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.


Picture News Care – Resources to stimulate engaging discussions

Using positive news to help care home residents re-visit their past and bring purpose to the ‘here and now’…

The Picture News Story – where it began

The dedicated team at Picture News have been providing current affairs resources to spark meaningful discussion for young people in schools since 2017. They are passionate about supporting children to find their voice and help them to develop their character, talents and personal interests. When they reached out to residents in care homes last year with an intergenerational Hearts for Homes project, they saw how their resources brought similar benefits and value to older generations too, thus Picture News Care was born.

Picture News education and care home packs are written using the same themes, questions and information so that children and care home residents can connect sharing ideas and views together. As the intergenerational charity Ready Generations explains; ‘Resources can be used to bring generations together promoting relational connection and life-long learning through inclusive activities that value everyone’s contribution.’

What Activity Resources does Picture News Care include?

(All the resources are digital format/printable).

Firstly there is a big question poster with an engaging image and a positive news story to enable staff to lead an informal discussion with residents.

The News resource offers a range of different topics to stimulate personal interests, encourage the sharing of personal viewpoints, spark memories and think about what is happening in the world with open-ended questions.

There are two further resources:

The first is a themed activity sheet with word games, a quiz or crossword.

The second is a page of sensory suggestions to stimulate residents who may find it difficult to engage in discussion. The resources use NAPA’s colour coding levels so that activity coordinators can pitch the resources to their residents’ abilities and level of participation.

Barchester Case Study

”When Pauline Davies, resident at Barchester’s Tandridge Heights, read an article in the Picture News Care newspaper about UK National Service post World War II, it reignited her sense of purpose. Her late husband John did his National Service at the same time as one of the recruits mentioned in the article, so she wrote to us with questions about him. Kelly, a carer told us, “It inspired Pauline to write about her own experiences and memories of her time during the war and her life since the war. It has become a very interesting read for all of us here at Tandridge Heights. Pauline has said it has kept her busy and her mind off this awful pandemic, so thank you so much!”

 

Case Study Two

”Christine Robson from York is bursting with chat when I meet up with her at a social distance. Married to Barry for almost 60 years, every conversation links to past memories. It has been in the news that BT are reviving red phone boxes across UK. Many have been reused for miniature libraries, a tiny museum on Scarborough seafront and homes for defibrillators in remote villages. Christine is keen to tell me that she didn’t have a phone at home until she moved home after college. She can still recall the polite voice of the speaking clock telling her, ‘At the third stroke, it will be…’ Her obvious creative streak is reignited when she chooses our additional drawing activity to design an impressive mini flower shop. Christine was a successful professional designer for more than 50 years, she tells me fondly.’

Sue Edwards, Picture News Care Consultant

If you’d like to claim your Free Picture News Care Resource for two weeks online supply please email:

hello@picture-news-care.co.uk

Please use the subject heading: ‘Mycarematters Free Offer

 

 

Designing Clothes with Dementia in Mind

Innovations to improve quality of life 

As a social enterprise, Mycarematters actively supports small companies and organisations whose mission is to improve quality of life for anyone with long term health issues and their care giver/partner. Sara Smith neé Harris’s own experience of caring for a loved one with dementia led her to create her own clothing range designed to overcome many of the difficulties she had encountered when assisting with dressing and struggling to find stylish but practical alternatives.

The Story of Roaringly Precious

Roaringly Precious is an inclusive clothing company, specifically designing clothing for people living with cognitive and mobility challenges. The company was born when Sara, designer and founder, spent time caring for loved ones facing the challenges of dementia. She became frustrated with the lack of fashionable, easy to wear clothing available to help people maintain their sense of style and independence whilst providing for their specific needs. She decided to use her degree in textiles and costume design to do something about it.

All the Roaringly Precious garments have subtly built-in adaptations to make dressing easier. They use specific sizing rules, with loose fit styles that still fit and flatter the body. Some examples of their adaptations are larger openings without low necklines, easy fastenings and garments that are made to be worn either way so they never look back to front. These changes improve the dressing experience and promote independence and dignity.

We believe every person deserves the right to feel good about themselves and the clothes they are wearing.’

They consciously offer a smaller selection of styles but in a wide range of fabric choices so the clothing remains familiar to wear, whilst allowing people choice to express their taste and colourway preferences. They are a person-centred brand, interested in only providing purposeful products that will improve quality of life.

We work to support peoples’ abilities and skills, empowering and enabling them so their opinions are heard, their feelings are known, and their style and individuality is seen. We endeavour to provide inclusive clothing that solves issues, eases struggle, and provides people with a sense of comfort and enjoyment.’  Sara Harris

If you’d like to visit Roaringly Precious to see their latest clothing range please click here. And if you’d like to place an order, use Code MCM5 to claim your 5% discount.

Taking a Fresh Look at your Outside Space

Debbie Carroll and Mark Rendell are therapeutic garden designers who encourage care settings to take a fresh look at their care practices in order to engage actively and meaningfully with their outside spaces.

 

 

 

 

 

 

 

 

A few years ago they under-took an extensive research project to understand why care setting gardens were not used more actively, even when designed to the latest guidance, and particularly for dementia care settings.

This project took them on an extraordinary, and at times challenging, journey into understanding that the role of an organisation’s practices, attitudes and beliefs, its ‘care culture’, were key to understanding the level of engagement that residents had with their outside spaces.

Step Change Design Ltd was formed to uniquely support both the Care and Design sectors by sharing these findings.

Why Don’t We Go Into the Garden’ Map & Handbook  (including free infographic poster)

This in-depth diagnostic programme offers care settings a practical way of understanding what is hindering engagement to outdoor spaces, and guides them to see what physical and cultural changes are needed to ensure a new garden design will support meaningful daily access.

The map visually shows how to plan a route forward to a more relationship-centred way of working where the garden is more of an extension to a home/care setting all year round. This ‘tool’ will also support garden designers to create a more dementia friendly garden in relation to current care practices.

Purchase the ‘Why Don’t We Go Into the Garden’ Map, handbook & infographic here

The ‘Why Don’t We Go Into the Garden’  A3 lnfographic poster is also available separately. It summarises some of the key findings of the research with insights and tips on how to make the most of time spent outdoors. The statistics come directly from their large­ scale research project carried out with support from NAPA and other care sector agencies.

Purchase the infographic poster here

The Research

“We amassed a lot of data during our large-scale research project back in 2013. With NAPA’s valued support, we recruited 17 care settings across England and Wales. with the majority of residents living with dementia, into our study to find out the answer to a pressing question we had: 

Why aren’t care home gardens being used more actively?

“Our findings identified the central role that care culture played in influencing how well gardens were being used. We discovered that the more progressive the care culture was (i.e. person-­centred or relationship-centred) the higher were the levels of engagement with the garden, regardless of whether it was designed. We also found that fearful attitudes towards Health and Safety effectively ‘capped ‘ engagement levels with the garden. This slowly evolved into our now familiar Care Culture Map and Handbook. 

“What we hadn’t done until recently was to do a deeper analysis of the quantitative data (i.e. the numbers, quantities and amounts of activities and happenings in the study). 

“Ten findings from this analysis activity stood out as being simple and achievable alterations to day to day care practices that would make a huge difference in engaging residents actively and meaningfully with their gardens. We were mindful that our work with care settings is primarily about encouraging behaviour change and so we felt sharing these findings would be best done via a colourful infographic poster.

“The infographic style also enabled us to distil the information into a series of simple but clear statements that can encourage someone to pause and reflect on what they do. The poster format works well as it is something that people can gather around (just like our Care Culture Map) and it can be displayed publicly for all to see. 

“The poster can also help care settings compare their attitudes and practices towards the outdoors with other settings. For example, the average length of time spent outdoors per visit from our study was 41 minutes. In some cases, and in good weather, this was well over an hour. 

“Even in the rain, almost 4 in 10 residents in our study spent time outside, if they wished. So the poster is also a subtle means to interrupt deeply held beliefs and attitudes about going outside and is a useful tool to aid reappraisal of an important and often neglected part of the overall care environment at the care setting. And for those homes that actively engage with the outdoors with their residents, the poster is a great way to display to everyone the positive value that is already placed on this important and health-enhancing space. 

“We hope that the poster will be displayed prominently on notice boards so that residents, families, staff and managers can feel inspired by these tips and insights to enable fresh ideas about stepping outside or extending a visit to the garden. Above all, the poster articulates how simple changes to habits and routines, like taking a meal outside, or placing a bench along a path, can all help to create meaningful time spent outdoors for everyone at the care setting. 

For more information about the work of Step Change Design please email Mark or Debbie at info@stepchange-design.co.uk

This article on the creation of the infographic was originally published in NAPA Living Life Magazine Autumn 2019.

Free to print out and share: our Garden Wordsearch

 

 

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.

 

Two award-winning products… one fabulous offer

TNV Reminiscence 1950s

We are delighted to be partnering with Many Happy Returns to create the Twist-N-View Happy Memories Set for care homes and hospitals. We have adapted our Twist-N-View Display Care Chart so as to display and store a number of the award-winning Chatterbox Cards, and are now offering 6 Care Charts and a pack of 26 Chatterbox cards for just £77.60.

Not only does the Twist-N-View Happy Memories Set facilitate person-centred care by ensuring all those interacting with an individual are aware of their needs and preferences, but also provides the tools to encourage conversations and facilitate reminiscence sessions.

See more by clicking here..

 

Mycarematters Display Options Now Available

Mycarematters Tablet and Chart

There’s now an alternative way to collect and share a person’s needs and preferences, using a simple online tool. Mycarematters has primarily been designed to ensure that a person’s needs and preferences are available without delay in the event they are admitted to hospital.

But the information needn’t languish unseen until that point. It can be used in a person’s home or in a care home to help paid carers develop a relationship with the person they are caring for. A person’s Mycarematters record can be viewed on a tablet or printed out and displayed in a number of ways to suit different environments.

We offer a selection of display options: click here to see the current range, or contact us by phone on 01403 210485 or by email so we can offer some suggestions on the best way to use Mycarematters in order to meet your needs.

The Mental Capacity Act explained

Mental Capacity Act Guide

We were delighted to be invited by SITRA to collaborate, together with Carers Trust, on a new Guide to the Mental Capacity Act, funded by the Department of Health.

It has been specifically designed to support carers of people with dementia and was shaped by input from individual carers, carers groups, professionals and specialist support groups.

The Guide contains advice and support for carers in supporting those they are caring for to make decisions, or when they have to make decisions on their behalf, and gives useful information on when and how to get support and when to involve other people as well as on ‘best interest’ decisions and Lasting Power of Attorney.

It also contains a diary section to record key decisions or events.

“Wonderfully laid out for harassed carers to quickly navigate through.” Family carer

“I have found it such a useful tool to give to care workers as part of their MCA training.” Healthcare trainer

Click here to download a copy of the Guide.

Should you wish to place a bulk order please email enquiries@carechartsuk.co.uk .or call 01403 210485.

Introducing Mycarematters…

Mycarematters

It’s already been an exciting year for Care Charts UK, seeing the adoption of our Remember-I’m-Me Care Charts by hundreds more care homes and hospitals, and receiving lots of positive feedback about the beneficial impact achieved by these simple, cost-effective tools.

We’ve also made a start on a range of products to help with the care of people living in their own home (we’re still looking for input on this from carers, both paid and unpaid, and those being cared for: please complete our homecare survey if you haven’t already done so.)

But there’s more to be done. I’ve been conscious for a while, now that we are working with increasing numbers of hospitals, of the difficulties faced by staff in collecting the information to go on a Care Chart. A number of hours, even days, might pass before nursing staff can build up a picture of the issues that matter to a person if they are unable to communicate these things for themselves. Even in that short time a person living with dementia might suffer trauma and discomfort purely because the information isn’t reliably available which would enable staff to allay concerns, meet a person’s dietary needs or understand what might look like inexplicable behaviour.

There is increased understanding of the value in treating the whole person to improve overall outcomes, and the power of Care Charts lies in providing quick, easy and reliable access to a person’s needs and preferences to assist in that aim. However, research suggests that nursing staff spend an average of 100 minutes per patient trying to collect the information that will help them provide that person-centred care.mycaredata note

So a few months ago I had one of those exciting lightbulb moments, with an idea that just seems so obvious I can’t believe it’s not already out there (not unlike my experience when I developed the first Care Chart for my husband Geoff). If we could provide a secure place online for people to upload their non-medical information, it could be made immediately available to all healthcare staff, cutting that 100 minutes by more than 90% and immediately improving the potential for better outcomes for both staff and patients.

In that moment Mycarematters was born, and in true ‘JFDI’ style (so often referred to by my friend Gill Phillips of @WhoseShoes’ fame), we’re about to start building the platform.

I want to reiterate the point that this is not about medical notes; there are others working on ambitious projects to digitise those, and they face many challenges. Mycaredata will focus instead on details like preferred foods and drinks, what assistance is required for a person’s mobility, why a particular routine is important and any other issues that matter to a person: reassurance for example that their pet is being cared for whilst they are in hospital, or that they need assistance to eat.

Uploading the information will be simple and straightforward, guided by a series of prompts, and it will be a quick and easy process for hospital staff to access it. We’ll be making use of the best encryption and data security software to protect the data (talktalk IT staff need not apply!) and the best news is that we’re going to try and keep it free for both individuals and hospitals.

If you would like to follow our progress you can do so at www.mycarematters.org and/or comment on any aspect of the project at info@mycarematters.org. I’m sure the end product will be quite different to what I was envisaging when I scribbled that first note to myself, but the aspiration won’t change: to improve the experience of a hospital visit for those people who struggle to communicate their needs, thereby improving their outcomes as well as those of the staff and of the NHS.

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