Self-Care Apps and Resources

Self-Care Resources

The lovely people at Dorset Mind have put together a wealth of self-care resources to support people to feel confident in managing their own mental health and well-being.

From inspirational talks, books and feel-good media to self-care guides, coping strategies and the latest Apps to help monitor moods and boost daily wellbeing.

Here’s our guide to three of the many self-care Apps that Dorset Mind have recommended:

The First free App we tested is called MoodTools, (2014).

 

 

 

 

 

 

 

 

This App includes a test for depression, a thought diary, activity suggestions and links to guided meditation videos, soothing sounds and inspiring Ted Talks on mindfulness, vulnerability and depression.

We particularly enjoyed the soothing sounds of forests, waterfalls, waves, classical music, gentle rain and white noise. (the App links to Youtube).

 

 

 

 

 

 

 

 

 

The mission of the App is to ‘package evidence-based therapeutic strategies and information in an accessible design’. Certainly it is simple to use and helpfully defines the different types of depression, the symptoms, the causes and explains the various treatment options including psychotherapy and anti-depressants.

The focus is on understanding depression and planning coping mechanisms including a ‘safety plan’ to support people when they’re feeling most vulnerable. The resources are mainly online but they are well chosen with something for everyone.

 

The second App we trialled is WellMind, developed in partnership with Dudley & Walsall Mental Health NHS.

 

The WellMind App (MHApp) has been designed to provide advice and signposting when you’re feeling anxious or stressed with practical ways to help you manage and understand your feelings so you can regain a sense of control.

The App asks you to record your mood including something you’re looking forward to, something you feel grateful for and something you’ve achieved that day. These responses can be added to a saved calendar so you can see patterns emerge and remind yourself of past efforts on darker days.

We particularly liked the guided breathing and muscle relaxation techniques to help you to stay calm during anxious moments – deep breathing is a skill that Julia Powell strongly advocates in her ‘Take Care of the Carer’ article out this month. (See below).

The App explains the effects of anxiety, stress and depression on different parts of the body so we can understand why our bodies may be responding in a certain way. Overall, it’s a simple but informative App with effective signposting to support networks and emergency contact numbers when self-management of anxiety levels becomes too difficult.

(The App also includes a very basic version of the snake feeding game which is intended to relax the player but is unlikely to hold anyone’s attention for very long!)

 

The third free App we tested was My Possible Self: The Mental Health App

 

 

 

 

 

 

 

 

 

This App began life as a series of emotional health and wellbeing services founded by Joanne Wilkinson whose own life was transformed by the support of experienced clinicians. With the help of her two daughters, and in partnership with the Priory Healthcare Group, the App was developed as a way of putting affordable mental health tools, clinical guidance and support into everyone’s hands.

My Possible Self encourages you to take control of your thoughts and feelings through guided modules and mindfulness exercises. These include; reframing your negative thoughts, being kinder to yourself, checking in on your whole body and concentrating on your breathing. The App allows you to record your experiences and symptoms and helps you to understand your moods, and the activities, people and places that influence it.

This is a much more sophisticated App than the previous two, it has animated graphics and a library of podcasts, exercises and toolkits including a food and drink log, physical activity log and mood tracker. It also offers positive affirmations, motivational graphics and a wide variety of articles and videos with the option to receive messages by email to encourage further engagement and regular mood monitoring.

We found this a comprehensive and accessible App, well worth installing. You need to create an account, but this is easy to do and requires no personal information.  There are plenty of features to explore and self-care techniques to learn to ensure you feel more in control of your emotional health and wellbeing.

All of these Apps, and many more, offer a range of self-care strategies and mood boosters to prevent you feeling isolated, powerless and emotionally trapped. Sometimes, simply taking a pro-active step to explore the support and advice available, helps us regain control, shifts our perspective and enables us to positively connect with the world again.

Hope you enjoy trying some of these Apps for yourself, do check out the other self-care resources that Dorset Mind recommend including the NHS ‘Every Mind Matters‘ plan, we couldn’t agree more. Good luck!

Anna C. Park

Please Note: We cannot take any responsibility for the downloading of these apps onto your mobile phones or devices but would love to hear how you get on and whether you find any of them helpful. Please send us a message here.

 

 

 

Interior Design in Care Homes by Jacqui Smith

Jacqui Smith is an experienced healthcare designer, running HomeSmiths with her husband, David.  She is an SBID Accredited Designer and Chair of her local Dementia Friendly Community.  Having permanently lost the sight in her left eye in 2012, Jacqui has personal experience of visual impairments and the role the built environment plays in supporting people with sensory loss.

Jacqui highlights the key elements of interior design to consider when planning and designing spaces for older people in care:

Interior Design in Care Homes – Where to Start?

The built environment plays a key role in the health and well-being of residents, affecting both their physical and mental health.  Good design can make the world of difference to how a resident, carer or relative will feel in a space. 

Like all design, function is the most important consideration.  A room might look beautiful but unless it serves the needs of the people spending time in it, and the furnishings and finishes have been chosen with practicality in mind, it will not “work”.  As we age, our senses deteriorate, and some people will experience cognitive impairment so the design must support these needs and enable residents to live as independently as possible for as long as possible.

I am a firm believer that care homes should be warm and homely, environments which residents can relate to and settle in quickly.  Whilst yes, the designs should have impact and an element of aspiration, I do not subscribe to the idea that care homes should emulate the 5-star hotel aesthetic.

 

Light

My starting point would be to maximise natural light wherever possible.  Window treatments should be dressed back from the window and at the same time allow strong daylight to be filtered when necessary, to avoid glare.  Well thought through artificial lighting is a worthwhile investment.  The wrong type of light can have an enormous impact on a scheme and greatly affect the colour rendering of furnishings and wall colours, and also how people feel in a space.  I see many care homes fitted with LED lights on the correct assumption that after the initial outlay, maintenance would be minimal, yet the fitting is a cool blue light LED which renders any furniture or finishes with warm red tones a far from uplifting muddy brown.  Light fittings should be diffused to avoid glare and flexible task lighting is a worthwhile addition to a scheme enabling residents to adjust light levels to suit their individual needs.

Lighting can also affect our body clock.  Different colours of light have varied wavelengths which the human body responds to in different ways.  The cool blue light of the morning kick starts our body clock; the presence of sunlight stimulates the brain to secrete cortisol which promotes a state of alertness, preparing us for the day.  As the light changes through the day and then fades to the warm yellow of dusk, we receive the cue to start thinking about winding down and ultimately falling asleep.  The science behind this cue is the hormone melatonin which the brain releases towards the end of the day, which causes us to feel drowsy.  White and blue based lights will inhibit the secretion of melatonin which will consequently interrupt our body clock, upsetting our usual sleep pattern.  So, a cool blue light in a care home dining room at the end of the day is not conducive to a relaxed and restful evening for residents.  Difficulties regulating the body clock are common in old age and particularly significant for people with dementia, so getting the lighting right is essential.

 

Colour Contrast

If I had to pick one thing which can make a huge difference in supporting independence in living environments for older people, it would be colour contrast.  Contrast between objects helps residents make sense of their environment and whilst it’s vital to apply this principle for people living with dementia, it also plays an important role in supporting those with age related sight issues.  Ensuring that there is visual contrast between critical surfaces will help a person with poor sight, be it through dementia or old age, navigate their environment as easily as possible.  Skirting painted to contrast with the floor will outline very clearly where the floor ends, and the wall begins.  Architrave painted to contrast with the wall will define where the door is.  For two surfaces to offer enough contrast they must have a 30-point difference in their LRV, Light Reflectance Value which is a measure of the amount of light which a surface reflects back into a room where the lighter the colour, the higher the index.  The same logic applies to light switches and fixings like grab rails in bathrooms.

Flooring

Whilst colour contrast can help define a room, contrast in adjacent flooring surfaces should be minimal.  A dark threshold strip or a dark floor mat against a paler toned floor can appear like a step to a person with dementia and might present a trip hazard.  Similarly, dark door mats can, to some people, look like a hole.  Ideally the flooring throughout the home should be the same colour regardless of the surface.

So, colour contrast comes into consideration in choice of surfaces, but the finish of those surfaces is also important.  Hard flooring must be anti-slip especially in wet areas such as bathrooms where an even higher anti-slip level is required.  It’s also important to select finishes that do not cause glare so better to avoid polished surfaces, choosing matt and brushed finishes instead.

 

Acoustics

Poor hearing is something that affects many older people and can in some cases lead to isolation and increase the speed of cognitive decline.  Interiors should be designed with acoustics in mind, maximising sound but minimising noise.  Think about position of kitchens and lifts in relation to resident areas and consider finishes choices such as acoustic flooring, noise absorbing window treatments and furniture such as room dividers which can help.

Decor and Furnishings

Furniture and décor should be relatable, and the layout of the room should encourage social interaction with clusters of seating, ideally with varying seat heights so that residents can select a chair which most meets their comfort needs.  Corridor seating is important, providing residents with resting places as they move from one part of the home to the other, encouraging them to be independent and sociable.

Colour itself plays an important role in designing for health and well-being.  The correct choice of colour can make an enormous difference to how a person experiences being in a certain room, affecting how they feel, behave and interact with others.

 

 

Art and accessories are often seen as a ‘nice’ to have but I do think they are an important part of a home; not only do they make it more domestic in feel, they can also be used to help residents remember where they are, as many people will navigate by objects rather than words or colour.  Which brings me on to wayfinding which should be enough to aid navigation but not ‘overkill’.  Wording on signs should be clear with an easy to read choice of font and good contrast; light text on a darker background is preferable because it’s easier for the ageing eye to see than dark on light.

By Jacqui Smith

Homesmiths Interior Design Services

 

 

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.

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

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.

Supported by

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Founder awarded grant for product development

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We were delighted to hear that our founder Zoe Harris has been selected as one of 29 social entrepreneurs to receive funding from UnLtd as part of the The Coutts Foundation Solutions for an Ageing Society programme.

The competition was fierce, with the final group selected from over 250 applicants, and what clinched it for Zoe was the simplicity of her solutions, and her clear vision of what she could achieve with the grant on offer.

“The judges immediately ‘got’ the charts, and liked the fact that we have evidence to demonstrate they really do make a difference in a wide range of caring environments,” explained Zoe. “They also understood the need to address the communication issues people face when being cared for in their own homes.”

“The Fast Growth Awards are our opportunity to recognise people with brilliant solutions to the social problems we face as a nation,” said Cliff Prior, CEO at UnLtd. “Together with our partners, we help them scale nationally and internationally for greater social impact. We’re excited to see such a diverse group of entrepreneurs this year, tackling problems in a huge variety of sectors, and we look forward to supporting them as they scale over the coming year.”

This funding allows Care Charts UK to get cracking on a five part project to bring a range of home care communication tools to market. First stage is a questionnaire, where we want to collect the opinions and thoughts of carers who have been or are caring for someone in their own home (whether paid or unpaid), as well as from those who have been or are being cared for. Second stage will be a focus group brainstorming the ideas collected. Third stage will be developing prototypes to trial, fourth will be to conduct trials and adapt designs as required, and the fifth stage will be to make the range available nationwide.

This is a link to the questionnaire, which we would very much like all carers, both paid and unpaid, and those being cared for, to complete: https://www.surveymonkey.com/r/CCUKhomecare.

Kate Granger’s two books should be required reading…

The Other Side Kate GrangerMost 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 full of technical terms and medical-speak, making it quite clear as to 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 provided 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.The Bright Side Kate Granger

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.

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Good Care Week 2014

 goodcareweeklogo

Good Care Week 28 April 2014

 

Care Talk magazine are looking for stories from Good Care Week 2014.

Good Care Week aims to champion excellence in social care by;

Providing a platform and equipping people who work in social care, or are in receipt of services, to act as a focal point for raising the profile of the sector locally.

  • Encouraging individuals and organisation from the social care workforce, service users and families signing up to the campaign and become Good Care Champions, promoting excellence in the sector.
  • Galvanising support locally via regional media.
  • Raising the status of social care to a professional career

What can I do for Good Care Week?

Be a part of this groundbreaking initiative to raise awareness of social care and ensure that this sector gets the respect and appreciation it merits.

  • Get your colleagues involved; care workers, managers and providers. What could you do collectively to raise the profile of social care in your local community? Open days, encouraging volunteers and visits from local schoolchildren are just some simple yet effective initiatives.
  • Get your service users and their families involved. Ask them to support the campaign by providing testimonials about their care provision.
  • Register to become a Good Care Champion and equip yourself to promote excellence in social care locally. By becoming a Good Care Champion you will also be signing up to our pledge to challenge negativity towards our sector.
  • Write to your local MP about Good Care Week. Ask them to help you raise the status of social care in your community and formally support the campaign.
  • Share your ideas with us for raising the profile of social care locally so that colleagues throughout the sector can emulate this in their own communities. We will feature your examples, stories, comments and suggestions on the Good Care Week website and in Care Talk magazine.

About Good Care Week

Building on the success of the pilot campaign in 2013, key figures from around the sector will come together to launch the new look Good Care Week at the National Children and Adult Services Conference, Harrogate International Centre, 16 October 2013. The aim – to change the dynamics of social care to include the whole British public.

Last year saw the first ever Good Care Week which was launched at the House of Commons and initiated a nationally recognised annual awareness campaign to take place in April of each year.  Good Care Week 2013 saw local initiatives come together to create a national movement, celebrating and promoting excellence in social care, raising the profile of social care professionals, challenging negative stereotypes and championing the many thousands of heroes who provide good care across the UK every day. The campaign received wide coverage, including The Guardian’s Social Care Network, Vanessa Feltz BBC radio show and local media exposure.

Please send your good news stories for publication in Care Talk or on the Good Care Week web site to editorial@caretalk.co.uk

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