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.


Supporting Eating and Drinking – Resource for Carers

Eating and Drinking Guidance for Carers

This booklet has been designed for all who support someone living with the later stages of dementia. It has been developed by a leading team of researchers and health & social care professionals including GP’s, speech & language therapists and palliative care experts. It has also taken into consideration the views and experiences of people with dementia. 

As dementia (and diseases like multiple sclerosis) advance, it is typical for people to experience difficulties around eating, drinking and swallowing. This booklet explains the physical and psychological reasons for these issues and offers a comprehensive series of strategies and resources to support carers & guide their discussions with key health professionals.  

With helpful tips on nutrition, how to offer food/drink and when to seek help, it also includes topics ranging from oral health to end of life hydration. An invaluable resource that has clearly been developed with considerable input from a leading team of experts in the field. 

Click here to download

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.

Sport: have we forgotten it?

Sporting Memories

by Emma Harris

We’ve all experienced that feeling when our muscles remember how to do something we thought our minds had forgotten, perhaps riding a bike or swinging a tennis racket. We may assume that an individual with dementia soon loses access to these memories along with names, places or facts, but our motor memories (or muscle memories) are actually amongst the last parts of our brains to be affected by dementia. This means that an individual may still be able to recall movements stored long ago in their muscle memories. Lisa Krieger of Mercury News tells the story of Jim Byerlee, an 84-year-old living with dementia, who was taken to play golf by his care home staff. Jim was able to swing a golf club with all the accomplishment of a retired athlete.

The Sporting Memories Foundation
Intergenerational reminiscence with The Sporting Memories Foundation

Like Jim, everyone has been touched by sport in some way, whether playing it, watching it, on TV or attending live events. As Tony Jameson-Allen, co-founder and director of The Sporting Memories Foundation, says ‘You don’t have a choice, everyone has memories of sport’. Sporting Memories advocate the importance of sport, not only to keep older people active, but as a way to encourage positive emotions and a sense of community through reminiscence. They work with care homes, libraries and other communities to organise groups sessions at which older people can discuss their own experiences of sport. Sporting Memories provides resources and training to staff to help them trigger memories and draw on the positive emotional impact sport can have. As Jameson-Allen explains, ‘one of the best ways to spark memories is other people’s memories’; they focus on the strengths of people with dementia: their long-term memories.

Sporting Memories discovered that talking about sport motivated participants to be active, and now organises reminiscence sessions followed by physical activities, including walking, football and curling. Joyce, a 96-year-old erstwhile ice dancer, is one such motivated person. She was taken to an ice rink by a member of her care home staff and, by using an adaptive frame, was able to experience all the sensations of being on the ice again.

Physical movement can play a vital role in improving the quality of life of an individual with dementia. It encourages physical and mental stimulation, can prevent depression and assists with sleep. Many organisations have discovered the power of active care and the numerous ways it can be tailored for all ages and abilities.

Table tennis for dementia
The BAT Foundation offers a ‘drug-free’ therapy for Alzheimer’s Disease.

The Bat Foundation describes exercise, or more specifically table tennis, as a ‘drug free Alzheimer’s therapy’. As part of their research, a team of neurologists took MRI scans to compare the brains of people with dementia who play table tennis and those who don’t. The scans revealed that certain parts of the brain light up dramatically in those who had just played table tennis; the concentration and co-ordination required to play the game stimulates the hippocampus and can delay cognitive decline. As a result, they have designed a table tennis table specifically for people with dementia, using colour contrasts to aid sight and side panels to assist with play. Annie Ingram, a voracious player, comments, ‘I can do this, I’m loving it!’.

Another sport which appeals to all ages is swimming and is known to have a positive impact on people with dementia, particularly because water offers a feeling of being weightless, thereby relaxing the body. But a public pool may be a daunting environment for someone with dementia and their carer. The Dementia Friendly Swimming Project aims to make swimming pools a safe and welcoming environment for people with dementia. They work across the UK, creating a network of dementia-friendly pools by producing guidance and offering training to swimming staff to achieve this aim.

Dance, on the other hand, is an activity which can be brought directly into the care home. Alive!, based in Bristol, offer dance and movement sessions which focus on the potential this activity has to help older people express themselves when they are no longer able to fully communicate their feelings; it’s about using dance to interact with individuals through rhythm and music. Alive! also offer training programmes to staff to help them bring active care into their own care homes, and run ‘Active Care Forums’ across the South of England for anyone working with older people. Becoming a member of a forum is a great way to pool new ideas and share experiences, whilst also gaining access to training, support and resources on active care.

JABADAO is a somewhat more unusual organisation. SPAGOG, Seriously Playful Armchair Games for the Old and Gorgeous, is a league event which uses basic movements and games with the simple aim of making life better. This is how it works: JABADAO teach the games to carers to play with their residents, the carers return the scores to the organisation, and results are published online weekly so care homes, friends & family can see which team is leading. Two finalist teams play against each other for the famous SPAGOG cup. JABADAO specialise in creating activities for people in late stages of dementia, and offer training for carers to improve the non-verbal communications of these individuals. Contact JABADAO if you’d like organise a competition in your area.

All of the above organisations, and more – see links below – offer the opportunity not only to maintain or increase physical fitness, but to become part of a community and interact with others through a medium other than speech. As Tony Jameson-Allen says, ‘it’s about friendship and keeping people supported just as much as it is about sport itself’. When words are a struggle, it can be the things which do not require any words at all that can offer us the most support.

Resources:

The Bat Foundation
Deliver specialised table tennis Alzheimer’s therapy programme

Dementia-Friendly Swimming
Organisation working to make swimming pools across the UK welcoming for people with dementia

The Sporting Memories Foundation
Work with communities to organise group sessions to discuss sport

Dance and Dementia
Offer dance sessions to individuals or groups

Alzheimer’s Society: Exercise in the early to middle stages
Advice from the Alzheimer’s Society on exercise for those in early to middle stages of dementia

Alzheimer’s Society: Exercise in the later stages
Advice for those in later stages of dementia

Association for Dance Movement Pschotherapy UK
Resource to find dance movement therapist for individual or groups

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

 

 

 

 

Two award-winning products… one fabulous offer

TNV Reminiscence 1950s

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

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

See more by clicking here..

 

Making time to share stories

Read our exclusive interview with George Coxon – Director/Owner of Classic Care Homes Ltd and Chair of the Mental Health Nursing Association (MHNA).

Here at Care Charts UK, we are always interested in hearing about new initiatives that are helping people who are living with dementia and as such, we were delighted to find out more about a new initiative set up by George Coxon. As George explains;

“We are part of the social care world where, if we live long enough, we will be the beneficiaries of entertaining, stimulating, fun and safe 24/7 care. Our lives remain important no matter what our age or circumstances and our precious moments must be shared – it’s these moments that make us who we are.”

We recently interviewed George about this initiative; ‘10-in-10’ and how it’s already proving very successful in enhancing people’s lives.

10-in-10 is a new initiative. What exactly does it involve?

There are multiple jobs to be done by anyone working in a care home, so time is of the essence. It’s extremely important in such a busy environment to add value to the lives of our residents. Keeping them safe is obviously of the upmost importance, but it’s also vital to ensure that they have a meaningful life and to do that, it’s essential that we know well (and are known well by) those we look after. The project draws on work done by the Alzheimer’s Society in their ‘This is Me’ initiative and by you with your Remember-I’m-Me Care Charts but builds upon them further to create an ongoing series of conversations between staff and residents.

The concept is quite simple – both parties share 10 year periods of their respective lives in just 10 minutes. This makes it fun, focused and perfect for maximising time-limited situations, while capturing things we didn’t previously know about each other from the key periods of our lives, like the schools we went to, the dreams we had when we were very young, our early life friends and our favourite toys or holidays.

What was the key thinking behind the 10-in-10 initiative?

The 10-in-10 project enables us to get to know those staying with us in a focused way and in just a short period of time. It enables us to learn more about each other and ensure that we have some good-humoured, quality time. By breaking it into manageable modules we can quickly learn about  each other, capturing themes and past life moments that can then be used to assist in some of the many and varied events, occasions and celebrations  we have at Pottles Court. The initiative is highly focused on making the lives of those staying with us better, but it’s also a fun way for our staff to get to learn more about them too.

What makes this initiative different or unique?

The initiative itself is an adaptation of other ideas that I’m sure have been trialled, but by branding it with a quirky headline it achieves more focus. 10-in-10 requires a two-way exchange based on shared lives, which we believe is more beneficial than the tendency to only have a one-way dialogue. The outcomes will be part of the work we are doing with our local research colleagues and the embedding of what we describe as ‘discovery conversations’ in our care plan compilation creates an active and ‘live’ part of the life stories and life history work often seen in care homes

What has been the greatest revelation from the 10-in-10 sessions you have held?

It’s still quite early days for the initiative but we have already seen some really useful learning taking place. It’s been really powerful to hear the detail of recollections from the first 10 years of residents’ lives and this has enabled staff to get a greater sense of who they are as a person and who they were when they were in their prime. Sadly these realities are often not acknowledged in later life when we become more dependent and less able to convey the confidence and spontaneity we enjoyed in our youth. Another really useful benefit has been witnessing the levels of ability people have to articulate their stories revealing verbal skills and recall capacity that might not have appeared as apparently previously. We have been very sensitive of course in not pressuring people to remember distant memories and as expected, some do very well while others struggle a little – this is a useful part of the ongoing assessment of not just those with cognitive impairment and dementia, but also those with normal memory decline associated with growing older.

Has the initiative been easy to implement?

It’s been very easy – as with all things in life, making time is the biggest challenge so having an in-house initiative that is popular with and talked about by staff, and that forms part of supervisions has given it real status in the home.  It’s about hearts and minds, enthusiasm and embedding ideas as part of a home culture – leadership and followership as we like to see it. Ideas are for success and trying things like the ‘shared lives 10-in-10’ project is but one of many of our projects and initiatives.

To find out more about the 10-in-10 initiative, or to read about the other projects undertaken by Pottles Court, please visit http://www.pottles.co.uk or check out their blog.

 

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.

Over 18,000 people requiring care now benefit from Care Charts

Map of care homes using care charts
Zoe Harris with a map of the UK showing where the award-winning Remember-I’m-Me Care Charts are being used.

PJ Care’s decision to introduce Remember-I’m-Me Care Charts into the daily life of their neurological care centres means that over 800 care homes and hospitals are now using these award-winning communication tools. Trials have demonstrated that Care Charts not only increase the quality of life of those being cared for, but can also provide peace of mind for their relatives, and boost staff morale.

“I first came across Zoe’s charts when she was nominated for the Innovation Award in the Great British Care Awards” explained Jan Flawn, Founding Chair of PJ Care. “I was made aware of them via one of the category judges and it struck me immediately what a simple yet effective idea this was. We pride ourselves on maximising the quality of life of each person we care for, so our staff members are highly trained and we have excellent staff / resident ratios, but it’s still difficult to be absolutely sure that every member of our team is aware of – and kept up-to-date with – a resident’s needs and preferences when communicating is a challenge. We chose the Twist-N-View version of the charts because they allow us to make key information instantly available whenever a staff member needs it, and keep it private when not being referred to.”

“The first Remember-I’m-Me Care Chart was designed to assist in the care of my husband,” explained Zoe Harris. “He spent his final 13 months living with advanced dementia in a care home, unable to communicate his needs and preferences. The care home recognised the importance of collecting information about an individual, but had no reliable method by which to ensure the information was made available to all carers and any other members of staff interacting with their residents. That first design is still popular, but I was aware that in certain environments it was difficult to hang the chart in a discreet manner, so we developed the Twist-N-View to address this issue.

“I’m very proud that prestigious care providers like PJ Care have recognised the value of these cost-effective and simple to use charts, and that they are having a beneficial impact on the quality of life of more than 18,000 people and their families, as well as helping to boost staff morale.”

PJ Care is a leading provider of specialist neurological care and neuro rehabilitation for people aged eighteen and over with progressive or acquired neurological conditions.

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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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