious or trivial they appeared to be.

Philip at home after the accident, before the move to Rosehill Rehabilitation Unit. The shape of the skull was caused by the removal of a part of the bone to relieve pressure on the brain.

Philip at home after the accident, before the move to Rosehill Rehabilitation Unit. The shape of the skull was caused by the removal of a part of the bone to relieve pressure on the brain.

Changes in my health
Whereas stamina was a real problem in the beginning, my fatigue requiring me to sleep most afternoons, for the past few years I have not needed to sleep. In fact, I am awake most mornings between five and six and I often work in the garden for two or three hours without ill effect.

Since I have had no seizures for the past fifteen years, meaning that under medical supervision I have been able to cease using anticonvulsants, apart from the freedom I have gained, many of the side effects common to such medication have also ceased or been minimised. This, I feel, has made me easier to live with. You’d have to check with my wife but I think she’d agree! This has also meant I have been driving again for several years and am just in the process of becoming the policy holder for the car insurance, something I’ve not done for over twenty years. I am also no longer classed as disabled which has helped me gain back much of my self worth. I have been working part time for the past fifteen years, back in my old job of selling which is another plus. The one other thing that has changed is that my enforced retirement has allowed me more time to write. Not only have I written my book, I have also written, and had published, sixteen newspaper and magazine articles in the UK and in Malta. I have written five novels, two of which are, at present, doing the rounds with agents, a full length children’s story and I’m currently writing two spin offs from one of my novels. I am determined to get something, in fiction, published! For two reasons: 1) I want to know if people find my fiction worth reading as my non fiction and 2) Despite only having eighteen months to go before officially retiring, I would like to regain self worth from being able to once again earn money to provide for my family. Watch this space!!

Things which haven’t changed!
I still have problems, at times, grasping things which Pauline or others tell me, requiring them to explain them again, sometimes more than once. I still have problems with time telling and numeracy and I also misread situations or misperceive what I think are people’s responses to me. All these things cause me irritation,  mostly at myself when I fail to understand things, which I have difficulty hiding.

Final thoughts
I wouldn’t want anyone to get the idea that things are a push over, that head injury is something and nothing or that I’m back to normal! I know I was very fortunate compared with many. I was very fortunate in the speed at which I was dealt with and the expertise available to me that day. I am fortunate in having a family like I do and the kind of friends which we have. Much of what I have is based on determination and a positive attitude and this stems from my unswerving faith in God whom I’m convinced had a hand in my life that day since there were too many coincidences for them to be coincidences! Something else which has contributed to my recovery is that, as one of Jehovah’s Witnesses, I am active in our door to door ministry and regular bible study, all of which has not only kept me physically strong but mentally too, making my neural pathways knit that much faster!
Whether to a sufferer or a carer, my final note on this matter is as follows and you’ll find it in the last sentence in my book:

Remember: Where there is life there is hope and there is DEFINITELY life after brain injury.

You can find out more about the book, read reviews or order your copy here

On Grandma’s Box of Memories – interview with the creators

Jean Demetris was a primary school teacher for 22 years. 8 years ago her husband was diagnosed with Lewy body dementia. She dealt with many aspects of the condition, the highs and lows, and engaged with the many agencies involved in her husband’s care.
The experience inspired Jean and her illustrator son Alex to create a storybook for young children; to help them understand and talk about dementia with their families. We caught up with them both for a quick chat about the inspiration behind the book and what they hope it will achieve. 

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Q1. Where did the idea for Grandma’s Box of Memories
come from?

Jean: There were two factors that prompted the idea for the book.

Firstly, when my husband was diagnosed with Lewy Body Dementia I needed information.  I found there were plenty of books on dementia for adults and some for teenagers, but hardly any for young children.

Secondly, in my husband’s nursing home I felt there was a need for more activities and stimulation for the residents.  This made me think about what could be done to encourage residents’ families and friends to participate with the residents and involve them in engaging activities.

Taking these two factors into consideration, I came up with the idea for the book that would become Grandma’s Box of Memories.

 

Q2. How did you Alex (Jean’s son) become involved in making the book?

Alex: A few months after Dad died Mum spoke to me about her idea for the book.  I liked the sound of it, so we started work on the book’s structure and on sketching out illustrations.  Soon we had put together several sample pages and before long we were very pleased to receive a commission for the full version.

I had relatively recently graduated with an MA in Illustration from Camberwell College of the Arts for which my final project had been a comic based on my family’s experiences of Dad’s dementia. Grandma’s Box of Memories represented another opportunity to work on a subject that was close to my heart.

 

Q3. Do you have any suggestions for people on how to adjust to the changes they are likely to encounter when a family member is affected by dementia?

Jean: My experience is of a family member with Lewy Body Dementia.  Different forms of dementia have different characteristics and symptoms, so the adjustments their family and friends may need to make may be different.

Dementia should not be viewed as a stigma.  Find out as much as possible about the condition from professionals and support groups.  They will be able to advise you on available help and support, so use this to your advantage.

You must accept that you have to adjust to dealing with a changed person.  Acknowledge the limitations that dementia can cause in people.  Focus on small activities and do not expect too much of the person.  Everyday tasks such as using the telephone or cooking will become difficult for people with dementia; safety around the home becomes a priority.  Social services should help you to install devices such as gas, water and personal alarms.  You can also be creative in helping the person to remain independent using small measures such as sticky notes reminding them to lock doors, close windows, or turn off taps.

If the person with dementia is alone at home it is also helpful to arrange for friends and neighbours to drop by and check they are safe.

Personal hygiene may become problematic as reluctance to bathe or change clothes can take hold, and you may need to help with these tasks.  Initially this may cause embarrassment but it can be overcome.

Patience and understanding will win out over confrontation in dealing with situations, and a sense of humour is essential.

Should your family member need residential care, try to help make it a home from home.  Enjoy going there and participate in events such as birthday celebrations.  Engage with staff and other residents.  You will encounter people you would not normally meet, which can be rewarding.

Don’t be upset when acquaintances find it difficult to engage with the person with dementia.  Some people will naturally find the situation hard to deal with.

Your lifestyle will change, sometimes quite dramatically.  Caring for a person with dementia can be hard work emotionally and physically, but don’t be hard on yourself.  Seek help – it’s there, and find time for you.  Occasional treats are a must.

 

Q4. What do you hope young readers will gain from this book?Illustration 22

Jean: Grandma’s Box of Memories is meant to be educational and entertaining; I hope readers will enjoy the story, illustrations and characters.

The book provides children with basic but helpful information about dementia, and invites readers to suggest their own ideas for items to go in a memory box.  It might also encourage children to be creative and come up with ideas of their own to support people with dementia.

Hopefully, it will help children understand that they can be part of the caring process and share their feelings and ideas with family members.

 

Q5. What should parents remember when they are explaining dementia to younger children?

Jean: Children will be aware that something is wrong but will normally accept the diagnosis of dementia given the appropriate support.  It is natural for an adult to want to protect the child yet is important to explain what is going on in a calm and clear way.  A child may experience a range of emotions, such as sadness, anxiety, anger and confusion, and will need reassurance that adults are there for them and can offer them time for discussion, both talking and listening and encouragement to ask questions.

It is important that the child understands that dementia cannot be cured but there are ways to help the person feel loved and wanted.

 

Q6. How can children be involved in the care of family members?

Jean: Most obviously, children can pay frequent visits to the person with dementia.  During these visits they can look at books and photos with the person, chat with them, listen to music and sing and dance, draw pictures, or do simple jigsaws.  They can also share small treats such as sweets and biscuits and help to peel and share pieces of fruit.

Outings to places like local parks are another way that children can be involved in caring for someone with dementia.  Sharing simple outdoor activities like playing catch or feeding ducks is fun for everybody.

Please note: if you are in the US or Canada, you can view the book information page and order your copy here.

 

Win a copy of ‘Can I tell you about ME/Chronic Fatigue Syndrome?’ by Jacqueline Rayner

Rayner_Can-I-tell-you_978-1-84905-452-2_colourjpg-web

PLEASE NOTE – This competition has now closed, but you can still get all the latest info about new books like this one by signing up to our mailing list here.

 

We have five copies of Can I tell you about ME/Chronic Fatigue Syndrome? by Jacqueline Rayner to give away – and you could be in with a chance of winning one!

This illustrated book helps family, friends and anyone who knows someone with ME (Myalgic Encephalomyelitis) or CFS (Chronic Fatigue Syndrome) understand what it is, what it is like to have it, and how it can affect family life.

Mollie, a woman with ME/CFS, and her family explain in simple and child-friendly terms why she can’t always do things that other mums do because of her illness, which can be frustrating, and share strategies that help them all cope. The family also explain how ME/CFS can affect different people in different ways.

Rayner - can i tell you about ME - pg18 - extractTo enter, simply sign up to our mailing list here by Friday 7th March to be in with a chance of winning.

If you are lucky enough to be selected as one of the winners, why not write an online review of the book and share it with others!

Good luck!

 

The Can I tell you about…? series of books offer simple introductions to a range of limiting conditions explained from the point of view of friendly characters.

Find out more…