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.

 

 

 

Taking Care of the Carer

This post originally appeared in ‘Julia’s dementia blog‘ in October 2017. We are really grateful to Julia for sharing her personal story with us and hope that it will help other carers in the same situation.

Take Care of Yourself First

Whether you care for a relative with dementia at home, visit them in a care home, or are a professional carer you need to be mindful of the potential toll on your own physical and mental health. It’s helpful advice that I dismissed. I suggest you don’t make the same mistake.

Carers taking care of ourselves

 

 

 

 

 

When I started caring for my mother, I was touched by kind messages from people I hardly knew telling me to take care of myself. I struggled to understand why there was so much emphasis on the carer. After all, it wasn’t me who was desperately anxious, confused and vulnerable as my mother was. And I already looked after myself.

Above all, I wasn’t the primary carer (at that time); my mum lived in a care home. I didn’t face that burden. I just visited my mum. I was almost embarrassed at the idea I might be at risk….

Three serious infections in two years

…And yet, perhaps it was no coincidence that since my mum’s problems started, I had three serious infections, two of which triggered sepsis, and resulted in hospital admissions. Normally, fit and healthy, my first infection was within a couple of weeks of my mother being admitted to hospital. For me a urinary infection, quickly moved to my kidney, and affected my liver. I was cared for in the same hospital at the same time as my mother, though she was in a locked ward.

My last infection was severe pneumonia which led to pleurisy, and infections of my gall bladder and liver. I remained in hospital for 10 days, until I could breathe enough oxygen into my lungs unaided. I think the trigger for my illnesses was the huge emotional turmoil of caring for someone you love, someone who is so deeply distressed.

Feeling emotional and down

One weekend, I found myself feeling flat and weary during a visit with mum. I hadn’t intended to spend five hours with her that day, but I didn’t like to leave as she seemed particularly needy and helpless. That evening I had planned to restart a fitness class which I had neglected. I was looking forward to it, but while I was with mum, I started feeling physically tired and a little unwell. I talked myself out of the class, although it was probably the tonic I needed.

This ‘down’ feeling came from nowhere and sometimes took hold of my mood for several days at a time. It’s not unusual. Everybody feels blue from time to time. The problem was that someone I loved was living in a nightmare.

The cognitive impairment caused by the disease made it hard for mum to make sense of everyday things, her insecurities were amplified, her self-esteem assaulted, and she often ended up feeling scared and vulnerable. On top of that she was in a strange place, that because of dementia, never became familiar. As she often said to me “I am scared out of my pants”.

Physical and mental health toll

Caring for someone with dementia can have impacts you wouldn’t expect. “Carers of people with dementia have increased risk of developing dementia,” according to dementia care expert, Teepa Snow.

“Compared to non-caregivers, carers for people with dementia visited their GPs 50% more and took up to 86% more prescribed medications,” according to Alzheimer Scotland.

Family caregivers of people with dementia are “often called the invisible second patients”, according to an article in Dialogues, a clinical neuroscience magazine. “The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship.”

literature review on the topic  concluded, “It appears that the majority of dementia caregivers are sufficiently disturbed to be of concern to the mental health professions.”

Reaction to emotional distress

Without the responsibility of managing mum’s daily needs, I didn’t face the 24-hour physical and practical job that some families do. The major impact for me was at an emotional level. I felt guilt and sadness. I was haunted by the thought she would be better off in her own home if only I was willing to support her. My sadness about her ongoing distress was at a deep and visceral level.

I was initially reluctant to connect my illnesses, with the situation my mother was in. Having subsequently learnt about the clear connection between mind and body, I think there is no getting around it. It is likely that my own emotions increased my susceptibility to illness.

So, although I already took good care of myself and my caring role at that time was minimal, I became more conscious of symptoms and moods, and more dedicated to preserving my physical and mental health. I learned to seek medical advice early if in any doubt at all. My persistence in getting medical attention during my third infection may well have saved my life. Not trusting my second diagnosis, I admitted myself to A&E where I was soon diagnosed with double pneumonia which quickly led to sepsis. In the UK, over a fifth of the 250,000 people who are affected by sepsis every year, die from the condition.

Take care of yourself

If your primary concern is your loved one, don’t forget you won’t be much use to them if you become ill. Teepa Snow, suggests you won’t be good company either, “If you’re in survival mode, you are not the kind of person that someone with dementia wants to be around!”

Even if you don’t think you are susceptible to physical or mental health strains it makes sense to be proactive. Alzheimer Scotland has put together a very useful guide for carers called ‘Looking After Yourself’ (PDF). I include the top tips here, though the whole document is well worth a read:

  • Exercise: Keep up or take up exercise and outdoor walking, as far as possible. It helps you to stay healthy and relieve daily stress. You may even be able to do some activities with the person who has dementia. Exercise is also very good for people with dementia, as I highlight in this post about tackling anxiety and depression.
  • Sleep: Regular sleep and rest are essential. If you don’t get enough rest it can lead to depression and affect your health. A leading neuroscientist recently highlighted a link between poor sleep and increased risk of developing dementia.
  • Health: Watch out for signs of your own physical or mental distress. Keep an eye out for symptoms that may seem benign at first. Don’t be afraid to get them checked out with the doctor. If you find you’re not sleeping, or constantly feeling down go to your doctor.
  • Relax: Try to take time out to do the things that you find relaxing such as getting a massage, doing yoga, or listening to calm music.

Breathe

Teepa Snow has advice about how to manage those stressful moments when you are with the person you care about, in the first of a great series of short videos for carers.  Take “three deep cleansing breaths” when you find yourself becoming fraught or distraught. This is important to address our physiological reactions to pressure. When we start feeling stressed our bodies tense up and our breath becomes shallow. We breathe in, but not out, as we go into survival mode. This stops us getting enough oxygen into our brain, which affects the emotional control centre and the front part of the brain that helps us to make good decisions. This short little exercise that you can do again and again, helps you to take care of yourself, and enables you to take better care of your loved one. Watch the video. When my mother was feeling anxious, I led her through a version of this exercise too.

Julia Powell now runs mindfulness courses and coaching for carers and people living with dementia. Contact her at julia@juliapowell.co.uk to be added to her mailing list for upcoming courses.

 

Feasts to Remember by Sally Knocker

Tomatoes on Toast and other Feasts to Remember

Food and Memory

One of my favourite meals is sliced fresh tomatoes on toast with lots of ground black pepper.  This takes me right back to my grandmother’s kitchen in a small cottage in West Sussex in England, where I spent many happy visits in my childhood.  I can see her preparing the tomatoes and remember sitting with her at the table where we would sometimes do a crossword puzzle or play a game of patience together.  She also made the best scrambled eggs and frothy, sweet, milky coffee.

Favourite foods are so often reminiscent of particular people and events in our lives.  The rituals associated with family meals can also be important whether it is an everyday meal or a particular celebration.  Food is much more than something which we need to survive physically.  It also feeds our sense of identity and belonging.

Menus for a Lifetime

When supporting older people, there is increasing talk of creating music collections which link to people’s life stories, such as the ‘Playlists for Life’ initiative.  But have we ever considered a similar focus on food – perhaps ‘Menus for a lifetime’ which charts some of the recipes, food and drink enjoyed by people in their childhood, working lives and on holidays for example?   These could perhaps be recreated and talked about as part of valuing that person’s unique story.

Even more important perhaps is to note the food that people really dislike.  I have a particularly bad memory of eating very pungent Goat’s cheese in a restaurant in France as a child, and I have never been able to touch it since.  Some of the people we support will have similar negative associations with some food, but how will we always know and make sure that the Chef is aware of these?

Recognising Cultural Identity through Food

Food is also an important part of cultural identity and in some care homes, there have been great examples of where team members have brought in home-cooked recipes from the Philippines, Poland or India, for example, to share with people living and working in the home.  The great smells, tastes and conversations that result in this sensory experience can be a welcome change to the usual menu of the day!

Conversation Starters

Creating conversation starters around food in the lead up to a meal can be a great way to whet the appetite:

“What is your signature dish?”

“When you were a child, was there anything you refused to eat?”

“What drink would you order at the bar on a night out?”

“What is your comfort food?”

Bringing in Recipe Books and grocery store magasines with pictures of different foods can also get people talking about meals they enjoy.

Food Heaven or Food Hell Choices?

So, when thinking what might be important to you if you were to live in a care home or attend a day centre, how confident are you that others would know your ‘food heaven’ or ‘food hell’ choices?  How can we take time to find out more about these with the people we support, either by asking them directly or talking to their family and friends?  Will you maybe make my day by bringing me tomatoes on toast…?

By Sally Knocker, Meaningful Care Matters Consultant Trainer

Meaningful Care Matters provides a range of educational resources on the topic of food and mealtimes as part of creating a sense of home with their Butterfly Approach.

For more information about our work, please contact: Admin@meaningfulcarematters.com

 

 

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.

 

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

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

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

Access the full report here…