Some thoughts on meeting the needs of LGBTQ+ people in care by Phil Harper

We are delighted to have expert Phil Harper, Senior lecturer in Health and Care Management at Arden University, answer our questions for LGBTQ+ history awareness month. It is so important to remember that people in our care may well have experienced painful pasts, often hiding their sexuality for fear of discrimination both in their own families and from society as a whole. Many will have suffered verbal abuse and moments where they felt rejected by their local community, so it’s vital these life histories are understood and acknowledged. Hopefully this article will highlight some of the ways we can all begin to act and work more inclusively, avoiding subtle discriminations and creating a more welcoming environment for everyone.

Do we know how many LGBTQ+ people with dementia are currently receiving care in the UK?

Though we don’t know the actual figure, we can make a reliable estimate.

There are 1.2 million older gay and lesbian people in the U.K and if we apply this number to the fact that one in 14 people over the age of 65 may develop a form of dementia, then it can be estimated that there could be over 85,000 gay and lesbian people with dementia in the UK alone.

As 75% of people in care homes and 40% of people in hospital have dementia or memory problems, it can be assumed that many of those 85,000 LGBTQ+ people living with dementia will at some point need health and/or social care. Therefore, it is vital that care staff understand the needs of this demographic.

What are micro-aggressions?

Micro-aggressions have been defined as subtle, often not intentional, forms of discrimination (D.W.Sue 2010)

Examples of LGBTQ+ micro aggressions usually fall under these four main areas:

  • Terminology that discriminates against a LGBTQ+ person
  • Enforcing heterosexual norms
  • Disregarding people’s individual experiences
  • Not accepting that a LGBTQ+ person has specific needs. (see Nadal et al 2010)

 

How important is it to use correct terminology and language?

The positive use of language is essential in enabling an LGBTQ+ person to feel validated

Here are some examples:

Using the correct pronouns

In the case of a person who is transgender, misgendering an individual can often cause a person to feel isolated and not accepted. Using an individual’s pronouns can lead to the feeling of inclusion especially for a person with dementia who can present with differing levels of confusion.

 

Negative impact of labelling

According to Kitwood (1997) healthcare professionals often unintentionally cause harm through overlooking a person’s social needs, this concept is known as Malignant Social Psychology (MSP). Labelling a person is an example of MSP.

Sexuality is incredibly complicated, therefore, we like to put people into boxes and assign labels. This does not allow for the individuality of sexuality, for example, not every heterosexual person finds the same person attractive.

Kitwood famously said: ‘When you’ve met one person with dementia, you’ve met one person with dementia’. Therefore, we must not enforce our norms onto a LGBTQ+ individual living with dementia and make assumptions about their needs.

 

What does heteronormativity mean and why is it an issue in care?

LGBTQ+ individuals often try and conform to heterosexual norms and ideals due to societies championing of heterosexuality. This is known as heteronormativity.

Here are some examples that often occur in care:

  • Asking a new resident or patient if they have a wife or husband rather than partner
  • Decorating a care home (or ward) with heteronormative imagery e.g. only having posters with heterosexual couples on, or displaying artwork showing happy heterosexual relationships only.
  • Theming activities around heterosexual love

These occurrences of heteronormativity can have a particularly negative impact on a person living with dementia and may cause a person to ‘go back into the closet’, often due to a person feeling invalidated and fearing negative perceptions.

Heteronormativity can cause people to self-regulate their behaviours. This may be more evident in a person living with dementia due to it being common for an individual to resort to earlier memories and experiences, therefore, a person may revert to a time where being LGBTQ+ was illegal or less accepted in society.

The inclusion of LGBTQ+ affirming imagery and having welcoming conversations with health and social care staff is important in order to communicate to a LGBTQ+ person that they are valid and accepted in society and can continue to express their gender and/ or sexuality.

Why do older LGBTQ+ people so often fear healthcare?

There are many reasons for this fear, fundamentally it is caused by a lack of understanding of an LGBTQ+ person’s needs by health and social care professionals.

This lack of understanding can mean professionals:

  • Overlook the importance of non-heteronormative partners
  • Overlook a single person’s ‘family of choice’ formed of close friends.
  • Dismiss the potential conflicts between these families of choice and biological families – particularly when a person lacks capacity and professionals are making best interest decisions.

Partners and family members are experts in that person and are essential in providing individualised care but some biological families struggle to accept a LGBTQ+ persons sexuality or gender. Health and social care professionals should be encouraged to identify the conflicts between some families and the wishes of a LGBTQ+ person.

How might the environment and activities be adapted for LGBTQ+ people?

Reminiscence is an example of an area that needs to be culturally sensitive. Avoid the use of Memory lanes in corridors which may force mobile residents to re-live painful memories. Alternatively, reminiscence corners or boxes might be more appropriate and will not force reminiscence that is not individualised for residents. Activity providers should be aware of potential triggers before embarking on any reminiscence type activities like life story work.

Themed activities need to be fully inclusive and embrace art, literature and music that celebrates LGBTQ+ people and their relationships.

What are your hopes for the future in care?

We have moved forward in society and have become more tolerant of LGBTQ+ people; however, we need to do more, we need to move towards inclusion. Subtle and often unintentional forms of discrimination such as the micro aggressions discussed, need to be eradicated to achieve this. Safe healthcare environments need to be created. This can often be achieved through improved equality and diversity training and improved multidisciplinary working where LGBTQ+ support services and healthcare professionals work together.

Many thanks to Phil Harper for taking the time to share their thoughts with us.

Please see below for information about Arden University’s new Health and Care Chartered Management Degree Apprenticeship. A fast track to a BSc (Hons) degree in 2.5 years with a relevant level 5 qualification.

 

Health and Care Management Degree Apprenticeship Opportunity

Here at Arden University, we have developed a new Health and Care Management Chartered Management Degree Apprenticeship. This has been developed with social care in mind, a fast track option means anyone with a relevant level 5 qualification and appropriate management experience can complete the programme in only 2.5 years.

This accredited degree apprenticeship programme provides a professional pathway for management and leadership development. Participants will learn cutting edge knowledge and theory through the BSc (Hons) Health and Care Management degree modules, whilst developing and demonstrating new skills and behaviours in the workplace.

In addition to the Arden University honours degree, the Chartered Manager Degree Apprenticeship programme provides successful completers with the prestigious NHS Leadership Academy Mary Seacole Award and full Chartered Manager accreditation upon completion, ensuring all candidates gain the management skills and recognition they need to enhance their career.

If you would like more information, please follow the following link:

https://arden.ac.uk/our-courses/degreeapprenticeships/bsc-health-and-care-management-apprenticeship-cmi

or email the Programme Lead Phil Harper:

pharper@arden.ac.uk

 

Phil Harper

(They/Them)

Senior Lecturer in Health and Care Management

Programme Lead- Chartered Manager Degree Apprenticeship (CDMA) and Fast Track CMDA

Research Interest: LGBTQ healthcare, Ageing and Dementia Care.

Email: pharper@arden.ac.uk
arden.ac.uk

Arden University
Arden House, Middlemarch Park, Coventry, CV3 4FJ
Registered in England No: 2450180 | Vat No: 7053350 66

 

Book Reviews

We continue to add books to this section. If there is a particular book you would like to see included, let us know at info@mycarematters.org.

Reducing the Symptoms of Alzheimer’s Disease and other Dementias

A Guide to Personal Cognitive Rehabilitation Techniques   (JKP Press 2019)

By Jackie Pool

The culmination of a life’s work, this book is full of advice to help you or your loved ones manage the wide-ranging symptoms of dementia, with practical information, clear explanations and innovative solutions to a huge variety of dementia-related issues. Jackie Pool has almost forty years’ experience in this field and was keen to share her knowledge and research with anyone facing a diagnosis, offering support and guidance and dispelling the many myths that surround the condition.

This book appealed to me not only because I know and admire Jackie Pool, but because she has clearly put so much of herself into its pages. It is far more than just a self-help reference book, at times it’s a deeply personal and autobiographical account of her own experiences in dementia care. Jackie skilfully guides us through the minefields of psychological theory and scientific research to ensure we are empowered in our understanding of the disease and therefore able to approach the symptoms with greater creativity, hope and positivity.

 

If we understand the changes happening in our brains, or those of our loved ones, then we are far less likely to feel anxious and vulnerable, knowledge is power. Jackie draws on many personal examples to shine a light on a huge number of topics from maximising sleep quality, to improving communication, understanding the role of prescription drugs, maintaining personal care, and exploring the different types of memory.

Using the latest cognitive rehabilitation techniques Jackie explains how our brains have the capacity to ‘re-learn’ old skills and master new ones, ‘bypassing’ the damage using a process called ‘Rementia’, a term originally coined by the late, great, Tom Kitwood. It is fascinating to read about Jackie’s eight-year dialogue with Professor Kitwood via a series of letters she initiated due to her concern that the more holistic ‘social’ approach mustn’t be at the expense of maintaining and enhancing cognitive function.

As a skilled occupational therapist, Jackie has always understood that the key to living well with dementia is to be given the tools necessary to keep active, engaged and as independent as possible rather than become prematurely de-skilled or ‘dis-abled’ by relinquishing too much and having everything done for you. The writer, Wendy Mitchell, has often said that if she lived with a partner, she would have struggled to have maintained the independent skills she still enjoys. We are all guilty of ‘doing’ too much for someone we care for simply because we feel we ought to, its quicker or feels safer to do so, when actually giving someone the tools to, for example, make their own cup of tea or dress themselves, is of far greater benefit both physically and emotionally.

Jackie is not afraid to broach some complex topics in this book including neuroplasticity, delirium, cognition and the science of nutrition, but in all these areas we are invited to simply take as much information as we need to further our own understanding with plenty of pointers to extend our reading and helpful infographics to make the content even more accessible. The latter part of the book provides some useful templates for making daily plans and aspirational targets including examples from Jackie’s own PAL (Pool Activity Level) instrument.

Throughout this book, Jackie never loses her conversational style, it succeeds in being an informative companion guide and one I would hugely recommend for anyone living with dementia or supporting others to live as well as they can with the condition.

By Anna C. Park

 

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Dementia, Sex and Wellbeing

by Danuta Lipinska

Danuta has over 30 years experience supporting families, teaching, counselling and consulting on adult sexuality and dementia care. In this guide she brings her wealth of knowledge and insight to the fore, helping us to understand the cognitive impact of a dementia diagnosis on intimacy and relationships, and reminding us that our sexual identities and needs remain an integral part of who we are.

Her friendly conversational style makes this an incredibly enjoyable read as she expertly draws on her life’s work to aid our understanding of sexual behaviours as simply responses to a need for sensuality and intimacy rather than a ‘problem’ to be managed. The key message that our body and brain are one and ‘we separate them at our peril’ is central to this understanding. All our experiences, feelings, intimate moments and dreams are remembered by our bodies as much as our brains – therefore a dementia diagnosis does not mean a loss of physical knowledge and memory. A person can still consent to sexual intimacy without needing to know what day of the week it is because they still ‘know’ their husband and remember how it feels to be with them.

This is an illuminating read which embraces science, philosophy, psychotherapy and spirituality to help us to be more inclusive and self-aware in our conversations around sex and intimacy. After each chapter there are ‘Points for Reflection’ to guide discussions and chart shifts in our own understanding and responses. It highlights a real need for openness around sexuality and identity, someone may well reveal their true sexual self, following a move into care, after years of enforced repression. As Sally Knocker says in her Afterword: ‘It is rare to read a book where you feel that you have been in a very deep and meaningful conversation with its author…I love the fact that this is not about people living with dementia as somehow different or separate, it is a book about all of us and what it means to be vibrant sexual and sensual beings.’

Reviewed by Anna C. Park. Published by and available from Jessica Kingsley Publishers

 

Dear Life

by Rachel Clarke

Palliative medicine is Dr Clarke’s second career; her first as a journalist gave her the skills to evoke the kindness, joy and tenderness seen every day in a hospice, where death should dominate yet it is love and life itself that take centre stage.

Described as a love letter – to her GP father dying of cancer, to a profession where Dr Clarke helps people live the end of their lives as fully and richly as possible, to life itself – this is a beautifully written story of love and loss, invoking laughter and tears in equal parts.

Published Jan 30th 2020. Available from Amazon.

 

Watching the Leaves Dance

by Graham StokesWatching the Leaves Dance

As Keith Oliver writes in his Foreword, “Watching the Leaves Dance takes us once again, not into the realm of patients, carers or service users but into the lives of people…”. People, not their dementia, are again at the heart of this next volume of stories by Graham Stokes. People with histories, childhood experiences, family influences, all of which make us the person we become… and who we remain, even if dementia claims us. As Professor Stokes says, ‘dementia care does not exist. Instead, we must accept that we care for people with dementia.”
Professor Stokes has often had to look deep into peoples’ pasts to find the clues to their current behaviour, behaviour that may have been causing significant distress to themselves and those around them. Within each of these eighteen stories there are valuable insights wrapped in humanity: Cathy and Jimmy for example, teach us that good care is not measured by flawless appearances, we learn from Maria to be alert to the potential risks of reminiscence therapy, from Gillian and Spencer that dementia has no bearing on our need for closeness, touch and affection, and from Suzy to check the bus timetable before attempting to impose culture change in a care home. This book has something to say to anyone with even the loosest connections to dementia, and that, after all, is most of us. Be prepared to shed tears.
Published by and available from Hawker Publications Ltd.

Caregiver Carols: A Musical, Emotional Memoir

Caregiver Carols snipby Dr Don Wendorf

Dr Wendorf brings his combined experiences of phsychologist and psychotherapist, musician and caregiver to his wife of 40 years in this moving, informative, creative and practical memoir. Searingly honest at times, the author is prepared to tackle the toughest aspects of being a caregiver: guilt (a ‘good, normal, healthy emotion’), the ongoing sense of bereavement (‘I’ve been in denial about being in mourning’), how to accept help (‘don’t deny other loving people the blessing of being able to serve, comfort, support, help, care for, love and give to you’) and perhaps the toughest one of all, the impact illness can have on a couple’s intimate relationship.

The author blends a mix of song lyric rhyming verses with accompanying prose commentaries to make it easier, more effective and more memorable to get his messages across than the ‘standard didactic approach’. In describing his own emotional struggles as a caregiver, Dr Wendorf hopes to encourage other caregivers that their own feelings are tough but normal and manageable and that they are not alone.

Dementia: The One-Stop Guide

by June AndrewsDementia by June Andrews

I’ve had the privilege of hearing Professor June Andrews present at a number of conferences and have always enjoyed her unique mix of down-to-earth practical approach to dementia care and refreshing sense of humour, so I was delighted to see the same attributes appear on the pages of this invaluable book.

Advertised as ‘practical advice for families, professionals, and people living with dementia and Alzheimer’s Disease’, one might think it a little ambitious, attempting to be all things to all people, but I would defy anyone in those groups mentioned to read it and say they learned nothing. No subject is taboo, there’s lots of myth-busting and advice on how to negotiate a system which, the author acknowledges, all too often lets people down, plus comments from carers, professionals and those living with varying forms of dementia. If you’re looking for a jargon-free easy read, packed with practical information for anyone dealing with dementia in the UK and flashes of good humour to lighten the message, this is the book for you.

Click here to purchase from Amazon

On Pluto: Inside the Mind of Alzheimer’s

by Greg O’BrienOn Pluto front cover

Journalist Greg O’Brien writes powerfully about his ten year journey – so far – with Alzheimer’s. There are a number of laugh out loud moments as he paints a vivid picture of his daily struggles to find coping mechanisms and strategies to circumvent the disease that is determined to trip him up, and which will, he knows, eventually send him to Pluto, his allegory for the end stages of Alzheimer’s Disease. On every page O’Brien demonstrates how he is living with dementia, not dying from it.

Click here to purchase from Amazon

 

The Things Between Us – Living Words: Anthology 1

Living Words cover“Like dipping into a basin of water, and trying to hold the droplets in your hands as you splash your face with pure joy”. So says the late Lynda Bellingham in her resounding endorsement of this wonderful anthology of poems and words, collected from people living with dementia.

The charity Living Words has worked with people with dementia since 2007. As Founder and Artistic Director Susanna Howard says, when a person hears their words read back to them their sense of well-being and personhood is elevated…

Click here to purchase from Living Words

Dancing with Dementia

by Christine BrydenDancing with Dementia web

Author Christine Bryden continues to lead an active life and in May 2015 it will be an incredible 20 years since her diagnosis of dementia.

Christine was a top civil servant and single mother of three children when she received her diagnosis at the age of 46. ‘Dancing with Dementia’ is a vivid account of how she dealt with that life-changing news, exploring the effects of memory problems, loss of independence, difficulties in communication and the exhaustion of coping with simple tasks. She describes how, with the support of her husband Paul, she continues to lead an active life despite her dementia and explains how professionals and carers can help.

Click here for further information and ways to purchase.

 

 

Person-centred Dementia Care. Making services Better.

by Dawn BrookerPerson-centred dementia care

This was the first book I read about dementia care when my husband had to move to a care home in 2009 with advanced dementia and complex needs, and its value and relevance for anyone involved in providing care shone out immediately. Refreshingly honest and down-to-earth, Professor Brooker questions whether all providers who claim to offer person-centred care truly reflect the values that should lie behind this overused and misused term. She describes her book as an attempt to articulate the different elements of person-centred care and to describe what these look like in practice.

Frequently referring to Tom Kitwood as her inspiration, Dawn Brooker  explains the four key elements of person centred care that comprise the VIPS model: Valuing people with dementia and those who care for them (V); treating people as Individuals (I); looking at the world from the Perspective of the person with dementia (P); and a positive Social environment in which the person living with dementia can experience relative well being (S).

With an emphasis on practical application, Person Centred Dementia Care provides care organisations with clear, accessible guidelines on how to put the VIPS model into operation for effective care that is `fit for VIPs’. Part 2 of the book comprises the VIPS organisational reflection tool, which care providers can use to assess how well they think they are doing at providing person-centred care.

Click here for further information and to purchase.

 

The Bright Side / The Other Side

by Kate GrangerThe Bright Side Kate GrangerThe Other Side Kate Granger

Most people reading this will have heard of Dr Kate Granger, and of her struggle to live as normal a life as possible under the shadow of a terminal cancer diagnosis. As famous as the doctor herself is her inspirational ‘#HelloMyNameIs…’ campaign to encourage all health care staff to introduce themselves to their patients before delivering care. As Kate says on her website, introducing oneself is much more than just providing a name: it is making a human connection, beginning a therapeutic relationship, building trust.

Kate’s first book, ‘The Other Side’ is riddled with technical terms and medical-speak, making it quite clear which audience she wants to reach. Self-published, with all profits going to the Yorkshire Cancer Centre and orders being handled by Kate and her husband Chris so as to maximise the revenue for YCC, it reflects very much the author as she describes herself: ‘slightly bossy, competent but compassionate’ and no sign of the person she fears some will see her as: ‘that poor girl dying of cancer’. For us lay people, Kate has thoughtfully provides a glossary of terms, but one doesn’t need to understand the jargon to get the message. This is a doctor telling it how it is on the other side. Or, to put it another way, this is a patient with medical knowledge describing the progression of her illness, details of her treatment, and making it quite clear what worked and what didn’t in the huge variety of approaches and attitudes she experienced from her professional colleagues.

I read both books from cover to cover with barely a break, hauled in trepidation along Kate’s journey with a mixture of emotions, feeling her frustration when the medics got it wrong, delighting with her when she experienced compassionate, kind and intelligent care, reduced to tears when she, rarely, appears overwhelmed by pain and the desperate nature of her situation.

Being able to return to work allowed Kate to put into practice the things she had learned as a patient: proper communication – finding the right balance to avoid being patronising or confusing; getting the little things right such as getting on the same level as your patient when talking to them; remembering that you are treating a human being and not just a medical condition. It is clear from reviews and from Kate’s own comments that doctors and other healthcare staff have also adjusted their behaviour as a result of reading Kate’s books. I’d say they need to be on the compulsory reading list of every single healthcare professional.

This link will take you to Kate’s website where her books are available for purchase.

And Still the Music Plays. Stories of People with Dementia

by Graham Stokesand still the music plays web

Dr Graham Stokes has written a number of books on the subject of dementia care, but this is no ordinary instruction manual. Instead, the author recounts 22 compelling stories of people with dementia and looks beyond the obvious in an attempt to explain why some behave in the way they do.

You will read about Mr Abrahams who came alive when touched by human contact, how a window into Mrs S’s world opened when staff came to understand her aversion to shared toilets, and how Lucy’s quality of life was transformed when it was discovered what caused her to shout for hour after hour.

The central theme is that everyone is unique, and it is only by thinking deeply about each person individually that we can give the best possible care.

Click here for further information and to purchase.

 

Dear Dementia: The laughter and the tears

by Ian Donaghydear dementia web

As author Ian Donaghy says, “Dementia is an uninvited guest. It does not discriminate and is often merciless… but there is still laughter to be heard.” These short letters and over 100 illustrations, with their simple yet powerful messages, provide many opportunities for people to laugh and to cry, to learn and to ponder.  They are based on Ian’s own experiences and conversations with people living with dementia and their friends and family, including children.

This is a delightful book which has at its core a heartfelt plea that we focus on the person and not the dementia.

Click here for further information and to purchase.


Designing Clothes with Dementia in Mind

Innovations to improve quality of life 

As a social enterprise, Mycarematters actively supports small companies and organisations whose mission is to improve quality of life for anyone with long term health issues and their care giver/partner. Sara Smith neé Harris’s own experience of caring for a loved one with dementia led her to create her own clothing range designed to overcome many of the difficulties she had encountered when assisting with dressing and struggling to find stylish but practical alternatives.

The Story of Roaringly Precious

Roaringly Precious is an inclusive clothing company, specifically designing clothing for people living with cognitive and mobility challenges. The company was born when Sara, designer and founder, spent time caring for loved ones facing the challenges of dementia. She became frustrated with the lack of fashionable, easy to wear clothing available to help people maintain their sense of style and independence whilst providing for their specific needs. She decided to use her degree in textiles and costume design to do something about it.

All the Roaringly Precious garments have subtly built-in adaptations to make dressing easier. They use specific sizing rules, with loose fit styles that still fit and flatter the body. Some examples of their adaptations are larger openings without low necklines, easy fastenings and garments that are made to be worn either way so they never look back to front. These changes improve the dressing experience and promote independence and dignity.

We believe every person deserves the right to feel good about themselves and the clothes they are wearing.’

They consciously offer a smaller selection of styles but in a wide range of fabric choices so the clothing remains familiar to wear, whilst allowing people choice to express their taste and colourway preferences. They are a person-centred brand, interested in only providing purposeful products that will improve quality of life.

We work to support peoples’ abilities and skills, empowering and enabling them so their opinions are heard, their feelings are known, and their style and individuality is seen. We endeavour to provide inclusive clothing that solves issues, eases struggle, and provides people with a sense of comfort and enjoyment.’  Sara Harris

If you’d like to visit Roaringly Precious to see their latest clothing range please click here. And if you’d like to place an order, use Code MCM5 to claim your 5% discount.

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.

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

 

 

 

 

Mycarematters Display Options Now Available

Mycarematters Tablet and Chart

There’s now an alternative way to collect and share a person’s needs and preferences, using a simple online tool. Mycarematters has primarily been designed to ensure that a person’s needs and preferences are available without delay in the event they are admitted to hospital.

But the information needn’t languish unseen until that point. It can be used in a person’s home or in a care home to help paid carers develop a relationship with the person they are caring for. A person’s Mycarematters record can be viewed on a tablet or printed out and displayed in a number of ways to suit different environments.

We offer a selection of display options: click here to see the current range, or contact us by phone on 01403 210485 or by email so we can offer some suggestions on the best way to use Mycarematters in order to meet your needs.

Sight is precious

Jim took a lot of falls in 2012. His eyesight, dementia and arthritis were all conspiring against him. He’d wake up in the morning, forget he could not walk and think the lights had all been turned off.

We are introduced to Jim in a video produced by scie, dealing with sensory loss (see link below). The staff in the Cumbrian care home where he lives have had to learn to be very patient, and use concise, effective communication.  They try to communicate with Jim in a quiet area, so background noise doesn’t distract and confuse him.

It seems nothing can be done about Jim’s blindness, but that is not the case for many of those living in care homes and trying to cope with impaired vision. Whilst many homes diligently arrange sight tests for their residents, there are probably many more that do not see the need.

There is generally thought to be a correlation between dementia and sight loss, so a certain shrugging of the shoulders is inevitable, but dementia is already confusing enough for the person living with it so if there is anything that can be done to help them maintain senses like eyesight and hearing, it should be done.  Regular sight tests are important – it is possible to have an eye examination at nearly all stages of dementia  – to diagnose cataracts, check prescriptions are up to date and to assess for other conditions, treatable or otherwise.

Even if nothing can be done to improve a person’s sight, it is important to assess the quality of their vision so that carers can take it into account in their behaviour towards and around that person.

Yet, in a survey in 2014 the College of Optometrists asked their members how frequently they carried out domiciliary eye examinations in people’s homes or care homes.  Just 10% said they did so regularly in people’s homes and this dropped further to 6% for regular care home visits.

Such low numbers are not down to cost. If you are over 60, or over 40 with a close relative who has been given a diagnosis of glaucoma you are entitled to free eye examinations (in Scotland they are free for everyone). And for those unable to visit an optician unaccompanied due to physical or mental disability they are entitled to a free eye test at home.

So why are the numbers so low? First of all, there is undoubtedly a sense that ‘it’s just the dementia’. What’s the point in finding out about a person’s eyesight because it’ll make no difference? Those with that opinion should read the story of how the life of Suzy Webster’s Mum has been transformed (and how a potentially traumatic experience can be made so much more pleasant by involving the family) – see link below.

Research done by the College of Optometrists suggests that it is often the families who are not convinced of the benefits of an intervention, and there is plenty of anecdotal evidence to suggest that many professionals feel the same.

This is borne out by Thomas Pocklington Trust’s report (link below) quoting the RNIB who estimate that over half of older residents in care homes have some form of sight losss, yet care home residents’ co-morbidities mean that eye care interventions are overlooked or thought unnecessary.

What’s to be done?

As with so much in this world it comes back to communication. Bust those myths about it making no difference. Make it known that everyone in a care home is entitled to a free NHS eye test at least every two years. Build awareness about the importance of regular eye tests and the difference it can make to the individual’s quality of life where improvements to their sight can be made. As Suzy Webster says of her Mum after her cataract operation: “She’s a different person. She’s really got her spark back… she’s walking steadier, her mood is happier and she’s interacting with us all better.”

A look into the future

Simply slip a small device over the in-built camera on your smartphone. Turn on the Peek app, hold the phone close to someone’s eye, click and forward the picture to a trained eye care specialist.  This is the technology of the future to detect signs of glaucoma, macular degeneration, cataracts and other issues like high blood pressure. Social enterprise Peekvision claim that 80% of blindness is avoidable, and tools like theirs can replace an eye exam at a fraction of the cost. They should be shipping in early 2016 and expect it to be transforming lives in remote corners of the world… there’s a few lives waiting to be transformed right here on their doorstep. http://www.peekvision.org/

Photo by sk on Unsplash

Resources

Scie has a section on Dementia and sensory loss in their Dementia Gateway

The Age Page: Interview with Suzy Webster

Thomas Pocklington Trust: Undetected sight loss in care home

Vision2020 The Right to Sight UK (Dementia and Sight Loss Interest Group) working to increase the knowledge and information available for people living with dementia and sight loss has a useful  factsheet

Thomas Pocklington Trust: Design for Dementia and Sight Loss

The College of Optometrists’ Guidance for Professional Practice has a section ‘Examining patients with dementia or other acquired cognitive impairment’.

 

 

 

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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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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