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.

 

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.

The Adoption Checklist: Are You Ready?

L. Gianforte, co-author of Keeping Your Adoptive Family Strong: Strategies for Success, addresses the critical importance of reviewing whether or not you’re ready to adopt.

As difficult as it is to acknowledge and accept, not everyone is a good candidate for being an adoptive parent. Some folks have more patience, stamina, and resilience than others, and the presence or absence of these qualities must be factored in before proceeding with an adoption plan. At the very least, parents must be willing to face the full spectrum of negative possibilities—however distressing and depressing they may be—before they move forward. A willingness to look at the realities of taking in a bruised and broken child is a fundamental requirement if successful integration is going to take place.

A traumatized child, no matter how young, is not a tabula rasa just waiting for a new mommy and daddy to imprint him with positive experiences. Instead, he has already been marked by abuse and/or neglect that can cause a host of difficult-to-deal-with behaviors. This history must be acknowledged and addressed by prospective parents if there is to be any hope of building a functional family, and there is absolutely no room for denial.

To maximize their chances of success, adoptive parents must see themselves as agents of change. It’s perfectly fine to hold on to preconceived expectations of what parenthood will be like (as long as you don’t come crashing down if the fantasies fall apart), but you must also acknowledge and address the child’s negative experiences. While it might be difficult and seem nonsensical to keep the past in the present, it remains the most effective way to rise to the challenges that seem to suddenly pop up out of nowhere, again and again and again.

IS ADOPTION RIGHT FOR YOU?

So—who’s good at this and who’s not? Providing honest answers to the following questions is a good start toward finding out.

Do you take a child’s bad behavior or acting out as a personal affront?

In many cases, children who have been abandoned by their birth parents believe they are not worthy of being loved. This belief can be so firmly imprinted that a child will do everything he can to prove that it’s true. He will behave badly to reinforce the notion, testing the limits at every possibility. His goal is to generate parental anger, which is either equated with love or used to reinforce his belief that he is, in fact, unlovable.

When a child does something horrid and it appears to be intentional, it’s human nature to take such offenses personally. But keep in mind that treating people well is a learned behavior. When parents do it, their children mimic it. When they don’t do it, neither do their offspring. When a child who has not witnessed or experienced basic respect is uprooted and deposited in a nice home with kind parents, he will not automatically become a kind person. He will push and test and act out just because he can.

You will suffer needlessly if you take his acting out to heart, because the slaps in the face will be far too frequent and much too painful. It is therefore important to remove yourself from the equation—emotionally, at least—and be sensitive to what motivates the child. This is about him, not you.

Do you believe that love conquers all?

Real life is not a romance novel. It is not a fairy tale. The good guys don’t always win, and bad things happen to good people. When the sun sets on a particularly horrendous day, a hug from a loved one may feel pretty terrific, but it doesn’t necessarily ease all the pain. While love is an essential component of a healthy life, it isn’t an all-encompassing solution to every problem.

When prospective parents think about adopting a child, they often see variations of the same scenario. A sad, abused child sits alone—his eyes huge and pleading, his sweet little face etched with misery. His family has been mean to him, people who are supposed to love him have hurt him, and all he wishes for is a loving mommy and daddy to come along and save him from his wretched plight. Sigh. Won’t you come soon and save me? And so he waits.

In fact, the phrase “waiting child” is often used by foster and adoption agencies, because these two simple words tug at the heartstrings. But the truth is, the child isn’t waiting. Not for you, not for anyone. He’s more likely trying to figure out what he can do simply to make it through one more day.

Cameron’s birth mother was a practicing drug addict who frequently chose getting high over caring for her children. He vividly recalls watching her tie a piece of rubber tubing around her upper arm to prepare for an injection. He had witnessed this ritual enough times to know that once the needle hit the vein, he would lose his mother for hours—even days.

Does it appear that this child had even the remotest opportunity to fantasize about getting a new, loving family? Did he have the luxury of wandering off into a quiet corner to wish and wait? For Cameron and other children like him, it’s all about survival.

Are you anti-meds?

Some parents simply do not believe in medicating children. Citing instances of inaccurate diagnoses and physicians who are quick to overprescribe, they draw a definitive line in the sand. No drugs. Not for my kid. Ever.

While their accusations often have merit, they are not universally true. What about the 7-year-old boy who cannot focus long enough to complete a homework assignment or finish a meal? What about the 4-year-old girl whose rage is so out of control that she screams most of her waking hours?

Prescription drugs often provide solutions that make a world of difference. To be sure, it’s a tough choice to make, but it’s often the right choice.

At the suggestion of a therapist, Sally started her adopted daughter on medication. Eliza was born addicted to cocaine, and she was constantly restless, irritable, and filled with rage. From the moment she gave Eliza her first pill, Sally diligently watched her child for signs of change. Three days later, Eliza walked into Sally’s study with a beaming smile on her face. As she flung herself into her mother’s arms, the three words she uttered said it all: “I happy, Mommy.”

Have you thought about the effect adoption will have on all members of your family?

If there are no other children in your home, feel free to skip this section. But if you are planning to bring a hurt child into a family with children already in place, you might want to linger here awhile.

The addition of an adopted child affects everyone. It makes no difference if the other children in the family are birth kids or adoptees, if they’re healthy and adjusted or fragile and struggling. The new child does not discriminate, and he shares his pain and dysfunction with parents and with siblings, with the weak and with the strong.

If there are other children in your home, you must carefully consider the answers to these questions before adopting:

  • What, if anything, will they gain by the addition of a new child?
  • What might they lose?
  • How will they react to the anger directed at their parents by the newcomer?
  • What will their friends think, and how will they handle any criticism?
  • If the birth order is changed by adoption, how might the kids feel about losing their position in the family hierarchy?

It’s not just about you and the new kid. There are other lives to consider.

Really—what are your expectations?

It is important to carefully examine your intentions when you decide to adopt. If you are trying to fill some sort of personal void, you’re setting yourself up for disappointment. You should not adopt so your only son or daughter can have a playmate. You should not adopt because you have three girls and would love to add a little boy. Your expectations will likely go unmet, and it is not the adopted child’s role to meet your needs in the first place. He can barely be who he is, much less become the manifestation of a pre-conceived fantasy.

As critical as what you expect from your adopted child is what you expect from yourself. Do you assume you will parent him in the same way that you parented your birth children? Do you think he will respond to you just like they have? Do you believe you can spontaneously jump into parenting without taking into consideration how your behaviors and interactions will be received by the adopted child?

We cannot stress enough the importance of looking deep inside yourself and providing honest answers. Trust us when we say that any adopted child will be better served by parents who truly know what they’re getting into and are fully prepared to face the challenges.

If you’re not there now, it does not necessarily follow that adoption is out of the question for you. With some focused work, you may be able to make the personal and attitudinal changes that can better equip you for the undertaking. You can’t force it, but it just might happen. After all, the human spirit is powerful, and determination is a mighty dynamic.

Why one growing up talk is not enough…

Growing up Guide

Davida Hartman is a Senior Educational Psychologist who has been working with children and adolescents with Autism Spectrum Disorder for fifteen years. Author of the two new books The Growing Up Guide for Girls and The Growing Up Guide for Boys, Davida shares her top ten tips for parents to help guide their children through the confusing changes during the pre-teen and teenage years.

 

 

 

Who remembers how they learned about growing up and all that comes with it; body changes, hair growth, periods, wet dreams or dating? Was it in the school yard, from a less than well-intentioned sibling or being sat down by an embarrassed parent for a speech that made no sense and was never to be spoken again? Although we all no doubt found Hartman_Growing-Up-Book_978-1-84905-575-8_colourjpg-print

the whole thing a bit confusing and sometimes downright worrying, eventually most of us managed to muddle through it all without too much trauma.

You can take it as a given that children on the autism spectrum will find all of this stuff even more difficult to figure out. And let’s face it – as tempting as it may be to follow in our parents footsteps and either ignore it completely or give a once-off talk and never have to think about it again, any parent of a child with autism knows that talking about it once is going to make very little difference to their child being able to change a sanitary pad or finding the motivation to shower every day.

So if a one off ‘talk’ isn’t going to cut it, what will? Here are 10 tips:

  1. Decide what your key messages are going to be and be prepared to repeat them a lot. Don’t be too ambitious, you can always pick new key messages at a later stage.
  2. Get their teacher on board with the same key messages so that there can be even more repetition in a different environment (such as school).
  3. Fake it till you make it! No matter how embarrassed or uncomfortable you might feel, try your best to give the information clearly and calmly using a positive, upbeat tone of voice.
  4. Be concrete and use correct terminology (i.e. not made up names that nobody outside of the family will understand). Also be careful about language being taken literally (e.g. that boys’ voices do not literally ‘break’).
  5. Keep it visual. This might mean reducing language, focussing on pictures and single words, using social stories or visual schedules or perhaps adding speech or thought bubbles to comic type graphics. If your child learns best through PECS (Picture Exchange Communication System) teach them that way, likewise if they learn best through social stories. Visual organisers such as relationship circles or timelines can also be really useful.
  6. Use this information to create a ‘growing up’ scrapbook or folder which can be reviewed regularly. This can be added to and adapted as the child gets older and will be meaningful as it can contain pictures and information relevant to them, e.g. pictures of members of their family growing from a baby into an adult.
  7. If you are going to buy resources to help you, be aware of the confusing graphics and language that are sometimes used and make them difficult to be understood by a child with ASD. Be sure to use information that is presented in a clear, visual and factual way that your child will understand.The Growing Up Guide for Girls - Image p.48
  8. Special interests are a great way of making learning interesting, fun and meaningful. For example, if your child loves a particular superhero, create problem-solving scenarios in which the superhero figures out what to do in areas that your child is struggling with (e.g. appropriate touch with strangers).
  9. If you are lucky enough to have them on board, using peers and siblings can be an extremely valuable teaching tool. In the teenage years children tend to pay more attention to what their peers say about a particular topic than their parents or teachers. For example, you could decide to get an older sister or next door neighbour on board to talk to your daughter about the dangers of internet dating. Or a small group of carefully chosen boys could be taught how to sensitively support your son to learn about the importance of good body odour and washing.
  10. Provide real life practice, like role plays and supported experiences in community (e.g. going to the shop to pick a deodorant they like). Children on the spectrum can be very good at learning by rote what they should do in a certain situation (e.g. being able to list internet safety rules or what to say to a girl they like), but can have difficulty applying this knowledge when it matters. Real life practice is vital!

 

 

Davida Hartman is a Senior Educational Psychologist in the Developmental and ASD Psychology Department for Carlow and Kilkenny, Irish Health Service Executive. She is a regular lecturer and trainer on sexuality and relationship education for children with ASD and consults to a number of different groups and agencies. She has been working with children and adolescents with ASD for fifteen years in the capacity of a psychologist and a teacher. Davida received her undergraduate degree in Psychology from Trinity College Dublin, her MA in Educational Psychology from University College Dublin, and she is a Registered Psychologist with the Psychological Society of Ireland (PSI).

Read more about Davida’s new books The Growing Up Guide for Girls and The Growing Up Guide for Boys.

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Browse our latest collection of Special Educational Needs and Pastoral Education books for 2015

For more information on any of the books inside, simply click the title or book cover to view the full book page.  

To receive a print version of this brochure; contact us at hello@jkp.com

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.

A new one day course on the 5P approach from Linda Miller

Linda Miller Powerpoint

Course: Using the 5P Approach to prevent and manage behaviour difficulties

Date: Wednesday 1st July 2015, LONDON at the British Psychological Society Head Offices.

This is a practical one day course which will get you thinking differently about autism and behaviour and provide you with a toolkit to use time and time again. The course provides an overview of the 5P Approach Framework featured in Linda Miller’s book Practical Behaviour Management Solutions for Children and Teens with Autism and how to use it within your setting. Using the distinctive traffic light colours, it introduces the concept of Staying GREEN – adopting a preventative and positive approach to intervention ( by creating a GREEN Zone) and also looks at what to do when things go wrong – practical problem-solving and planning at Amber & Red using the 5P Approach problem-solving pathway. Using a consultation model, this course places an emphasis on how the 5P Approach can be used with individuals, with groups and also at organisational level. Delegates will have practical experience of completing each stage of the 5P Approach in readiness for use within their own setting and will be introduced to a range of practical resources and strategies which form part of the 5P Approach framework.

 

You can book your ticket HERE or go to the www.5papproach.co.uk for more information

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Linda Miller is also the author of Developing Flexibility Skills in Children and Teens with Autism which is available through Jessica Kingsley Publishers

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.

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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.

 

Helping traumatised children let go of control

9781849057608 (1)In this extract from Helping Children Affected by Parental Substance Abuse, author Tonia Caselman talks about the importance of giving children and young adults a safe space where they can let go of control and shed their feelings of responsibility. Following an in-depth exploration of how victims of parental substance abuse feel about control and responsibility, you’ll find two activities that will help you carry out direct work on an individual and group level.

Read the extract now

 

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

 

In Remembrance of My Co-Author and the Journey of a Lifetime

L. (Elle) Gianforte shares a tribute to her co-author Gregory C. Keck, who passed away suddenly before Keeping Your Adoptive Family Strong: Strategies for Success was published, and  includes some of the back story of their collaboration.

“We need to write a book together.”

“I know! I feel the same way. But what kind?”

“An adoption book? A psychological thriller?”

“I’m game for either one. Quite honestly, it doesn’t matter what it’s about. We’re just such a great team. We have to do this.”

“I couldn’t agree more.”

This is a variation of the conversation that Greg Keck and I had repeatedly since 2008, when I edited his third book, Parenting Adopted Adolescents. Greg and I met in the early ‘90s when we were both on the board of directors of ATTACh (Association for Treatment and Training in the Attachment of Children). Although our professions were different—he a world-renowned adoption expert and I a writer—we were both parents to two adopted sons. More important than that, we were friends from the start.

In 1995, Greg asked me to edit his first book, Adopting the Hurt Child, which he co-wrote with Regina Kupecky. Seven years later, I went to work in the same capacity on their second book, Parenting the Hurt Child. By the time Greg went solo with book number three, our writing team was firmly sealed.

“There’s a publisher in London who’s expressed interest in a book about traumatized children. Wanna do it with me?”

“I’m in!”

And so our dream of writing a book together—just the two of us as co-authors—was realized, and Keeping Your Adoptive Family Strong was born.

When I finally adjusted to the thrill of this joint venture, I began to think about potential problems. Greg lived in Ohio, and I’m in California. How could we possibly collaborate on a book when we were nearly 2,500 miles apart? Surely we’d have to meet face to face to brainstorm at least a few times throughout the process. It could be difficult. It could be expensive. It could be a logistical nightmare.

And what about the voice? How could two people with such different styles from such diverse professional disciplines tell a cohesive story? Surely the individual voices would constantly bump into one another and knock each other over. It could be complicated. It could be frustrating. It could be a complete disaster.

In truth, none of those fears ever became realities. Greg and I went from book proposal to finished manuscript without ever once connecting in person. We began work on the proposal in March of last year and wrapped up the final chapter in October. We developed a process that was simple, symbiotic, and seamless. He wrote, I wrote, and we wove the parts together. Our rhythm became so fluid that it was impossible to tell where one voice left off and the other began. We hit our stride with the very first step and maintained the pace throughout.

We constantly marveled at how connected we were. How easy the process was. How well the book was unfolding. We exchanged dozens of virtual pats on the back because we were just so damn proud of what we had created. In phone conversations and emails, we fast-forwarded to the day when the book would be published and we could celebrate in style—and in person.

On January 21, 2015—mere days after our manuscript had gone through the copyediting process—Greg passed away suddenly. The shock wave that reverberated among his family and friends and throughout the adoption community was profound. This brilliant, sensitive, and funny man, who touched thousands of lives and brought clarity and hope to countless families, was gone.

I miss my writing partner. I miss the laughter we shared on a regular basis. I miss the sound of his voice on the phone. Most of all, I miss my friend.

When a manuscript is finished, the authors have the pleasure of writing their acknowledgments. I always think of this as the best part, because it presents an opportunity to thank all the people who contributed to the development of the book. When Greg was still alive, I wrote, “Saving the best for last, I thank my co-author, Greg Keck, for including me in this project. You are so talented and knowledgeable, and working with you is always a fabulous ride. I truly believe we’re the best team ever!”

Re-reading that tribute today makes me smile, because it allows me to revisit the amazing journey we took together. I will always carry Greg in my heart, and I hope he is in a place where he can still, in some way, share the celebration of our book’s release.

Just before he died, Greg expressed concern about the final stages of the production process.

“That’s just not what I do,” he said, when we received the editorial query. “I look at all the questions and it overwhelms me.”

I, on the other hand, am anal, detail oriented, and a lover of minutiae. I have been known to thrive on nitpicking, as our JKP team will confirm. In my last phone conversation with Greg, I let him know there was no need to worry.

“I’ll take it from here, buddy. I’ve got this.”