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

 

 

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.


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

 

 

Should a care home choose Mycarematters Care Charts or Profiles?

Care Charts v Mycarematters

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

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

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

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

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

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

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

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

Please Tell Me… a new Life Story book

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

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

 

Care Homes can now join John’s Campaign

Why should care homes join John’s Campaign?

by Julia Jones, co-founder of John’s Campaign

It’s a perfectly reasonable question – John’s Campaign started as a campaign for carer access to people with dementia in the acute hospital sector. My friend Nicci Gerrard’s father, Dr John Gerrard, had been living well with Alzheimer’s for almost ten years when he was admitted to hospital to have treatment for his leg ulcers. It was a hospital with old-fashioned restricted visiting hours, which were further curtailed by a noro-virus outbreak elsewhere in the hospital and a knee-jerk “no visitors” restriction.  He went in, “strong, mobile, smiling, able to tell stories about his past, to work in his garden and help with things round the house”. No one realised how his family support had helped him maintain these abilities. So no-one challenged the visiting restriction. No-one in the hospital though it odd that Dr Gerrard was simply lying in bed, passive, bewildered, almost certainly in a dangerous state of hypo-delirium because no-one in the hospital knew that he wasn’t always like that. They didn’t realise he could have been enjoying poetry or a game of chess. There were no rehabilitation beds available so they decided to keep him in hospital for longer.

Five weeks later Nicci and her family got their father home: “skeletal, incontinent, immobile, incoherent.”  He barely knew those around him and required 24 hour care for the rest of his life.  “Would we have left one of our children un-visited in hospital for 5 weeks?” Nicci and I asked one another. And so, after Dr Gerrard’s death in November 2014, John’s Campaign was born, insisting that the family carers of people with dementia should be welcome in hospital at any time.  Not just allowed but welcomed, 24/7 if necessary. Family carers (whether or not they are actually “family”) have a wealth of knowledge to share on behalf of the person who is no longer able to communicate reliably for him or herself. They are an essential part of that person’s team.

Superficially the situation in residential care feels quite different. Very often someone is moving into a home because they can no longer manage in the community, even with the help of their family. Family may be exhausted, despairing, guilt-wracked. Perhaps it seems kind to wave them away “Don’t worry, we’ll take it from here. You go home and take a break. We’ll let you know how s/he gets on.”

Alternatively you could think that families and friends are needed more than ever – but they are needed differently. They are needed to share information about the new resident, they are needed to maintain his or her sense of self-worth, to reassure them that they are still loved, they have not been abandoned. They are needed to bring “familiarity” to these strange surroundings. And, ideally, the shared responsibility with the care home can offer family members a chance to rediscover quality in a relationship that may have been damaged by illness, stress and tiredness.

I can imagine a care home manager sighing with exasperation at this point. “All this is true but we can’t MAKE the families come. There’s nothing stopping them but they just don’t bother!”

That’s a very good reason to join John’s Campaign.  Be part of a national movement,  put a certificate in the hall, write a letter to your families, and tell them that you’ve done this thing because they matter, you need them, their relative needs them, they need to stay part of the team. Families are the “third force” in residential care.

You can only join John’s Campaign if you know you welcome families at any time (with all sensible security arrangements, obviously). Then pledge your welcome in 50 words or less either by using the John’s Campaign pledge page or by emailing julia-jones@talk21.com .  You’ll be added to the Observer newspaper national list and to the interactive map on our website www.johnscampaign.org.uk