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

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

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

The first term involved writing a proposal for a final project.  I toyed with one or two ideas, but it eventually occurred to me that the most interesting subject I could address in my project was what had been going on in my life right then – my Dad’s illness and how my family was coping with it.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Preparing for the comic involved talking through Dad’s medical records with my Mum, internet research into Lewy Body Dementia, taking reference photos, and doing a lot of character and planning sketches.

character studies

 

 

 

 

 

 

 

 

 

 

One thing about making comics is that you can’t really edit them once you have drawn them, so it is necessary to meticulously plan out the best way to get the message across in a limited number of
panels.

During my MA I was also learning to use Photoshop as a colouring tool, so I decided to keep the colour scheme simple.  I arrived at the greenish look from some experimentation and feedback from tutors and peers, while the contrasting colouring of the Lewy Bodies and resulting hallucinations in pink developed as I progressed through the comic.Demetris- pg 7 - image

I wanted to create a comic that was entertaining but also educational, to tell a story and also to present facts about a condition that is not well known despite being pretty common.  Additionally, I think that a lot of people view the idea of having a relative in residential care as horrendous, but I wanted to show that in the case of my Dad, who was lucky enough to be admitted to an excellent home, this was not the case at all.  He seemed content and comfortable in residential care, and I enjoyed visiting him there, and seeing what the other residents and staff were up to.

I was very pleased with the final project and am very proud that it has now been properly published.  I hope that, as intended, readers will find it to be both entertaining and educational.

Find out more about the comic, read reviews and order your copy here.

You can also see more of Alex’s work on his website here

All images are copyright Singing Dragon and Alex Demetris.

Fight, flight or freeze; your body’s alarm system – author interview

K. L. Aspden has worked as a therapist with both children and adults since 1998. She has particular interest in the areas of trauma and anxiety, and she has experience working in both mainstream and special schools. She currently works in a school for children with emotional and behavioural difficulty, and is the author of Help! I’ve Got an Alarm Bell Going Off in My Head!: How Panic, Anxiety and Stress Affect Your Body.

1) What inspired you to write this book?
I work with some amazing children and teenagers, many of whom are frequently triggered into the fight/flight/freeze response. This can result in upsetting behaviours such as shouting, crying, hitting etc. They have no idea what is happening in their bodies and often feel too ashamed to talk about it, even when they are calmer. This is very sad. Having seen and heard what they go through, I wanted to write something to assure them that it is not their fault. I wanted to teach them about the physiology behind their feelings and show that there are things we can do to help ourselves.Aspden_Help-Ive-Got-an_978-1-84905-704-2_colourjpg-print
Above all I wanted to normalise this experience. Whilst we may not all react with the same intensity, everyone has an in-built ‘alarm bell’ (known as the amygdala) which can trigger powerful responses. An understanding of this can help anyone when they are going through periods of stress or anxiety.

2) Why did you decide to use the metaphor of an alarm bell?
I heard the panic response described as a ‘false alarm’ and decided to develop the idea. Alarms are so intrusive and distressing when they go off too frequently and at the wrong times – just like the overpowering feelings that can take over our bodies, minds and emotions when we are stressed. I wanted to communicate something of the jarring and disruptive effect of this through the alarm bell metaphor. I also thought it would be a non- threatening way to approach this tricky subject with my young clients.

3) You have worked as a therapist and at schools with children who have emotional and behavioural difficulties. What insight has that given you into how different people’s alarm bells work?
I think the alarm bell works in the same way for all of us, though it may affect us in different ways – could be trembling, feeling sick, withdrawing, tears, swearing…
For some people the alarm bell is set off more frequently because there are more triggers; this is especially true when trauma has occurred early in life or someone has high anxiety (for example, in autism). Children who have emotional/behavioural issues often live in a state of hyper-arousal – the alarm system is on red alert. In addition to this, they may lack the maturity or capacity to process their emotions which makes life even harder.
Those who have a stable background and an ability to reflect, often find it easier to learn to manage their responses. However, even the most vulnerable can benefit from being understood and supported by people who have an appreciation of the alarm system .

4) What triggers your alarm bell, and how do you take control back when you are feeling anxious or stressed?
Aspden - help i've got an alarm bell - pg 23 -imageOver the years I have carefully considered my own triggers and where they come from.
When I was a teenager life was much harder than it is now. Like many young people I wanted to be liked and didn’t understand that sometimes others can put you down to make themselves feel better. I was often bullied. This affected my confidence and I became reluctant to speak in groups, preferring not to be noticed. When put on the spot in a group setting, my internal alarm bell would ring loudly and I would experience a sense of wanting to disappear; lots of thoughts would rush round my head about how bad the situation was, and of course, this made me feel worse. There are occasions even now when I can revisit those feelings, but I am much more equipped to deal with them.
The thing that most often sets my alarm ringing these days is ‘technology’ – when my laptop goes wrong or I don’t know how to do something because everything changes so fast and it’s hard to keep up.
If this happens, I remind myself that I am having a ‘false alarm’. It is not a real emergency.
I also use two suggestions from the book that work quickly in any situation:

  • breathing more slowly
  •  doing a simple exercise like counting things to turn the thinking part of my brain back on.

In addition, I use Mindfulness in my everyday life (a discipline which helps to bring us back to the present moment), as well as a variety of creative activities. I find these tools are very soothing for the nervous system especially in times of stress or busyness.

5) Finally, what is the most important thing you would like readers to take away from your book?
I hope that an understanding of ‘the alarm system’ will help readers to feel more in control and more able to ask for help if they need it, without feeling embarrassed. I think a lot of people struggle because they don’’t know their difficulties are physiological.
Perhaps some readers will go further and become motivated to learn more about themselves. I would be especially pleased if they were to find the benefits of creativity in calming the nervous system, but that may be a subject for a whole new book.

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

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Young People and Drugs – What can adoptive parents do?

Julian Cohen, author of All About Drugs and Young People, is a writer, educator, counsellor and consultant who has specialised in drug and sex education work with children, young people, parents, carers and professionals for nearly 30 years. In this blog post he covers tips and advice for adoptive parents who may be concerned about their child and drugs, and there is a free extract from the book for you to read at the end of the post. 

National Adoption Week is highlighting the fact that over 4,000 children in England are waiting for adoptive parents. A significant number of these children are older, have had particularly distressing childhood experiences and have additional and complex needs. They need adoptive parents who will help them overcome their troubled backgrounds. This means consistently sticking by them through the good times and the bad, helping them to make sense of who they are and to grow up feeling safe and secure.
These children may use a range of drugs not just to have fun but in an attempt to escape from unpleasant feelings they have about themselves, past experiences and anxieties about their futures.
Adoptive parents need to be drug aware and sensitive and relaxed about how they deal with young people’s involvement with drugs. How can they go about doing this? Here are 10 suggestions to help you be prepared.

1. Be aware that we are all drug users and have a lifetime drug career. If we think of drugs as mood altering substances they include alcohol, tobacco, caffeine and medicines, as well as illegal drugs, ‘legal highs’ and other socially taboo substances such as solvents. We all self- medicate throughout our lives. The key is to promote a relatively healthy and safe drug career, rather than a damaging one. Cohen_All-About-Drugs_978-1-84905-427-0_colourjpg-web

2. Be informed – learn about drugs and their use. You don’t need an encyclopedic knowledge but you do need to know something about various drugs, the different ways they are used, possible effects and dangers. At the same time you need to avoid the many myths that often surround discussion of drugs. Read books, look on the internet and talk to other adults and to young people.

3. Be aware of your own use of drugs, both past and current, and your particular feelings about drug use. What messages is your use giving your child, why do you feel as you do and how do your views compare with and other adults you know and with young people?

4. Be realistic. Be clear about what you can expect of children of a particular age, development and background. Drug use can be dangerous but avoid exaggerating the risks. Going over the top about dangers is a sure way of closing down communication with young people. And don’t think that they always will be deterred by risky behaviours. Risk can be attractive to them. Rather than expecting they will never use drugs adopt a harm reduction approach where you can have an honest dialogue with them about what they are up to and help to ensure their safety.

5. Talk with young people and make drug use a normal topic of conversation. Use opportunities that arise from watching TV and films. Don’t rush in and tell them what to feel, think or do. Take it gently and listen to what they have to say. You may sometimes need to bite your tongue and agree to disagree.

6. Know how to assess the risks involved with young people using drugs. Take into account the particular drug they may be using, how much and how often, how they are feeling in themslef and also who they may be using with, when and where. Don’t assume the worst and be aware that heavy, regular drug use is often motivated by a desire to blank out painful emotions.

7. Negotiate sensible, age appropriate drug rules. Rather than impose rules discuss with young people what they think might be best. Start with alcohol, cigarettes, caffeine and medicines. If, what, how much and often, when, where and who with can be discussed. You can consider sanctions for breaking the rules and might also put the spotlight on your own drug use as well as theirs.

8. Educate young people about drugs. Learn together by talking and looking at drug pamphlets, books and the internet. Include learning about basic first aid so they can help other people in any emergency situations. Support their school to deliver relevant drug education.

9. Respond to situations where young people become involved with drugs without panicking, being aggressive or overly draconian. Rather than rushing to act, whenever possible create time to think carefully and find out more before responding.

10. Know where to get help, if needed. The Frank website – www.talktofrank.com – can point you to local drug services that offer information, advice and support for young people and for yourself. They also have a telephone helpline on 0300 123 6600. If you need help or advice also consider talking to your local adoption support groups and workers, other adoptive parents and your family and friends.

Remember, most young people who use drugs, including illegal and other socially taboo substances, do so without getting into serious problems. And many of those who do have problems with drugs will, in time, grow out of it. Supportive parenting can make a huge and positive difference to young people’s drug careers and their lives.

Julian Cohen

Read a free extract from Julian’s book here.

Find out more in Julian’s book All About Drugs & Young People – Essential Information and Advice for Parents and Professionals. Julian can also be contacted via his website www.juliancohen.org.uk

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First Hand Experience: Good and bad responses to self-harm from health professionals

In this frank and open post, Dr Pooky Knightsmith talks about self-harm and shares her own experiences, both good and bad, of responses from health professionals.

This post was originally shared on Pooky’s blog, here

 

Whilst it’s beyond horrible going through what I’m going through at the moment, I am learning a huge amount that will inform and motivate my work when I am better. Today I have been learning, first hand, about the stigma that surrounds self-harm. I have one very negative and one very positive story to tell.

I had an appointment with my psychologist yesterday, and he was concerned about my self-harm. Things have spiraled this week and he was concerned by the extent of some of my injuries. He felt they needed suturing and asked that I seek medical advice. I was not keen, but agreed to go.

I attended a local walk-in clinic today.   The experience was not good. On arrival, I was asked, in front of a busy room full of people, my reason for attending. I spoke quietly and was made to speak up and repeat myself more than once. The receptionist was harsh and cold, compounding every fear I had had before turning up that I may be met with stigma by health professionals (I hear stories of such stigma often in my work with young people). I sat, on the verge of panic, for 45 minutes before it became too much and I decided to go elsewhere. The receptionist questioned me loudly again as I left about why I was there, and when I asked for advice about a better time to return she was unhelpful and cold.

Unsurprisingly, the whole situation left me very, very upset, angry and ashamed; the urge to self-harm was still incredibly strong.   Thankfully, my husband (Tom) supported me through it. He suggested we go elsewhere as he knew I wanted to keep my promise to my psychologist, so I went to the GP surgery and was able to book an emergency appointment.

This experience was 100% different. The receptionist was kind and understanding. She dealt with my request matter-of-factly but also swiftly, sympathetically and quietly. She remembered me when I returned an hour later for my appointment looking worried and shaky, and she checked me in and pointed me to the waiting area (you usually check yourself in).

Already things were better. The receptionist told me exactly how long I’d be waiting, which wasn’t long. The GP was hugely understanding; she remembered me from the week before and asked after my grandfather, whose appointment she’d remembered me from. She recalled that he had just moved in with me and I was leading on his care, and she suggested a need for me to care for myself first. She looked at my injuries and discussed them with me without judgement, only with care. She explained which ones should have had sutures, but also told me that it was too late. She told me what to do differently next time so as to access the care that my wounds needed, and reminded me (as my psychologist had) that, whilst I felt I deserved to scar and was not motivated to aid healing now,  I needed to accept that this might change and a little more care with any future wounds would leave me with more options.

She also noted that I was shaky, and that this was because she thought I was developing an infection in some of my wounds. She prescribed antibiotics which I must take four times a day with no food for 45 minutes before or after. She noted my anorexia and spoke with me matter-of-factly about whether the antibiotic regime was likely to be harmful to my meal planning. We discussed how it might work. At no point did I feel ashamed or embarrassed, or that I needed to hide anything.

The GP was kind, caring, reassuring and direct. I felt looked after. I was not made to feel ashamed and I understood for the first time the extent of my injuries, which was a bit of a wakeup call.

So, a good experience and a bad experience.

But imagine that I was not me. Imagine I had not been stubborn in seeking help because I had promised Tom and my psychologist. Imagine I had not had the relentless support of my caring husband and wider support network. Imagine I was a scared child. What are the chances I would have tried again when the help was not appropriate the first time? I think the chances are very slim. I think I would have walked away and never returned. I would have walked away with infections developing and no insight into how to better care for myself in future.

So, what next… I have given Tom my blades. He is keeping them, and if I need them he will give them to me if he is not able to help me work through the situation. I feel confident that he will always be able to help me – and could have helped me in the past, save that I did not have the wherewithal to ask in those very difficult moments. Now I will have a motivation to ask and to accept his amazing support. It is a lot to ask of a husband, but he does it willingly. I do not underestimate how lucky I am.

Today has taught me first-hand just how much difference our experiences with healthcare professionals can make to our willingness and ability to access care. This is not a job I am well enough to tackle right now, but you can bet your bottom dollar it is going on my to-do list for when I am feeling better. Improving awareness and understanding of self-harm is one of the jobs I have done most often and most successfully in the last 24 months, but I now need to think how best to reach as many health professionals as possible. All suggestions gladly accepted…

As you’ll have noted, I’m working hard to be open and honest about my current battles with my mental health. I hope that this will prove a helpful insight for my network and, whilst I am regretfully too unwell to fulfill many of the engagements in my diary, I hope that you will support me on my journey back to health and help me to learn lessons along the way which will inform my future mental health work.

 

Dr Pooky Knightsmith completed her PhD in child and adolescent mental health at the Institute of Psychiatry, London, where she specialised in developing practical strategies for supporting self-harm and eating disorders in schools and other non-clinical settings. The strategies that Pooky advocates through her freelance work are all developed as a result of direct consultation with school staff and students, and she also seeks inspiration from her clinical colleagues at the world famous Maudsley Hospital, adapting and simplifying evidence based approaches for use by non-specialists. In addition to freelance training, speaking and writing, Pooky is currently the mental health and emotional wellbeing advisor at the PSHE Association, an associate trainer for the Charlie Waller Memorial trust, a trustee of Beat, the eating disorders charity and a trustee of the Kidstime Foundation which supports children of parents with mental health issues.

You can find out about Pooky’s book Self-Harm and Eating Disorders in Schools here

Or to find out more about Pooky’s work, visit her blog here

FASD: A life-long neurodevelopmental disability that needs to be SEEN

Liam Curran is a PhD INDI Social Sciences student at Concordia University, Montreal, Canada. He has over 25 years’ experience working with young people in residential homes, child and family social work and children’s disability services social work, and is also a member of the McGill University Centre for Research on Child and Families (CRCF), Montreal, Canada. In this post, he explains the biggest obstacle for many children with FASDs and those supporting them – having their disability acknowledged so they can access much needed support, and suggests how we can improve diagnosis and support for people with FASD.
You can find out more about FASD, how it affects individuals, how it can be identified, and how best to support those with FASD in Liam’s co-authored book, 
Understanding Fetal Alcohol Spectrum Disorder: A Guide to FASD for Parents, Carers and Professionals.

A life-long neurodevelopmental disability that needs to be SEEN

It has long been established that Fetal Alcohol Spectrum Disorders (FASDs) have a significant impact on all aspects of child welfare provision. Perhaps one of the most recognised publications of the modern times was developed on the evidence of eight children suffering from ‘failure to thrive’ in the Washington Child Welfare system, who were taken by social workers to the clinic of paediatricians, Dr David Jones and Dr Ken Smith. The rest is well known thanks to the paper written by Smith & Jones which became a seminal moment in society’s understanding of fetal alcohol, launching a robust level of research and public interest around the world.

Understanding Fetal Alcohol Spectrum Disorder coverThere is still a compelling need for child protection and welfare services to recognise the burden and impact of FASD on the services they provide. Recognition can aide the prevention of this disability, when allied health personnel become champions of change by imparting the ‘no safe level of alcohol consumption in pregnancy’. When responding to this ‘compelling need’, it is imperative that we consider our current principles surrounding a child’s security and overall development. In intervening for cases of health-related or educational neglect, it is also important to consider the neurodevelopmental factors associated with FASD. As stated in the opening paragraph, the eight children taken to the Washington clinic in the early 70’s were initially labelled with a ‘failure to thrive’; neglect and FASD can be finely intertwined, and require astute skills for Social Work personnel to differentiate.

Perhaps intervention by social workers is required when the caregiver cannot control/manage the behaviour of the young person in their care. FASD has long been seen as a significant concern in the area of a child’s development; problems identified in these children include immaturity leading to behavioural, social and academic challenges when set against the normal developmental milestones of developmental expectations. Poor self-regulation and sensory integration is equally well acknowledged within this cohort of children and such developmental deviation and subtle abnormality can have a significant impact on how the child manages the day to day expectations within a regulated society. Sadly, these children commonly present in child welfare intake systems, but their neurodevelopmental/neurocognitive disability is rarely seen and acted upon. Both neglect and behavioural problems are usually among the two highest categories of concern referred to state systems of child welfare and protection, and it’s within these two categories that FASD is most common.

It is also important to acknowledge the cumulative effect of yearly estimates of FASD births and how this impacts on child welfare services. In the UK, the yearly estimates of FASD births is set at 7,000. As child welfare services are delivered for children age 0-18, the cumulative number of births would be 126,000 across this age span of childcare provision. With a large body of evidence pointing to 50-60% of children born with an FASD condition entering the child welfare services, there can be no argument that FASD is having a disastrous but largely unseen impact on the service. Equally, what research has repeatedly shown and demonstrated is that the prevalence rates of FASDs lands on both our fostering and adoption communities. This in turn will lead to a fiscal burden carried by the child care providers of such services, demonstrated again in a large body of research findings.

Professional acceptance of FASDs’ neurodevelopmental and neurobehavioral presentation is vital to providing the support needed to these children and caregivers. The range of psychosocial interventions that have a proven success rate with these children are required to be common place in social work education modules of child & family teachings. Equally, these skills need to be honed in competency based education provided by employer organisations as part of service development goals.

How can we improve the trajectory and prospects of children suffering prenatal alcohol exposure?

  • National policy advisors need to implement FASD as a recognised disability within disability legalization and policy developments.
  • Currently available early intervention specialist services need to have the skills and training to Identify, Screen & Refer children for clinical assessment
  • Improve the service accessibility of individuals and their caregivers in accessing state services of supports.
  • FASD competency education should become mandatory in state services of professional development protocols.
  • Link current state education strategies on alcohol harm should be altered to firmly include the prevention and understanding of FASD within society.
  • The Social Work profession needs to reclaim, and become a stronger advocate for, the psychosocial needs of both the individuals and caregivers of those living with this disability.

There is a pressing need for this unseen disability to be recognized and acted upon in all aspects of child welfare interventions. Failure to do so is casting these children into a range of secondary disabilities, where they struggle in life with homelessness, mental illness, addiction and clashes with the criminal justice systems.  How can this be achieved?

In order for social work professionals to become stronger advocates, they need to be supported in their skill development on a number of levels.

  • The disability of FASD needs to be fully taught within social work undergraduate education by the university bodies responsible for developing future social workers.
  • All child welfare and child protection service providers who are responsible for professional development of their workforces to commission professional FASD education modules from providers qualified to deliver such education
  • Equally for Social Work to function effectively in responding to FASD, they need FASD as a health disorder to be understood by allied health professionals, policy makers and the public in general.

You can find out more about Liam’s book Understanding Fetal Alcohol Spectrum Disorder: A Guide to FASD for Parents, Carers and Professionals, read reviews and order your copy here.

Six steps to finding balance in busy lives

It is important to know that life imbalance is one of the biggest causes of stress in the western world; consequently understanding why we experience imbalance in our modern lives, and finding strategies to help you overcome it, is very useful! Teena Clouston shares 6 steps to finding balance in busy lives from her new book Challenging Stress, Burnout and Rust-out.

Clouston-ChallengingStress-C2W

So what is burnout and rust-out?

Burnout and rust-out are caused by long-term stress; burnout is marked by exhaustion and rust-out by apathy and disengagement. Which of these we experience and when, is variable, dependent on the unique individual and his or her circumstances. Stress and imbalance can be linked to some specific personality traits and thinking patterns that we can unconsciously adopt to manage the daily grind but which, unwittingly, can maintain our state of imbalance and levels of stress.  For example, people who rush around like busy bees, or those that put up with or make excuses for their busyness and overwork are all using different strategies to deal with life conflicts, pressures and time scarcity, but sadly, are failing to diminish stress. Alternatively those that fight back and overcome these pressures seem to be able to live a far more balanced and healthy life because they dare to challenge the status quo and take time to do things they find meaningful or enjoy doing, irrespective of the pressures of work or general over-busyness.

coulston 1

Resistance is not futile

 

6 steps to achieve a healthy work-life balance

There are several different ideas shared in the book but if I had to choose 6 they would be:

  • Gain some autonomy over your workload
  • Review and adapt your views and attitudes about work so they become congruent with what you really want in life
  • Share your daily responsibilities with others
  • Do something meaningful everyday
  • Live in the moment
  • Walk in nature

These techniques are not a cure-all in terms of work-life or indeed, more general life balance. That’s because, in reality, they all need you to put in a lot of effort in terms of making changes in how you live your life everyday, and that is not easy. For example, if you are going to use mindfulness techniques to try to focus on the moment or cognitive behavioural strategies to change your thinking or attitudes about life balance, then you have to practice that regularly and put some work in every day. That said, you do need to start somewhere and from small moves big things can grow and consequently, with practice, you can really change your sense of balance, your quality of life and ultimately, your well-being; thus practice may not make perfect, as the saying goes,  but it can make life just a little richer and more satisfying.

coulston 2

Illustrations by Peter Cronin, ARSMA.

Teena J. Clouston is a Reader in Occupational Therapy and Life Balance at the School of Healthcare Sciences at Cardiff University, UK. Over the last ten years, her research interests have become focused on the meaning and experience of lifestyle balance, and her PhD specifically studied the influences of paid work on finding balance in everyday life. Learn more about Challenging Stress, Burnout and Rust-out 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.

Kinsella-IntroducingMentalHealth-C2W

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.