Book Reviews

We continue to add books to this section. If there is a particular book you would like to see included, let us know at info@mycarematters.org.

Reducing the Symptoms of Alzheimer’s Disease and other Dementias

A Guide to Personal Cognitive Rehabilitation Techniques   (JKP Press 2019)

By Jackie Pool

The culmination of a life’s work, this book is full of advice to help you or your loved ones manage the wide-ranging symptoms of dementia, with practical information, clear explanations and innovative solutions to a huge variety of dementia-related issues. Jackie Pool has almost forty years’ experience in this field and was keen to share her knowledge and research with anyone facing a diagnosis, offering support and guidance and dispelling the many myths that surround the condition.

This book appealed to me not only because I know and admire Jackie Pool, but because she has clearly put so much of herself into its pages. It is far more than just a self-help reference book, at times it’s a deeply personal and autobiographical account of her own experiences in dementia care. Jackie skilfully guides us through the minefields of psychological theory and scientific research to ensure we are empowered in our understanding of the disease and therefore able to approach the symptoms with greater creativity, hope and positivity.

 

If we understand the changes happening in our brains, or those of our loved ones, then we are far less likely to feel anxious and vulnerable, knowledge is power. Jackie draws on many personal examples to shine a light on a huge number of topics from maximising sleep quality, to improving communication, understanding the role of prescription drugs, maintaining personal care, and exploring the different types of memory.

Using the latest cognitive rehabilitation techniques Jackie explains how our brains have the capacity to ‘re-learn’ old skills and master new ones, ‘bypassing’ the damage using a process called ‘Rementia’, a term originally coined by the late, great, Tom Kitwood. It is fascinating to read about Jackie’s eight-year dialogue with Professor Kitwood via a series of letters she initiated due to her concern that the more holistic ‘social’ approach mustn’t be at the expense of maintaining and enhancing cognitive function.

As a skilled occupational therapist, Jackie has always understood that the key to living well with dementia is to be given the tools necessary to keep active, engaged and as independent as possible rather than become prematurely de-skilled or ‘dis-abled’ by relinquishing too much and having everything done for you. The writer, Wendy Mitchell, has often said that if she lived with a partner, she would have struggled to have maintained the independent skills she still enjoys. We are all guilty of ‘doing’ too much for someone we care for simply because we feel we ought to, its quicker or feels safer to do so, when actually giving someone the tools to, for example, make their own cup of tea or dress themselves, is of far greater benefit both physically and emotionally.

Jackie is not afraid to broach some complex topics in this book including neuroplasticity, delirium, cognition and the science of nutrition, but in all these areas we are invited to simply take as much information as we need to further our own understanding with plenty of pointers to extend our reading and helpful infographics to make the content even more accessible. The latter part of the book provides some useful templates for making daily plans and aspirational targets including examples from Jackie’s own PAL (Pool Activity Level) instrument.

Throughout this book, Jackie never loses her conversational style, it succeeds in being an informative companion guide and one I would hugely recommend for anyone living with dementia or supporting others to live as well as they can with the condition.

By Anna C. Park

 

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Dementia, Sex and Wellbeing

by Danuta Lipinska

Danuta has over 30 years experience supporting families, teaching, counselling and consulting on adult sexuality and dementia care. In this guide she brings her wealth of knowledge and insight to the fore, helping us to understand the cognitive impact of a dementia diagnosis on intimacy and relationships, and reminding us that our sexual identities and needs remain an integral part of who we are.

Her friendly conversational style makes this an incredibly enjoyable read as she expertly draws on her life’s work to aid our understanding of sexual behaviours as simply responses to a need for sensuality and intimacy rather than a ‘problem’ to be managed. The key message that our body and brain are one and ‘we separate them at our peril’ is central to this understanding. All our experiences, feelings, intimate moments and dreams are remembered by our bodies as much as our brains – therefore a dementia diagnosis does not mean a loss of physical knowledge and memory. A person can still consent to sexual intimacy without needing to know what day of the week it is because they still ‘know’ their husband and remember how it feels to be with them.

This is an illuminating read which embraces science, philosophy, psychotherapy and spirituality to help us to be more inclusive and self-aware in our conversations around sex and intimacy. After each chapter there are ‘Points for Reflection’ to guide discussions and chart shifts in our own understanding and responses. It highlights a real need for openness around sexuality and identity, someone may well reveal their true sexual self, following a move into care, after years of enforced repression. As Sally Knocker says in her Afterword: ‘It is rare to read a book where you feel that you have been in a very deep and meaningful conversation with its author…I love the fact that this is not about people living with dementia as somehow different or separate, it is a book about all of us and what it means to be vibrant sexual and sensual beings.’

Reviewed by Anna C. Park. Published by and available from Jessica Kingsley Publishers

 

Dear Life

by Rachel Clarke

Palliative medicine is Dr Clarke’s second career; her first as a journalist gave her the skills to evoke the kindness, joy and tenderness seen every day in a hospice, where death should dominate yet it is love and life itself that take centre stage.

Described as a love letter – to her GP father dying of cancer, to a profession where Dr Clarke helps people live the end of their lives as fully and richly as possible, to life itself – this is a beautifully written story of love and loss, invoking laughter and tears in equal parts.

Published Jan 30th 2020. Available from Amazon.

 

Watching the Leaves Dance

by Graham StokesWatching the Leaves Dance

As Keith Oliver writes in his Foreword, “Watching the Leaves Dance takes us once again, not into the realm of patients, carers or service users but into the lives of people…”. People, not their dementia, are again at the heart of this next volume of stories by Graham Stokes. People with histories, childhood experiences, family influences, all of which make us the person we become… and who we remain, even if dementia claims us. As Professor Stokes says, ‘dementia care does not exist. Instead, we must accept that we care for people with dementia.”
Professor Stokes has often had to look deep into peoples’ pasts to find the clues to their current behaviour, behaviour that may have been causing significant distress to themselves and those around them. Within each of these eighteen stories there are valuable insights wrapped in humanity: Cathy and Jimmy for example, teach us that good care is not measured by flawless appearances, we learn from Maria to be alert to the potential risks of reminiscence therapy, from Gillian and Spencer that dementia has no bearing on our need for closeness, touch and affection, and from Suzy to check the bus timetable before attempting to impose culture change in a care home. This book has something to say to anyone with even the loosest connections to dementia, and that, after all, is most of us. Be prepared to shed tears.
Published by and available from Hawker Publications Ltd.

Caregiver Carols: A Musical, Emotional Memoir

Caregiver Carols snipby Dr Don Wendorf

Dr Wendorf brings his combined experiences of phsychologist and psychotherapist, musician and caregiver to his wife of 40 years in this moving, informative, creative and practical memoir. Searingly honest at times, the author is prepared to tackle the toughest aspects of being a caregiver: guilt (a ‘good, normal, healthy emotion’), the ongoing sense of bereavement (‘I’ve been in denial about being in mourning’), how to accept help (‘don’t deny other loving people the blessing of being able to serve, comfort, support, help, care for, love and give to you’) and perhaps the toughest one of all, the impact illness can have on a couple’s intimate relationship.

The author blends a mix of song lyric rhyming verses with accompanying prose commentaries to make it easier, more effective and more memorable to get his messages across than the ‘standard didactic approach’. In describing his own emotional struggles as a caregiver, Dr Wendorf hopes to encourage other caregivers that their own feelings are tough but normal and manageable and that they are not alone.

Dementia: The One-Stop Guide

by June AndrewsDementia by June Andrews

I’ve had the privilege of hearing Professor June Andrews present at a number of conferences and have always enjoyed her unique mix of down-to-earth practical approach to dementia care and refreshing sense of humour, so I was delighted to see the same attributes appear on the pages of this invaluable book.

Advertised as ‘practical advice for families, professionals, and people living with dementia and Alzheimer’s Disease’, one might think it a little ambitious, attempting to be all things to all people, but I would defy anyone in those groups mentioned to read it and say they learned nothing. No subject is taboo, there’s lots of myth-busting and advice on how to negotiate a system which, the author acknowledges, all too often lets people down, plus comments from carers, professionals and those living with varying forms of dementia. If you’re looking for a jargon-free easy read, packed with practical information for anyone dealing with dementia in the UK and flashes of good humour to lighten the message, this is the book for you.

Click here to purchase from Amazon

On Pluto: Inside the Mind of Alzheimer’s

by Greg O’BrienOn Pluto front cover

Journalist Greg O’Brien writes powerfully about his ten year journey – so far – with Alzheimer’s. There are a number of laugh out loud moments as he paints a vivid picture of his daily struggles to find coping mechanisms and strategies to circumvent the disease that is determined to trip him up, and which will, he knows, eventually send him to Pluto, his allegory for the end stages of Alzheimer’s Disease. On every page O’Brien demonstrates how he is living with dementia, not dying from it.

Click here to purchase from Amazon

 

The Things Between Us – Living Words: Anthology 1

Living Words cover“Like dipping into a basin of water, and trying to hold the droplets in your hands as you splash your face with pure joy”. So says the late Lynda Bellingham in her resounding endorsement of this wonderful anthology of poems and words, collected from people living with dementia.

The charity Living Words has worked with people with dementia since 2007. As Founder and Artistic Director Susanna Howard says, when a person hears their words read back to them their sense of well-being and personhood is elevated…

Click here to purchase from Living Words

Dancing with Dementia

by Christine BrydenDancing with Dementia web

Author Christine Bryden continues to lead an active life and in May 2015 it will be an incredible 20 years since her diagnosis of dementia.

Christine was a top civil servant and single mother of three children when she received her diagnosis at the age of 46. ‘Dancing with Dementia’ is a vivid account of how she dealt with that life-changing news, exploring the effects of memory problems, loss of independence, difficulties in communication and the exhaustion of coping with simple tasks. She describes how, with the support of her husband Paul, she continues to lead an active life despite her dementia and explains how professionals and carers can help.

Click here for further information and ways to purchase.

 

 

Person-centred Dementia Care. Making services Better.

by Dawn BrookerPerson-centred dementia care

This was the first book I read about dementia care when my husband had to move to a care home in 2009 with advanced dementia and complex needs, and its value and relevance for anyone involved in providing care shone out immediately. Refreshingly honest and down-to-earth, Professor Brooker questions whether all providers who claim to offer person-centred care truly reflect the values that should lie behind this overused and misused term. She describes her book as an attempt to articulate the different elements of person-centred care and to describe what these look like in practice.

Frequently referring to Tom Kitwood as her inspiration, Dawn Brooker  explains the four key elements of person centred care that comprise the VIPS model: Valuing people with dementia and those who care for them (V); treating people as Individuals (I); looking at the world from the Perspective of the person with dementia (P); and a positive Social environment in which the person living with dementia can experience relative well being (S).

With an emphasis on practical application, Person Centred Dementia Care provides care organisations with clear, accessible guidelines on how to put the VIPS model into operation for effective care that is `fit for VIPs’. Part 2 of the book comprises the VIPS organisational reflection tool, which care providers can use to assess how well they think they are doing at providing person-centred care.

Click here for further information and to purchase.

 

The Bright Side / The Other Side

by Kate GrangerThe Bright Side Kate GrangerThe Other Side Kate Granger

Most people reading this will have heard of Dr Kate Granger, and of her struggle to live as normal a life as possible under the shadow of a terminal cancer diagnosis. As famous as the doctor herself is her inspirational ‘#HelloMyNameIs…’ campaign to encourage all health care staff to introduce themselves to their patients before delivering care. As Kate says on her website, introducing oneself is much more than just providing a name: it is making a human connection, beginning a therapeutic relationship, building trust.

Kate’s first book, ‘The Other Side’ is riddled with technical terms and medical-speak, making it quite clear which audience she wants to reach. Self-published, with all profits going to the Yorkshire Cancer Centre and orders being handled by Kate and her husband Chris so as to maximise the revenue for YCC, it reflects very much the author as she describes herself: ‘slightly bossy, competent but compassionate’ and no sign of the person she fears some will see her as: ‘that poor girl dying of cancer’. For us lay people, Kate has thoughtfully provides a glossary of terms, but one doesn’t need to understand the jargon to get the message. This is a doctor telling it how it is on the other side. Or, to put it another way, this is a patient with medical knowledge describing the progression of her illness, details of her treatment, and making it quite clear what worked and what didn’t in the huge variety of approaches and attitudes she experienced from her professional colleagues.

I read both books from cover to cover with barely a break, hauled in trepidation along Kate’s journey with a mixture of emotions, feeling her frustration when the medics got it wrong, delighting with her when she experienced compassionate, kind and intelligent care, reduced to tears when she, rarely, appears overwhelmed by pain and the desperate nature of her situation.

Being able to return to work allowed Kate to put into practice the things she had learned as a patient: proper communication – finding the right balance to avoid being patronising or confusing; getting the little things right such as getting on the same level as your patient when talking to them; remembering that you are treating a human being and not just a medical condition. It is clear from reviews and from Kate’s own comments that doctors and other healthcare staff have also adjusted their behaviour as a result of reading Kate’s books. I’d say they need to be on the compulsory reading list of every single healthcare professional.

This link will take you to Kate’s website where her books are available for purchase.

And Still the Music Plays. Stories of People with Dementia

by Graham Stokesand still the music plays web

Dr Graham Stokes has written a number of books on the subject of dementia care, but this is no ordinary instruction manual. Instead, the author recounts 22 compelling stories of people with dementia and looks beyond the obvious in an attempt to explain why some behave in the way they do.

You will read about Mr Abrahams who came alive when touched by human contact, how a window into Mrs S’s world opened when staff came to understand her aversion to shared toilets, and how Lucy’s quality of life was transformed when it was discovered what caused her to shout for hour after hour.

The central theme is that everyone is unique, and it is only by thinking deeply about each person individually that we can give the best possible care.

Click here for further information and to purchase.

 

Dear Dementia: The laughter and the tears

by Ian Donaghydear dementia web

As author Ian Donaghy says, “Dementia is an uninvited guest. It does not discriminate and is often merciless… but there is still laughter to be heard.” These short letters and over 100 illustrations, with their simple yet powerful messages, provide many opportunities for people to laugh and to cry, to learn and to ponder.  They are based on Ian’s own experiences and conversations with people living with dementia and their friends and family, including children.

This is a delightful book which has at its core a heartfelt plea that we focus on the person and not the dementia.

Click here for further information and to purchase.


Supporting Eating and Drinking – Resource for Carers

Eating and Drinking Guidance for Carers

This booklet has been designed for all who support someone living with the later stages of dementia. It has been developed by a leading team of researchers and health & social care professionals including GP’s, speech & language therapists and palliative care experts. It has also taken into consideration the views and experiences of people with dementia. 

As dementia (and diseases like multiple sclerosis) advance, it is typical for people to experience difficulties around eating, drinking and swallowing. This booklet explains the physical and psychological reasons for these issues and offers a comprehensive series of strategies and resources to support carers & guide their discussions with key health professionals.  

With helpful tips on nutrition, how to offer food/drink and when to seek help, it also includes topics ranging from oral health to end of life hydration. An invaluable resource that has clearly been developed with considerable input from a leading team of experts in the field. 

Click here to download

In conversation with Anna Park

I first met Anna through the dementia care awards, when I was one of the judges and she was representing one of the shortlisted companies. Impressed by her passion and drive, I started to follow Anna on Twitter, and soon saw how she brings that same passion and drive to the wide range of issues that she cares about, whether it’s nature, dementia care or circle dancing!

So I’m delighted that Anna is now working with us to improve people’s experience of care, and I’m sure you’ll find her comments and observations here as insightful and thought-provoking as I did.

What first drew you to the world of care?

I think it has to be said that experiencing a vicarage childhood meant care homes, hospitals and hospices were familiar places to me from an early age. This no doubt gave me an understanding of life’s challenges, an ability to sit and talk to anyone and a determination to always try and see the person and listen to their stories rather than focus on appearances or diagnoses.

During my degree, I had a wonderful placement teaching in a special school and a summer volunteering in a day centre for young adults with learning disabilities. I had fully expected to train as an English teacher and specialise in SEN but these experiences and a temporary position working in a Mencap group home changed my direction and shaped my understanding of what person-centred care could and shouldn’t look like. I realised then that there was far more needing to be done to train and support adults in care than I could achieve in the mainstream classroom.

I went on to take the position of a Day Services Social Worker in a Multi-Purpose Day Centre where I joined a fabulous team of passionate creatives who fully recognised the value and contribution of every individual. There was a clear focus on self-advocacy, accessing the arts and fulfilling individual potential. For eight years I ran sessions in collaborative song-writing, IT/magazine production, symbol/communication techniques, skills for work as well as dance and drama performances for all ages and abilities. The aim was always to support people to develop the skills and confidence to create, express themselves and fulfil long term goals.

The opportunity to install and assess the learning opportunities provided by a new interactive sensory music & coloured light system became the subject of my Post Grad study (P.G.C.P.C.E) and led to my next position as a consultant and trainer at OptiMusic and later OM Interactive. It was my work developing the Mobii interactive table that would further immerse me in the world of dementia care.

From a family viewpoint I was also being drawn into the world of care through the experiences of my grandparents, one on each side developing dementia whilst in their 80s. My Grandad’s lifeline in care was continuing to play his keyboard, having spent his whole life playing the organ for his local church. For my Grandma, a teacher, collector and keen gardener, it was important that she was surrounded by familiar objects and photos and had essential access to a garden. I continue to advocate the vital importance of fresh air and nature to anyone who will listen! The years my Mother worked as a care home relief manager also gave me an insight into the daily demands and rewards of life working in a care home.

You work / have worked with some other great organisations, can you tell us a bit more?

Yes, my work with sensory technology, from the mid 90s onwards, led to some exciting collaborations working alongside the creators of the first interactive musical light beams (OptiMusic) and then pioneering the use of interactive projection technology in dementia care (OM Interactive). I had always been passionate that music and the arts should be accessible by everyone, and my Post Graduate research evidenced the enormous benefits of using technology to give people creative control.

It has been exciting to be part of a new era in person-centred technology, I thoroughly enjoyed developing the content and purpose of the Mobii interactive table and researching its effect on people’s emotional and physical wellbeing. It was very humbling to have this work acknowledged as the Most Outstanding Product at the Dementia Care Awards in 2018.

However, my years in sensory product development have also taught me the huge importance of training, care culture and emotional intelligence. Any interactive tool relies on the skills and abilities of those using it, the more person-centred the session delivery, the greater the response. No product can be a ‘fix all’, they have to be in the right hands, our carers are still our greatest resource.

I have been very lucky to meet some incredible people in the world of dementia care. I was particularly honoured to be asked to become a Special Adviser (Learning Disability Inclusion and Technology) for NAPA last year. NAPA (The National Activity Providers Association) is a charity who do so much to support and promote the delivery of meaningful activities in care with quality resources, training & guidance, newsletters/magazines, a helpline, annual conference and a fabulous awards ceremony; recognising the skills and dedication of care staff nationally. So I was more than delighted to join the NAPA team in a voluntary capacity.

Intergenerational work and exposing ageism are areas I am particularly passionate about, there is so much we can learn and gift to one another over the life course. As a Trustee of the charity Ready Generations I’m looking forward to encouraging greater connection across all generations with innovative community projects, an intergenerational nursery in a care home and research-led investigations aiming to shift perspectives and value the contributions of everyone.

As a teacher I still enjoy piano tutoring, particularly when that means re-igniting someone’s passion for playing. I have weekly sessions with a lady who is living with vascular dementia which have been both moving and joyful for both of us. I also call ceilidhs and barn dances as Hedgerow Tipple, which for me is the perfect way to share my love of music and dance with all ages and abilities.

What is it about Mycarematters that made you agree to work with us?

I have admired your mission to improve the experience of care since we first met at the National Dementia Care Awards in 2018. Your determination to ensure the needs of your late husband were made known to all staff in his care homes and hospital resonated so strongly with me. Having also lost a close family member to a progressive disease I understood the daily challenge of ensuring care remained person-centred when speech had virtually gone. Our family experienced the same frustrations and miscommunications whilst also recognising the difficulties staff faced when vital information was locked away in a file on an office shelf.

Honouring someone’s personal preferences can make the difference between a good day and a bad day. We experienced first-hand the consequences of information not being passed on with one oversight by cover staff sadly leading to a serious injury.  We would certainly have used Remember-I’m-Me Care Charts if we had known about them at the time. It’s so important for all carers to have an at-a-glance snapshot of needs and preferences and for families to be reassured that what’s important for their loved ones is actively shared and understood.

I also believe that Mycarematters profiles are important for encouraging conversation and connection, a reminder to always acknowledge the person directly and explain what’s happening rather than carrying out physical care tasks in silence. As a supporter of the Butterfly Approach I believe sharing this sort of information is essential for maintaining a sense of identity and belonging. We made sure that Sarah’s O.T certificate was above her bed alongside important photos including one of her proudly completing a helicopter flying lesson. These insights help carers to see the person behind the condition and talk about things that will be meaningful for them.

More recently I have been impressed by the My Future Care Handbook, an interactive guide which we personally found useful when navigating difficult conversations with my Mother-in-law, helping us to record her care and end of life preferences. A fabulous piece of work that everyone should be encouraged to complete for peace of mind about the future!

As a not-for-profit social enterprise I admire the ethos of Mycarematters and fully support their aim to celebrate the work of other small organisations who similarly strive to improve the care experience for all. So plenty of reasons to want to join the team!

What have you got planned for Mycarematters and its customers?

Well, firstly I hope to build on the fabulous work that’s already been done by continuing to raise awareness of our social enterprise and its mission to provide solutions, training and resources to improve the experience of care.

I also plan to expand our offering by inviting partner organisations to showcase their products, guides and training resources, because there is so much good work out there that deserves a wider audience. My monthly newsletter will help to keep our customers informed of our latest additions with specialist insights and our latest news and product updates.

I’d love to see Mycarematters become a hub of excellence, a first point of call for our care providers to source reliable information and a wide variety of tried and tested tools to help them deliver person-centred care to the people they support.

I’m also very conscious that Rogers & Kitwood’s term ‘person-centred care’ is in danger of being watered down through over-use, becoming synonymous with simply ‘caring’. I think it’s vital for us to focus on what it truly means i.e. to place someone at the ‘centre’ of their care, to see the world from their viewpoint and imagine how they are feeling; to literally climb into their chair. I’m reminded of Sara Livadeas becoming a resident in a Fremantle Trust care home when she was appointed CEO. A fabulous way to try and understand how it felt to live in one of their homes.

As the newest member of the team I’m conscious that any fresh initiatives will stay true to the Mycarematters ethos, supporting people in care to always feel included, valued and their presence acknowledged, regardless of cognitive or communication difficulties.

I look forward to supporting all our customers, sharing their stories and acting on any feedback so we can continue to improve the quality of our products and services. Carers, both paid and unpaid, are doing the most incredible work everyday, they are the greatest resource of all and our aim must be to support them with the right tools and guidance to carry out their important work to the best of their ability so the caring experience is better for everyone.

 

What does ‘planning for later life’ mean to you?

Planning for later life
A spectrum of needs
It has become quite fashionable these days to apply the concept of a spectrum – traditionally considered in terms of autism (as in being on the autistic spectrum) – to many aspects of our lives. So whether we’re talking about our sexuality, character traits or intelligence, there is a recognition that we may not conveniently fit into one category or another. Having a strong dislike of boxes and labels, I rather like this loosening of definitions, and I’m not surprised to find it true of people’s position on planning for later life as well.

People’s priorities differ wildly as to what is important when discussing the future, so asking what matters to them regarding later life inevitably throws up a huge variety of responses. They might be discussing appropriate adjustments to their home with an occupational therapist but have never considered what level of treatment they want if they get ill. Someone else may already have gone round the local care homes, picked out their favourite and got an Advance Decision in place but is in no hurry to appoint a power of attorney.

How far, and in which direction
There is also huge divergence in where the boundary lies as to how far people are prepared to take the conversation, and in which direction. “I’m not prepared to think about dying but I know exactly what music I want played at my funeral”, “I know I should… I’ll get round to it one day”, “No thanks, it’s not something I’m prepared to talk about”, “I must get this done now, before I need it”, “I’ve got it all sorted and my family know exactly what I want” and so it goes on.

No surprise then that attempts to increase the numbers of people completing advance care plans meet with limited success, when the forms tend to focus on collecting information the healthcare system would like to know, and may fail altogether to address the issues that are important to the individual.

Our approach with the My Future Care Handbook has essentially been one of: ‘Here is the information you need to make some informed decisions about your future, and the tools to act on those decisions. It is now within your power to choose which decisions and actions you wish to take, and when’.

We have aimed to cover everything, with a clear message that not all sections are relevant to everyone. From feedback received it seems there are a variety of approaches taken in terms of how it is used: some like to start at the beginning and work through to the end, others flick through and use the page markers to identify the sections they want to focus on first, and then there are those who dip in and do a bit at a time.

Keeping the scope as wide as possible makes it potentially relevant for every adult, regardless of age or state of health, and that approach was welcomed by Wendy Mitchell. “The front cover does not say it’s for people with dementia, people with cancer, people that are dying. The front cover is saying it’s for everybody.”
That wide remit called for input from a wide range of experts, both professional and by experience. So we were extremely fortunate to have a large group of people give generously of their time to help shape the content, tone and format of the Handbook, and it is undoubtedly the richer for it.

A thousand voices (well, a hundred anyway)

The value of this diversity of input was one of the themes to emerge during a Zoom chat with a group of people living with dementia, who had kindly put the Handbook through its paces.

As Agnes Houston put it: “it’s very clear this wasn’t done by a medical professional alone. The carers voices are through it, the voices of the people with long term conditions are through it. That’s what makes it so precious. You usually either get a carer’s view or a professional medical view or you get the view of the person with the long term condition. This is the first time I’ve ever seen anything where it is so, so inclusive. “

Wendy Mitchell agreed: “You can tell the minute you start looking through it that it’s not healthcare professional led and that immediately brings you in because it’s not some official thing that you are being told to read.”

That’s such valuable feedback for us, because we knew it would not be enough to provide a fact-filled resource, it had to be something that was going to get those of us reluctant to consider our future (and that’s, let’s face it, most of us) to make a start.

Alison Barclay, carer of her husband Gordon who lives with dementia, admits she’s a procrastinator and would rather do housework than start planning for later life… and she hates housework! But even she acknowledged that ‘if this book doesn’t get me doing it then nothing will.”

Sarah Reed, founder of REAL Communication Works, found she’d completed five or six pages before she’d even noticed. “It’s just so easy to follow. I’ve been thinking about my own will, my own needs… and what was surprising was how easy it was. Filling in a form on a page where you are being asked straightforward questions just makes it so simple. But if someone had asked me what I want, I wouldn’t have the faintest idea!

I didn’t realise…

This is something we frequently hear about one or more of the topics covered in the Handbook, and often from people who thought they’d covered most things. Alison didn’t realise there are now doulas for dying as well as for birthing. Wendy remembered she had not updated both her daughters about her funeral preferences, Frances found it made her think of things she hadn’t considered before.

Person-centred…
Because the Handbook is designed as an interactive workbook, what you end up with is a set of documents and decisions that are unique to you, reflecting your wishes, needs and aspirations for later life, end of life and beyond.

So, one size fits all? That’s perhaps going too far, but what we can say with confidence is that there’s something for everyone in the My Future Care Handbook, and whether you just fancy creating a bucket list, want to prepare a complete Advance Care Plan or need a prop to take the awkwardness out of the conversation with a loved one, all the feedback tells us it will work for you.

Order here. We are happy to send you a single copy for your personal use, or multiple copies for your organisation for your staff or clients.

Photo by Alex Block on Unsplash

Death and dying, not a laughing matter?

In my household this weekend we’ve been talking about what music we’d like at our respective funerals – we’ve even discussed that if we were to die during this pandemic it’s more likely that it would be a memorial service at some point in the future, because funerals can’t take place the way we’d like right now. I haven’t had such a good laugh in weeks!

Like many others, the current situation has made us consider our own mortality, and it’s obviously no laughing matter. On the other hand, why not inject a bit of humour into the conversation, if it helps us tackle what can be a very uncomfortable subject? (Besides which, having a laugh is apparently one of the best things we can do for our health!)

It won’t surprise you to hear that, as editor of the recently published My Future Care Handbook, I do actually have a power of attorney appointed, my will is written, I have a Mycarematters profile, an advance statement and an advance directive all in place. It would have been a bit odd not to have practised what I preach but I have to confess, it was done as much in the name of research as for the need to have these things in place.

But having gone through the process, there is something extremely comforting about knowing that my partner and daughters will not have the stress of trying to decide what I would have wanted, either before or after my death. I’d like to think it is a long way off, and I may well change my mind about some of the decisions I’ve made but that’s OK, it’s easy to do that now that I’m familiar with the various documents.

What I highlight in the Handbook is that there is no need to tackle it all in one go, but it’s never too soon to make a start. And if you are living with a life limiting illness like dementia or caring for someone who is, there are some tasks like appointing a power of attorney that can make a huge difference in helping life run smoothly in the future.

Whilst we laughed at some of our more extreme choices of funeral music I’m not going to pretend that talking about death is all fun, and I recognise that some people find it more difficult than others, that’s just the way of things. If you wish to start thinking about this, for yourself or a member of family, find a way that works for you. Perhaps it’s talking about what’s on your bucket list, or who’s going to feed the pets if you have an unexpected stay in hospital.

There are lots of decisions you can make regarding your future without a healthcare professional, but some, such as when it might be appropriate to reject further treatment or your preferred place to die, may need a conversation with someone such as your GP.

We all know GPs are busy people and never more so than now (though their current challenge is generally more about their numbers being depleted due to the need to self-isolate) but you can help them by thinking through the issues first and then call them for their professional advice and support. Face to face consultations are rare at the moment and it is difficult to have a wideranging discussion over the phone, but even addressing one or two key issues can lead to improved peace of mind for you and your family.

Order a printed copy of the Handbook here: https://www.carechartsuk.co.uk/store/myfuturecare/my-future-care-handbook/

The My Future Care Handbook is published by Mycarematters 2020 CIC, a not-for-profit social enterprise. 100% of any profit made is re-invested into developing and delivering services and products to help improve people’s experience of care.

This blog was written by Zoe Harris, carer for her late husband Geoff who lived with dementia, creator of the Remember-I’m-Me Care Charts, Mycarematters and editor of the My Future Care Handbook.

Should a care home choose Mycarematters Care Charts or Profiles?

Care Charts v Mycarematters

For those care homes looking to improve their person-centred care there are now two tools to help which appear, at first glance, to be doing the same thing: providing a quick at-a-glance view of a person’s needs and preferences in their room. Both systems ensure that all members of staff and visiting professionals interacting with a resident are quickly aware of the small things that can make a big difference. Both have won awards for the simple and effective way in which they assist delivery of person-centred care.

Where they differ is in how the information is collected and shared. The Care Charts have a laminated surface on which information can be written, wiped off and updated whenever required. Mycarematters profiles are created / updated online and printed out.

There are pros and cons for both systems, but the one significant advantage of Mycarematters Profiles is that they can easily be shared with other services. The simplest way is to supply a printout, but it is also quick and easy for anyone with the person’s name, date of birth and Mycarematters code to retrieve a person’s profile from online. So when a hospital phones to ask for information about one of your residents because the printout has gone missing, you can just provide the resident’s Mycarematters code and point hospital staff in the direction of the online facility.

There are other benefits offered by Mycarematters Profiles. There is space to add information about Advance Care Plans, DNARs, Power of Attorney for each resident and more, providing a central record of information that is quick and convenient to access when needed. You will be able to give family members access to their relative’s profile so they can view and contribute to the information held.

People like to work in different ways so what works best for one environment is not necessarily the best for another. It may be appropriate to use both: hang a laminated chart in your residents’ bedrooms for updating by hand, and create online profiles that can go with a resident in the event they need a stay in hospital.

Whichever method you choose, you’ll be helping your staff and others to better meet a person’s needs when they are unable to express those things for themselves: enabling everyone interacting with them to engage in meaningful conversation, to know their likes and dislikes, to make an emotional connection. It’s the least they deserve.

Contact us to chat through the options and special offers available.

Report highlights person-centred care as key factor in treating depression

A joint report from the British Geriatrics Society and the Royal College of Psychiatrists has been published which showcases examples of best practice. The illustrations flow from effective interdisciplinary practice in treating depression in older people living in care homes.

The aim of the ‘Depression among older people living in care homes’ report is to explore the ways in which geriatricians, old age psychiatrists and allied health professionals are working together to overcome the specific challenges that arise when treating depression in older people living in this community.

Access the full report here…

What causes that frightening world of hallucinations?

Judith Pott’s mother, Esme, was terrified that the faceless people who sat on her sofa and the gargoyle-like creature that hopped from table to chair meant she had some form of mental illness. Neither her GP nor her optometrist had ever heard of Charles Bonnet Syndrome (CBS)…

Judith explains:

Charles Bonnet Syndrome (CBS) is a serious side-effect of sight loss. In a person of any age who has lost over 60% of vision (which is halfway down the optometrist’s chart) from any eye disease, stroke, cancer, diabetes or accident, it produces vivid, silent, visual hallucinations which range from disturbing to terrifying.

For far too long, ophthalmologists have been well aware of CBS but have dismissed it too lightly and not warned patients that it might develop.  It might not, but forewarned is forearmed and should a giant rat scurry across the floor, it helps a little to know that this is probably due to CBS.

No one warned my late Mother – Esme – and she, like so many before and after her, lived in silence in her frightening world of hallucinations, fearing that they might be due to a mental illness. When she did, finally, break her silence and described to me the faceless people who sat on her sofa, the tear-stained Victorian street-child who followed her everywhere and the hideous gargoyle-like creature who hopped from table to chair – plus the times when the whole room or garden morphed into somewhere completely different – I was conscious of the word ‘dementia’ hanging in the air.

With a huge piece of luck, I read a tiny paragraph in a newspaper, which could have been written by Esme. With great relief, I contacted her ophthalmologist – who refused to discuss CBS; her GP who had never heard of it – and thought it ‘unlikely’; and her optometrist – who was equally unaware of the condition. The internet seemed to be the only answer and there I found Dr Dominic ffytche at King’s College London who was – and still is – the sole globally acknowledged expert on CBS.  He explained to me that when sight is diminished or lost, the messages from the retina to the brain slow or stop but the brain – instead of quietening down – fires up and produces images of its own.  What is seen – people, children, animals, insects, rodents, vehicles, grotesque faces, landscapes, fire, water, patterns, colours, whole scenes – depends on which part of the brain is firing.  He helped me to work out some coping strategies for Esme, which – along with reassurance – are the only treatments available.  The strategies give temporary relief but, for the rest of her life, Esme was plagued by hallucinations. As yet, there are no medical consultants who specialise in CBS.

It was obvious that awareness of CBS and the negative affect it has on the lives of those who experience it needed a wider audience.  In November 2015 I launched Esme’s Umbrella(www.charlesbonnetsyndrome.uk) at the House of Commons, with Dr Dominic ffytche as my medical adviser.  It became apparent immediately that there were many more people in need of support than anyone had realised and my newly founded campaign was inundated with calls to the Helpline – 0345 051 3925 (which is answered, courtesy of The Help and Information Service, 24 hours a day every day) and emails (esmesumbrella@gmail.com). We now estimate that there could be up to three quarters of a million people living with CBS.

The calls and emails continue at an escalating rate and, last year, Esme’s Umbrella made some giant strides.  First of all, Fight for Sight (the only UK eye charity that does research into every eye condition) offered me a Restricted Fund under its auspices.  Donations can be made via Just Giving (https://www.justgiving.com/fundraising/EsmesUmbrella or by cheque, written to Fight for Sight with FOR ESME’S UMBRELLA on the back and sent to Fight for Sight, 18 Mansell Street, London E1 8AA.  All the money is guaranteed to be spent on CBS research only.

With the financial help of Fight for Sight and The Thomas Pocklington Trust, I was able to appoint a researcher.  Dr Greg Elder will work with Dr John-Paul Taylor (whose focus is already on CBS) at Newcastle University, both in conjunction with Dr Dominic ffytche, who continues his work at King’s London.

Esme’s Umbrella was given an official CBS Awareness Day on which Dr ffytche and I met a group of 40 people with CBS and heard their support needs. Out of this meeting came my mission for 2018, which is to find funders or sponsors willing to offer space and time, for Esme Room Support Groups. Eventually, I would like to include specialist nurses, counsellors and relaxation therapists too. Exchanging experiences over a cup of tea helps the isolation CBS causes.

Consultants at Moorfields Eye Hospital will host the first-ever CBS Patient Study Day in 2018.  This will bring CBS into the open as never before and no one will be able to dismiss it as ‘just a side effect’.

Lastly, at the invitation of the President of the Royal College of Ophthalmologists, I have been invited to speak at the Royal College’s Congress in Liverpool in May. I will be emphasising the need to give a warning about CBS  and encourage patients to confide about their hallucinations.

If you need support, please do not live in silence, contact Esme’s Umbrella.

                                                            JUDITH POTTS – Founder of Esme’s Umbrella

How difficult can it be to draw a star?

I was introduced to this little exercise at a recent regional Dementia Action Alliance meeting, and thought others might also find it useful; care home managers may like to do it with their staff.

Click here to print a star on to both sides of enough sheets of paper to provide one to each person, and on one side invite them to draw an unbroken line between the two stars, thereby drawing a third star, without taking their pen off the paper. They are unlikely to find that too difficult. Then, ask them to turn it over, position a mirror (you’ll find suitable ones in Poundland apparently!) at the top of the paper on the table in front of them so that the star is in view in the mirror, and ask them to do the same thing, but this time only looking in the mirror.

The idea is to create a sense of what it must be like to live with dementia where you are unable to complete what seems like a simple task. Don’t be surprised to see people experience shame, embarrassment, frustration, irritation, impatience… exactly what people living with dementia experience every day.

Please Tell Me… a new Life Story book

We are often told that nothing can beat our Care Charts for getting information in front of everyone interacting with a person, but that’s not to say the learning should stop there. Our charts provide a snap-shot, at-a-glance view of a person’s needs and preferences, but should not be thought of as a replacement for life story work.
Regardless of whether it is family or staff members who spend time with a person to collect their memories and what matters to them now, the process can be extremely rewarding for both parties. And that information can of course help carers provide personalised and appropriate care, either in someone’s home or in a care home.
So we were very excited to see John’s Campaign new book Please Tell Me… a place to help someone share a childhood memory, the words of a favourite song, what made them happy in their early years. It is designed to follow the chronology of the person’s life, and the open questions provide opportunities for conversations.

Available as single books or in packs of 10. Click here to purchase…