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

 

 

My Mum and Dignified Dining Solutions by Jo Bonser

In November of 2016, my sister and I were told our Mum wouldn’t survive Christmas.

These are the words no one ever wants to hear about their loved one, but my Mum’s GP warned us that Mum had given up on life and was ready to die.

There was no denying that Mum was really poorly, living at home with vascular dementia aged 95,  she had suffered 3 falls, several urinary and chest infections and had no appetite or interest in eating or drinking resulting in dramatic weight loss and dehydration. She would not pick up a knife or fork to eat and if you tried to assist her with a meal she would turn away from you.

However, my Mum was an incredibly strong, and stubborn, lady and we weren’t prepared to just accept what the care professionals said, so we set to work to do whatever we could to help her recover.

With my, then, 26 years experience from working in the care sector, and having some knowledge of nutrition and hydration for our elders,  I decided to take charge of Mum’s mealtimes and began to observe her mealtime behaviours to see what I could do to improve her dining experience and ultimately her nutrition levels.

I learned that getting people with dementia to eat can be challenging, and that complex interaction with the mealtime environment, plus many eating difficulties can prevent their nutritional intake.

Following research, I found an online mealtime assessment tool and started to observe Mum’s mealtime behaviours, to identify, find solutions and create a care plan to help overcome her mealtime eating difficulties with the goal of bringing enjoyment for her at mealtimes, giving her back her mealtime independence, preventing malnutrition and improving her quality of life.

The assessment tool provided me with a list of suggested interventions of which I chose several to trial with Mum including:

  • Decluttering the mealtime environment to reduce confusion levels.
  • Reducing noise levels resulting in a calmer setting which improved her nutrition
  • Introducing adapted crockery and cutlery to help her regain eating independence
  • Eating with her to make mealtimes more social occasions

Mum’s transformation was miraculous! Within weeks, Mum was back to eating completely independently, enjoying her meals and gaining weight.

The care professionals couldn’t believe her transformation and her end-of-life care nurse, Sally, stopped her visits saying ‘you don’t need my help anymore!’

Having seen Mum’s transformation, I wanted to share my learnings with others, who were caring for people with dementia, to enable them to also experience more positive and dignified mealtimes and improved nutrition.

And so Mum provided me with the inspiration to write my guide, as a free resource, with one aim – to help people with dementia achieve the most dignified, independent and delicious dining experience possible.

I had walked a mile in the shoes of those who care for people with dementia. I had faced their challenges, and I had been able to overcome them and I wanted to share the strategies which had worked for us.

I wanted to empower care managers and their teams and family members caring for people living with dementia to understand they CAN make a big difference in the way they support their people to lead to improved engagement and enjoyment at mealtimes.

I wanted them to really think about how their dining experience made their residents feel by putting themselves in their shoes.

Would their dining experience pass the ‘Mum’ test – would it be good enough for their loved ones? And if not why should it be good enough for anyone else?

My guide is designed for busy care managers and anyone who ‘s role involves supporting nutritional health. It is packed with best practice guidance and combines solutions to mealtime challenges, tips to improve the dementia mealtime experience and ideas of product solutions that are enabling for people with dementia.

My guide launched in 2017 and was requested and distributed to many different care professionals and types of organisations, more than I could have imagined: OT’s, care home managers, local authorities, care trainers, CQC inspectors, SALT teams, dieticians, care quality consultants, care catering specialists, end of life nurses and home care companies to name just some of the people who have had copies and have fed back what a valuable resource it has been.

Following feedback from a senior dietician within the BDA, who highly rated it and helped me to improve it, I updated it in 2018 and very much see it as an evolving resource as I learn more, and more research is done.

In 2018, I delivered ‘The Dementia Mealtime Challenge’, an interactive workshop I created based on my guide, at the National Association of Care Catering annual training and development forum. Several people who were present, have since come back to say ‘thank you we have implemented all the suggestions from your workshop!’

This is now available as a workshop for teams in care homes who are serious about looking at ways to improve their mealtime experience.

2019 saw me start my first consultancy project after an outstanding care provider approached me to work with them on a project to further improve their already excellent mealtime experience. This led to me developing a range of services to offer care homes including:

  • Mealtime observational audits
  • Enabling independence at mealtimes assessments for individuals
  • Creating enabling dining environment audits for people living with dementia
  • Mealtime equipment audit
  • Partnership working with care teams on improvement plans and implementation.
  • Retained support to measure continuous improvement.

I am passionate about helping people and sharing my knowledge,  and with my own experience and care sector background would love to work with more care homes to help them too.

 

I was thrilled to speak in the Dementia Theatre at the Care and Dementia show, and to launch our new video celebrating dining in care made in collaboration with Ian Donaghy; ‘Made with Love’.

by Jo Bonser

 

Download your own copy of my Dignified Dining Solution Guide using this link: https://hcsuk.co.uk/dignified-dining

You can visit Jo’s website here: www.hcsuk.co.uk.

 

 

 

 

 

 

 

 

 

 

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.


The Transformative Power of Art

Beach Huts

by Emma Harris

For the average person, being given the opportunity to create and express themselves might inspire a sense of freedom and productivity; it might also be something we take for granted. For a person struggling with dementia, perhaps with weakening senses or an inclination to recede into themselves, the power of art and creativity can be transformative to their quality of life.

Worldwide, people are beginning to understand the importance of creativity for those with dementia. In 2015, the Alzheimer’s Society produced a guide to encourage arts venues to become more dementia-friendly, offering extensive advice on how to do so. Sir Peter Bazalgette, Chair of Arts Council England, says “There are 850,000 people in the UK living with dementia and, for many of them, the arts will be fundamental to enabling them to live well with their condition”.

James, Creative Minds
James, founder of Creative Minds, leading an art session.

James Cropper is someone who has grabbed this idea by the horns. James was caring for an older adult with learning disabilities when he discovered the power of arts and crafts.

“He just came alive,” says James after observing this individual’s love to create.

Inspired by how stimulating and energising art could be, Creative Minds was soon formed. Now, James and his community of experienced artists enhance the lives of thousands of people in care homes, placing emphasis on experimentation and allowing them the time and materials to create their own pieces of art work. And the benefit is not just emotional; as well as boosting self-esteem, James explains how creativity increases cognitive stimulation, improves dexterity and motor skills, and reduces stress and anxiety. Family members of residents have been impressed with the art sessions and notice a profound impact on the residents. Jane, a resident’s daughter, comments, “I believe these sessions provide far more to the individual than just an afternoon of fun”.

Creative Minds continue to develop their art sessions and have started encouraging the interaction of multiple generations by inviting primary school children to join in with art sessions at care homes. They aim to make art accessible to people of all ages and abilities, bringing their sessions to more and more locations.

Engage & Create, founded by Rachel Mortimer, uses art in a slightly different way. Using an iPad to display famous pieces of art, they facilitate discussions of art in care homes and encourage conversation amongst people with dementia. Rachel says that it is fascinating how people with dementia notice things in art that she has not seen before. Like James, she has observed first-hand how interaction with art can draw people out from their shells and improve well-being, not just during the discussions, but well beyond them.

In 2007, The MoMA (Museum of Modern Art, New York) set up an initiative to make art more accessible to people with Alzheimer’s, expanding their education programmes to assist health and art professionals in making art accessible to them. Today, they continue to encourage people living with dementia interaction with art through programmes (see link below).  Whilst a trip to New York to participate in one of MoMA’s dementia programmes may be a little tricky, Engage & Create bring discussions directly to the care home.

And they don’t stop there; Rachel’s ‘Ignite Programme’ offers a tailored training package to care home staff so that they themselves can lead discussions about art work, supported along the way by the Engage & Create team. An occupational therapist told the team, “that was one of the best training sessions I’ve ever had … it’ll change the way I work with people with a diagnosis of dementia forever.”

If you want still more proof of the power of art, take a look at this recent study on dementia and creativity, ‘Dementia and Imagination’. The project was studying how visual arts can impact people with dementia. As the research only ended in December 2016, full findings are yet to be published but the initial reactions are undeniably positive. Participants commented on the soothing environment and the sense of achievement they felt; findings also indicated that family members and carers were affected positively as the art sessions allowed them to get to know the residents better through their creations.

All of these ventures focus on what people living with dementia can do rather than what they can’t do. In turn, the people living with the condition learn to focus on these things as well, nurturing an environment of positivity, colour and creativity which has the power to significantly improve their well-being.

If you are aware of an organisation that should be included in our list of resources, please email the details to info@mycarematters.org.

Resources:

Creative Minds Offer practical art sessions across England

Engage & Create Offer art discussion sessions and training packages for staff, including The Engage & Create Ignite Programme

Creative Buddy is a social enterprise that provides mobile arts and crafts sessions for care/residential homes, day centres and community venues in Sussex.

Dementia and Imagination A recently completed scientific study on the benefit of art for individuals with dementia

Arts4Dementia  develops arts programmes to empower, re-energise and inspire people with early-stage dementia and carers through challenging artistic stimulation, to help them live better for longer in their own homes.

Equal Arts Offer training sessions for care staff and run projects encouraging creativity amongst people living with dementia

MoMA Information on how to make art accessible to people with dementia.

Alzheimer’s Society Dementia Friendly Arts report A guide for arts venues on how to become dementia-friendly

 

 

 

 

Pets as Therapy

The idea that pets can play a therapeutic role is not new: the charity Pets as Therapy was founded over 30 years ago and 4,500 dogs and 108 cats now visit over 130,000 people every week. That’s a staggering half million bedside pet visits each year, giving both young and old the pleasure and chance to cuddle and talk to them. What is more recent, however, is researchers’ attempts to understand why this can have such a positive impact on people’s health and wellbeing.

“Pets hold a special place in many people’s hearts and lives, and there is compelling evidence from clinical and laboratory studies that interacting with pets can be beneficial to the physical, social and emotional wellbeing of humans,” says Lori Palley, DVM, of the MGH Center for Comparative Medicine. “Several previous studies have found that levels of neurohormones like oxytocin – which is involved in pair-bonding and maternal attachment – rise after interaction with pets, and new brain imaging technologies are helping us begin to understand the neurobiological basis of the relationship, which is exciting.” More details of Lori’s research and report can be accessed here.

The Alzheimer’s Society touched on this in their Living with Dementia magazine back in 2011, quoting Jane Fossey, a clinical psychologist and a trustee of the Society for Companion Animal Studies (SCAS), which promotes the health and social benefits of human-animal interactions. “A number of small-scale studies suggest that introducing animals into care homes can have positive effects for people with dementia. For example, spending time with visiting animals has been shown to reduce blood pressure and anxiety, and improve social interaction and sleeping patterns. It can also reduce the late-afternoon restlessness that can affect people with dementia.”

No wonder then, that no less than 7,721 care homes in the UK declare themselves to be pet friendly (see the full list on the carehome website) with some organisations placing animals centre stage in their daily life. In Eden Alternative nursing homes, for example, dogs, cats and birds live among and interact with the residents, “lessening their sense of loneliness and boredom”.

Meet Nala the Teacup Poodle, lifting the spirits of residents at a care home in Minnesota.

The Spark of Life approach, which has been adopted by a number of care homes in USA, Scandinavia, Australia and Europe, claim that “the interaction that occurs with an animal companion diffuses loneliness and gives the person with dementia a reason to live and get up in the morning. Caring for a pet automatically enables the person with dementia to be needed and useful, gives them the opportunity to care, they have someone to love and who loves them back unconditionally, and their self-esteem is boosted as a proud pet owner.”

So pets can play a valuable role in care homes, either in the form of a visiting therapy or as permanent residents. But Dementia Dog are extending the role of ‘a man’s best friend’ further still. Every year, 25% of the puppies bred to be a guide dog for the blind fail to pass the rigorous tests, but there now may be an alternative role for them. Dementia Dog aims to pair people in the early phases of dementia who live with a full time carer with a dog trained specifically to assist them in their day to day lives.

The dogs provide at least three assistive tasks to their partner, such as support for daily living routines (waking, eating, getting exercise and going to the toilet), reminders (such as prompts to take medicine, drink fluids and other user identified regular tasks), or soft support issues (such as companionship and acting as an icebreaker in social situations).

Then there are projects that harness the benefits of other animals, such as HenPower, a heart-warming project which caught the attention of the media recently. A 12-month study of the project by Northumbria University found HenPower is: improving the health and wellbeing of older people, reducing depression and loneliness in older people and reducing the need for antipsychotic medication. Pippa Kelly’s excellent blog on HenPower provides more detail.

Ann Napoletan’s experience sums it up beautifully, so she should have the last word: “Anyone who owns a dog or cat can attest to the beauty of their unconditional love, and animals often forge a special connection with Alzheimer’s and dementia patients. My mom had a cat for a number of years, and their bond was inexplicable.  Holly wore a perpetually annoyed expression on her feline face and loathed most humans, yet she never left my mom’s side; as much as she detested being picked up, that darn cat would even let Mom carry her around like a rag doll. It never failed to amaze me. Somehow Holly knew that her special person needed a special kind of love.”

Photo by Joel J. Martínez on Unsplash

Further contacts:

Therapaws, North and West London. “Therapaws is a visiting animal therapy programme delivered by The Mayhew Animal Home. We recognise the benefits of taking animals into the care setting to engage with older people, encouraging social interaction to promote emotional and physical wellbeing. We specialise in visits to people with dementia and to palliative care centres. Our volunteers and their dogs go on regular visits to care homes, day centres, hospices and hospitals across North and West London.”

Owls About Town, Selsey West Sussex. “Our ‘Wise Owl’ experience is delivered by the calmest and most tolerant of Owls. We have found these sessions to be particularly beneficial to older people and those suffering with memory issues, such as Dementia. These experiences are very touching at times, seeing the joy on peoples faces when they interact with such majestic creatures.”

Wings of Freedom visit care homes and offer a very personal experience for everyone, giving a real life skill view of all things Owls and Birds of prey. For those people who may not wish to join in or get to the group, they do walkabouts to rooms.

For trips out, what better way of getting back to nature and into the fresh air than visiting your local Care Farm? Care Farming UK have a list of suitable venues near you, and award-winning journalist Pippa Kelly has written in interesting article on the subject of care farms and dementia.

The Donkey Sanctuary “Our team of specially trained donkeys offer an outreach service visiting hospices and local residential homes including those dealing with dementia care. The donkeys prove to be a great stimulation and provide valuable assisted therapy to residents… The donkeys also love the warmth and affection from vulnerable residents so the animal assisted therapy goes both ways!” You will find Donkey Sanctuaries in Sidmouth, Belfast, Birmingham, Derbyshire, Ivybridge, Leeds and Manchester.

The power of music

Updated January 2020.

Why does music have so much power? In a fascinating article the physician, neurologist and author Oliver Sacks, suggested this is a question that goes to the heart of being human. We turn to music, he said, because we need it, because of its ability to move us, to induce feelings and moods, states of mind.

We may still not know why, but those who work with people with autism or frontal lobe syndromes, and particularly with people with dementia, have recognised the power that music has to generate an emotional response, familiar music perhaps evoking memories of earlier events in people’s lives that cannot be reached any other way.

Research undertaken by the University of Iowa confirms the relevance of this for people living with dementia. UI researchers showed individuals with Alzheimer’s disease clips of sad and happy movies. Five minutes later, most were unable to recall any factual information about the films, and one person didn’t even remember watching any movies. Yet these people experienced sustained states of sadness and happiness.

The researchers concluded: “The fact that forgotten events can continue to exert a profound influence on a patient’s emotional life highlights the need for caregivers to avoid causing negative feelings and to try to induce positive feelings.”

Attempts to ensure an individual’s emotional wellbeing, therefore, should be at the heart of all care, and music is increasingly recognised as a powerful tool to assist in this aim. Of course, it has to be remembered that everyone is unique and what works for one person will not be appropriate for the next. A carer who likes nothing better than listening to hours of punk should not assume that those in their care feel the same way, equally, don’t assume that there isn’t a punk enthusiast amongst them either!

If we are looking for something to lift our mood, classical music is best, even if it’s not normally your favourite listening, according to Dr Mike Lowis. ‘In order to activate both sides of the brain, music needs to be complex so pop music and anything with a heavy beat doesn’t usually work,’ he says. (His study of peak experiences found that Wagner was more uplifting than Mozart.)

However, the inspirational and emotional story told in the American film Alive Inside, winner of the Audience Award at the 2014 Sundance Film Festival, would suggest that the true power of music is realised when particular tracks or genres are used to trigger memories and restore a sense of ‘self’, even in those with profound memory loss.

A quick story on how my husband continued to enjoy music as he neared the end of his life in a care home, rarely speaking, unable to do anything for himself, profoundly confused. As I prepared to say goodbye after one of my daily visits I asked him if he’d like any music on. He didn’t respond so I saw that a CD of one of his favourite musicians, Eric Clapton, was in the player and pressed the Play button, only to hear Geoff loudly lament “Not again!” as the sound of Clapton’s wonderful guitar playing filled the room. I had clearly not been the only lazy person in his room that day! It takes more than popping a CD into the player for music to work its magic. 

Fortunately, there are a growing number of organizations, campaigns and resources dedicated to making music an integral part of dementia care. We’ve included links to some of these below.

 

Resources on the use of music in dementia care:

Read more about Alive Inside and the work of Music and Memory, watch the trailer and purchase the DVD here.

Organisations that offer live music experiences:

Thanks for the Memory uses the power of music to create ‘Memory Moments’ and was established by Tim Ashcroft and his wife Renee, to help those living with memory loss or dementia and to help their families. They put on concerts for those with dementia and raise money to help other groups working with dementia patients and their families.

Lost Chord is a Charity dedicated to transforming the lives of those living with dementia and their families, using music in residential homes across the UK. 

Singing for the Brain is a service provided by Alzheimer’s Society.

Music in Hospitals Scotland is a registered charity and aims to improve the quality of life for people of all ages in care through the provision of professional live music. Concerts take place in hospitals, hospices, care homes, day centres and special needs schools, bringing the benefits of live music to people who need it most.

Resources for finding recorded music and creating playlists:

The Music for Dementia 2020 campaign shares best practice, research and music-based activities for people living with dementia. Their latest initiative urges people with dementia, their families and carers to build music playlists and offers free guides to help. They also offer a Musical Map for Dementia to help people with dementia find music related events and services in their area.

Playlist for Life has a vision: that every person with dementia has access to a unique playlist of their life, to help unlock who they are. Playlist for Life encourages families and caregivers to create a playlist of personally meaningful music on an ipod for people with dementia.

BBC Music Memories is a website designed to use music to help people with #dementia reconnect with their most powerful memories.You can use its databases to find favourite music – from classical to pop, to TV themes and even football chants – and create personal playlists.

Reminiscence Radio creates programmes featuring music from the 1940s-1970s, curated for people with short-term memory issues, designed to create a safe, reassuring place.

Information about the use and benefits of music in dementia care:

Dementia through Music: A Resource Book for Activities Providers and Care Staff, edited by Catherine Richard. An accessible guide to music activities for people with dementia for use by activity leaders, care staff and therapists, drawing on the expertise of people regularly using music in their work. Published 2020.  

The British Association for Music Therapy is a good source for further information.

The fabulous infographic from 3SpiritUK, the health and social care training company, contains a wealth of information on why and how music can help in the care of people with dementia.Click here for further information

Live Music Now and the University of Winchester worked in partnership with MHA (Methodist Homes) and The Orders of St John Care Trust to investigate the impact of music on residents, staff and the general care home environment. This has led to the report “LIVE MUSIC IN CARE”, which was published in 2019. The report finds that, “Carefully delivered music can provide significant benefits for older people, care staff and care settings, contributing to person-centred care. We recommend that regular participatory music programmes be considered essential for all UK care homes.”

“Music can soothe, stimulate and bring to mind long-forgotten memories” say Age UK in their information sheet on Dementia and Music.

5 reasons why music boosts brain activity, from Alzheimers.Net

How Singing Can Help People With Dementia, from Active Minds

Personal experiences and first hand accounts:

Pippa Kelly, a writer and campaigner on dementia and elderly care, often writes about music and dementia on her blog. She describes her personal experiences of witnessing the power of music to connect people even when their dementia is very advanced. She also features people, organisations and projects that  enhance the lives of people with dementia and their families through music.

Full time carer for his Mum, Martyn has written about Dementia, Music and Emotions.

In this clip from Women’s Hour on Radio 4, Agnes Houston shares her personal story about music, marriage dementia and hyperacusis (a condition that affects how you perceive sounds). It’s a powerful story and highly recommended listening. 

If you wish to recommend a resource for this page, please email feedback@carechartsuk.co.uk.

The use of dolls in dementia care, effective therapy or insultingly patronising?

Gary Mitchell RN describes how he overcame his initial reluctance to see the potential benefits of using dolls as ‘an anchor in an ever-changing sea of uncertainty’ for some individuals with advanced dementia. In this blog, Gary offers some advice on how dolls might be introduced.

Read more…

Gary would be pleased to respond to any queries if you would like to email him on gary.mitchell@fshc.co.uk

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Getting to know each other

Carer's Chart

We’re always going on about the importance of needing to know about a resident’s needs and preferences, but what about your staff? Might they like to share what they like and dislike, and might they learn something from the exercise as well?

Encourage your staff to share what matters to them by completing one of these free charts. With everyone’s agreement, display them where other staff, residents and their families can see them, creating an opportunity to appreciate what is important to each other. Generate a sense of mutual respect throughout your community, and create opportunities for meaningful interaction between every member of that community.

If you are using our Care Charts for your residents you will see that we have used the same symbols* as those on the resident’s charts. This helps make the point that we are all similar in having needs and preferences, that whether we are a carer or someone being cared for, we all have things in our lives that can cause pleasure or distress.

Download as many copies of the Carers Chart A4 as you need, encourage your staff to share, and develop the relationship and mutual respect between staff and residents and their families. Indeed, it may be appropriate to invite family members to participate as well.

And if you’re not already using our Care Charts for your residents, give us a call now, on 01403 210485, or email enquiries@carechartsuk.co.uk for further information.

*If you are using Style 2 and would like a Carer’s Chart in the same style please send us a request via email to enquiries@carechartsuk.co.uk.

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