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

 

Feasts to Remember by Sally Knocker

Tomatoes on Toast and other Feasts to Remember

Food and Memory

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

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

Menus for a Lifetime

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

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

Recognising Cultural Identity through Food

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

Conversation Starters

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

“What is your signature dish?”

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

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

“What is your comfort food?”

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

Food Heaven or Food Hell Choices?

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

By Sally Knocker, Meaningful Care Matters Consultant Trainer

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

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

 

 

Interior Design in Care Homes by Jacqui Smith

Jacqui Smith is an experienced healthcare designer, running HomeSmiths with her husband, David.  She is an SBID Accredited Designer and Chair of her local Dementia Friendly Community.  Having permanently lost the sight in her left eye in 2012, Jacqui has personal experience of visual impairments and the role the built environment plays in supporting people with sensory loss.

Jacqui highlights the key elements of interior design to consider when planning and designing spaces for older people in care:

Interior Design in Care Homes – Where to Start?

The built environment plays a key role in the health and well-being of residents, affecting both their physical and mental health.  Good design can make the world of difference to how a resident, carer or relative will feel in a space. 

Like all design, function is the most important consideration.  A room might look beautiful but unless it serves the needs of the people spending time in it, and the furnishings and finishes have been chosen with practicality in mind, it will not “work”.  As we age, our senses deteriorate, and some people will experience cognitive impairment so the design must support these needs and enable residents to live as independently as possible for as long as possible.

I am a firm believer that care homes should be warm and homely, environments which residents can relate to and settle in quickly.  Whilst yes, the designs should have impact and an element of aspiration, I do not subscribe to the idea that care homes should emulate the 5-star hotel aesthetic.

 

Light

My starting point would be to maximise natural light wherever possible.  Window treatments should be dressed back from the window and at the same time allow strong daylight to be filtered when necessary, to avoid glare.  Well thought through artificial lighting is a worthwhile investment.  The wrong type of light can have an enormous impact on a scheme and greatly affect the colour rendering of furnishings and wall colours, and also how people feel in a space.  I see many care homes fitted with LED lights on the correct assumption that after the initial outlay, maintenance would be minimal, yet the fitting is a cool blue light LED which renders any furniture or finishes with warm red tones a far from uplifting muddy brown.  Light fittings should be diffused to avoid glare and flexible task lighting is a worthwhile addition to a scheme enabling residents to adjust light levels to suit their individual needs.

Lighting can also affect our body clock.  Different colours of light have varied wavelengths which the human body responds to in different ways.  The cool blue light of the morning kick starts our body clock; the presence of sunlight stimulates the brain to secrete cortisol which promotes a state of alertness, preparing us for the day.  As the light changes through the day and then fades to the warm yellow of dusk, we receive the cue to start thinking about winding down and ultimately falling asleep.  The science behind this cue is the hormone melatonin which the brain releases towards the end of the day, which causes us to feel drowsy.  White and blue based lights will inhibit the secretion of melatonin which will consequently interrupt our body clock, upsetting our usual sleep pattern.  So, a cool blue light in a care home dining room at the end of the day is not conducive to a relaxed and restful evening for residents.  Difficulties regulating the body clock are common in old age and particularly significant for people with dementia, so getting the lighting right is essential.

 

Colour Contrast

If I had to pick one thing which can make a huge difference in supporting independence in living environments for older people, it would be colour contrast.  Contrast between objects helps residents make sense of their environment and whilst it’s vital to apply this principle for people living with dementia, it also plays an important role in supporting those with age related sight issues.  Ensuring that there is visual contrast between critical surfaces will help a person with poor sight, be it through dementia or old age, navigate their environment as easily as possible.  Skirting painted to contrast with the floor will outline very clearly where the floor ends, and the wall begins.  Architrave painted to contrast with the wall will define where the door is.  For two surfaces to offer enough contrast they must have a 30-point difference in their LRV, Light Reflectance Value which is a measure of the amount of light which a surface reflects back into a room where the lighter the colour, the higher the index.  The same logic applies to light switches and fixings like grab rails in bathrooms.

Flooring

Whilst colour contrast can help define a room, contrast in adjacent flooring surfaces should be minimal.  A dark threshold strip or a dark floor mat against a paler toned floor can appear like a step to a person with dementia and might present a trip hazard.  Similarly, dark door mats can, to some people, look like a hole.  Ideally the flooring throughout the home should be the same colour regardless of the surface.

So, colour contrast comes into consideration in choice of surfaces, but the finish of those surfaces is also important.  Hard flooring must be anti-slip especially in wet areas such as bathrooms where an even higher anti-slip level is required.  It’s also important to select finishes that do not cause glare so better to avoid polished surfaces, choosing matt and brushed finishes instead.

 

Acoustics

Poor hearing is something that affects many older people and can in some cases lead to isolation and increase the speed of cognitive decline.  Interiors should be designed with acoustics in mind, maximising sound but minimising noise.  Think about position of kitchens and lifts in relation to resident areas and consider finishes choices such as acoustic flooring, noise absorbing window treatments and furniture such as room dividers which can help.

Decor and Furnishings

Furniture and décor should be relatable, and the layout of the room should encourage social interaction with clusters of seating, ideally with varying seat heights so that residents can select a chair which most meets their comfort needs.  Corridor seating is important, providing residents with resting places as they move from one part of the home to the other, encouraging them to be independent and sociable.

Colour itself plays an important role in designing for health and well-being.  The correct choice of colour can make an enormous difference to how a person experiences being in a certain room, affecting how they feel, behave and interact with others.

 

 

Art and accessories are often seen as a ‘nice’ to have but I do think they are an important part of a home; not only do they make it more domestic in feel, they can also be used to help residents remember where they are, as many people will navigate by objects rather than words or colour.  Which brings me on to wayfinding which should be enough to aid navigation but not ‘overkill’.  Wording on signs should be clear with an easy to read choice of font and good contrast; light text on a darker background is preferable because it’s easier for the ageing eye to see than dark on light.

By Jacqui Smith

Homesmiths Interior Design Services

 

 

Book Reviews

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

Reducing the Symptoms of Alzheimer’s Disease and other Dementias

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

By Jackie Pool

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

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

 

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

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

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

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

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

By Anna C. Park

https://uk.jkp.com/collections/author-jackie-pool-pid-200849/products/reducing-the-symptoms-of-alzheimers-disease-and-other-dementias

 

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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.

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.

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

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

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

Access the full report here…

Care Homes can now join John’s Campaign

Why should care homes join John’s Campaign?

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

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

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

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

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

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

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

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

 

Oreo, spreading happiness and joy

Orleo the cat

How Therapy Cats Can Bring Countless Joys to Older Adults.

St Augustine Health Ministries, a nursing home in Cleveland, Ohio, has a very unusual 4-legged occupant, Oreo the cat. Previously a stray cat, Oreo has become a beloved member of the St Augustine family. Her main job is to keep everyone happy. The residents love having her around and enjoy taking photos of her, something which stimulates their creativity, while employees can’t help but smile when they see the black and white feline doing her rounds at the home.

Many of the residents had to leave their beloved pets behind when they moved into the home, one of the challenges facing elderly people who choose to make the transition into a care facility. Oreo the nursing home cat lends a personal touch to the environment, making residents feel more at home. Here are some of the many ways in which having a cat around can improve the quality of life of nursing home residents.

Mood improvement

Elderly people often become lonely and depressed and cats are ideal to help them overcome this loneliness by offering independent companionship, affection, entertainment and a sense of responsibility.  It’s a known fact that cats can lighten any mood and lend purpose to the lives of anyone who comes into contact with them.

Improved health

Cats generally require fairly little human care but the care they do require results in much-needed exercise among older people. Even those suffering from arthritis or with other physical limitations can care for cats without too much effort. Caring for a cat may call for new activities and routines that are important for both mental and physical stimulation. Caring for an animal is very rewarding and can be of great benefit to the overall health of the older generation, to the extent where it can help them live longer.

Why cats and not dogs?

  • Dogs also make for great pets but they require a lot more general care, training and exercise than cats do, things that elderly people are simply not always up to.  Cats are definitely a more suitable pet option for a nursing home environment for the following reasons:
  • Cats are generally more than happy to remain indoors for most part, unlike dogs.
  • Cats require approximately 20 minutes of playtime a day which does not necessitate the owner being mobile. Cats are more than capable of entertaining themselves with the help of kitty-friendly toys such as a ball of yarn or a wind-up mouse.
  • Cats enjoy sleeping on a human’s lap or bed and don’t require a special bed like most dogs prefer.

Pet ownership brings a great deal of joy to the elderly and should be encouraged when viable. The benefits, both emotional and physical, speak for themselves and in terms of companionship now one will be more loving and loyal than a much-cherished pet.

Photo by kitsanoo on Unsplash

Many thanks to Lucy Wyndham for sharing this story.