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

 

Opportunities for self-expression and creativity by Alison Teader

We asked Alison Teader to tell us a bit more about Arts in Care Homes and the opportunities available for anyone in a caring partnership to get creative.

But firstly let us consider why the Arts?

There is plenty of research to prove that access to the arts makes people happier and healthier. Grayson Perry’s Art Club series showed how powerful the creative arts can be for bringing people together and giving them a voice. Everyone has the capacity to express themselves in any art form, it’s all about giving ourselves permission, encouragement, time and the space to try something new. For many, getting creative has been a lifeline during the solitary months of lockdown.

Arts in Care Homes believe that a wide range of arts activities should be offered on a daily basis to enhance quality of life and increase wellbeing and motivation in care. We are delighted that Alison Teader, Programme Director for NAPA Arts in Care Homes has taken time to share some creative opportunities we can all get involved in.  (Anna Park)  

Over to Alison…

Who are NAPA?The National Activity Provider’s Association or NAPA is the UK’s leading activity and engagement charity. Their vision is for the arts and meaningful conversation to become an integral part of care provision so people can live content, creative and connected lives. As a membership organisation they support people to develop the essential knowledge, skills, and confidence required to prioritise wellbeing and provide person-centred activity and engagement. You can find a wealth of useful resources, training opportunities and information about upcoming events on the new NAPA website: https://napa-activities.co.uk/

 

What is the Arts in Care Homes Project?

Arts in Care Homes is a five year project managed by NAPA and funded by The Baring Foundation and The Rayne Foundation. There is a wealth of arts activities taking place in care homes across England. These range from everyday creative activities run by staff members, including flower arranging, woodwork and watercolour painting to large scale arts projects such as A Choir in Every Care Home.

We want to promote and celebrate existing arts activities and encourage more.

In recent years we have launched the National Day of Arts in Care Homes on 24th September to encourage everyone to have a go by planning an arts event big or small involving any art form. Look out for more information about this year’s event coming soon on our user-friendly website, where you will also find a wealth of related resources, research and information: www.artsincarehomes.org.uk

A little bit about me… Prior to managing Arts in Care Homes, I worked as Creative Arts Co-ordinator at Central & Cecil, a London based housing trust, for over 20 years, working closely with staff, people receiving care, volunteers, relatives and artists to develop meaningful and exciting arts activities and opportunities in care homes and sheltered schemes. I was delighted to take up my current role, which enables me to build on my experience of and passion for developing arts in care settings and working with the very experienced and dedicated team at NAPA.

Four Fantastic Arts opportunities for everyone…

1 Art by Post: Explore and Inspire –  in collaboration with the Southbank Centre

This free creative booklet is for care-givers, people living with dementia or long-term health conditions as well as practitioners and professionals working in social/healthcare settings.The booklet is an invitation to take a sensory exploration with those around you, sparking the imagination, keeping minds active and feeling connected. We hope these activities generate inspiration from within your home, and encourage creativity and expression to blossom.

Explore and Inspire is a collaboration between Thessa Verwolf and Emily Chilvers from Nightingale Hammerson, puppeteer Nenagh Watson, Alison Teader and Natalie Ravenscroft from NAPA Arts in Care Homes, and the Southbank Centre. We believe it’s important for everyone to take time out from their daily routine to enjoy doing something creative.

We have 1000 booklets to post out, sign up for yours here. In addition to receiving Explore and Inspire, we’ll also send you a postcard each month with a different creative activity, inspired by our Art by Post community.

 

2 Treasury of Activities for Older People: Volume 2 – The Baring Foundation 

By Liz Postlethwaite, The Baring Foundation

This treasury includes 52 accessible and creative activities to inspire anyone working with older people.

Download a free copy here.

 

 

 

 

3 Every Corner Network – started Tuesday 11 January 10am – online monthly sessions

Creativity across care homes
This welcoming network meets online on the second Tuesday of each month to invigorate, inspire and create together. Each session is led by the Southbank Centre and NAPA (National Association for Providers of Activities for Older People). The sessions connect professionals and volunteers working in care settings across the UK interested in embedding creativity into every corner of the homes they work in. The sessions are free and require no previous art experience –all we ask is that you come with an openness to share your experiences and try new activities with us.  If you’d like to join us please email creativecare@southbankcentre.co.uk and we’ll add you to our mailing list. 

4 Only Connect Pen Pals

This Project began in 2019 as a response to the coronavirus situation. Originally a postal project we now ask pen pal partners to send messages of support, including letters, postcards, artwork and poems to care homes via email. We have already linked up over 300 care homes with Only Connect Pen Pal partners including, artists, art organisations, school children, families and individuals.

You can download the Only Connect Resource pack for care homes here

And if you are a Care Provider you can find out more about the project and how to sign up here: https://artsincarehomes.org.uk/aboutonlyconnect/

You might also be interested to read our latest consultation report asking the question:

What would it require for all care homes in England to offer their residents access to relevant creative and cultural opportunities on a daily basis?

Read the results of NAPA’s 2020 consultation with residents, staff teams and relatives: Arts and Culture in Every Care Home? NAPA Consultation report.

Click here for a free downloadable copy of the report.

 

To find out more about the Arts in Care Homes Project and the work we do to support the arts in care please visit our website: https://artsincarehomes.org.uk

Many thanks for listening,

Alison Teader

Programme Director, Arts in Care Homes
Website: www.artsincarehomes.org.uk

Twitter: Artsincarehomes
Facebook: artsincarenapa
Instagram: artsincarehomes

Self-Care Apps and Resources

Self-Care Resources

The lovely people at Dorset Mind have put together a wealth of self-care resources to support people to feel confident in managing their own mental health and well-being.

From inspirational talks, books and feel-good media to self-care guides, coping strategies and the latest Apps to help monitor moods and boost daily wellbeing.

Here’s our guide to three of the many self-care Apps that Dorset Mind have recommended:

The First free App we tested is called MoodTools, (2014).

 

 

 

 

 

 

 

 

This App includes a test for depression, a thought diary, activity suggestions and links to guided meditation videos, soothing sounds and inspiring Ted Talks on mindfulness, vulnerability and depression.

We particularly enjoyed the soothing sounds of forests, waterfalls, waves, classical music, gentle rain and white noise. (the App links to Youtube).

 

 

 

 

 

 

 

 

 

The mission of the App is to ‘package evidence-based therapeutic strategies and information in an accessible design’. Certainly it is simple to use and helpfully defines the different types of depression, the symptoms, the causes and explains the various treatment options including psychotherapy and anti-depressants.

The focus is on understanding depression and planning coping mechanisms including a ‘safety plan’ to support people when they’re feeling most vulnerable. The resources are mainly online but they are well chosen with something for everyone.

 

The second App we trialled is WellMind, developed in partnership with Dudley & Walsall Mental Health NHS.

 

The WellMind App (MHApp) has been designed to provide advice and signposting when you’re feeling anxious or stressed with practical ways to help you manage and understand your feelings so you can regain a sense of control.

The App asks you to record your mood including something you’re looking forward to, something you feel grateful for and something you’ve achieved that day. These responses can be added to a saved calendar so you can see patterns emerge and remind yourself of past efforts on darker days.

We particularly liked the guided breathing and muscle relaxation techniques to help you to stay calm during anxious moments – deep breathing is a skill that Julia Powell strongly advocates in her ‘Take Care of the Carer’ article out this month. (See below).

The App explains the effects of anxiety, stress and depression on different parts of the body so we can understand why our bodies may be responding in a certain way. Overall, it’s a simple but informative App with effective signposting to support networks and emergency contact numbers when self-management of anxiety levels becomes too difficult.

(The App also includes a very basic version of the snake feeding game which is intended to relax the player but is unlikely to hold anyone’s attention for very long!)

 

The third free App we tested was My Possible Self: The Mental Health App

 

 

 

 

 

 

 

 

 

This App began life as a series of emotional health and wellbeing services founded by Joanne Wilkinson whose own life was transformed by the support of experienced clinicians. With the help of her two daughters, and in partnership with the Priory Healthcare Group, the App was developed as a way of putting affordable mental health tools, clinical guidance and support into everyone’s hands.

My Possible Self encourages you to take control of your thoughts and feelings through guided modules and mindfulness exercises. These include; reframing your negative thoughts, being kinder to yourself, checking in on your whole body and concentrating on your breathing. The App allows you to record your experiences and symptoms and helps you to understand your moods, and the activities, people and places that influence it.

This is a much more sophisticated App than the previous two, it has animated graphics and a library of podcasts, exercises and toolkits including a food and drink log, physical activity log and mood tracker. It also offers positive affirmations, motivational graphics and a wide variety of articles and videos with the option to receive messages by email to encourage further engagement and regular mood monitoring.

We found this a comprehensive and accessible App, well worth installing. You need to create an account, but this is easy to do and requires no personal information.  There are plenty of features to explore and self-care techniques to learn to ensure you feel more in control of your emotional health and wellbeing.

All of these Apps, and many more, offer a range of self-care strategies and mood boosters to prevent you feeling isolated, powerless and emotionally trapped. Sometimes, simply taking a pro-active step to explore the support and advice available, helps us regain control, shifts our perspective and enables us to positively connect with the world again.

Hope you enjoy trying some of these Apps for yourself, do check out the other self-care resources that Dorset Mind recommend including the NHS ‘Every Mind Matters‘ plan, we couldn’t agree more. Good luck!

Anna C. Park

Please Note: We cannot take any responsibility for the downloading of these apps onto your mobile phones or devices but would love to hear how you get on and whether you find any of them helpful. Please send us a message here.

 

 

 

Feasts to Remember by Sally Knocker

Tomatoes on Toast and other Feasts to Remember

Food and Memory

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

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

Menus for a Lifetime

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

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

Recognising Cultural Identity through Food

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

Conversation Starters

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

“What is your signature dish?”

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

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

“What is your comfort food?”

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

Food Heaven or Food Hell Choices?

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

By Sally Knocker, Meaningful Care Matters Consultant Trainer

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

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

 

 

My Mum and Dignified Dining Solutions by Jo Bonser

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

by Jo Bonser

 

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

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

 

 

 

 

 

 

 

 

 

 

Interior Design in Care Homes by Jacqui Smith

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

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

Interior Design in Care Homes – Where to Start?

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

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

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

 

Light

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

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

 

Colour Contrast

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

Flooring

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

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

 

Acoustics

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

Decor and Furnishings

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

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

 

 

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

By Jacqui Smith

Homesmiths Interior Design Services

 

 

Book Reviews

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

Reducing the Symptoms of Alzheimer’s Disease and other Dementias

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

By Jackie Pool

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

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

 

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

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

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

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

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

By Anna C. Park

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.


Taking a Fresh Look at your Outside Space

Debbie Carroll and Mark Rendell are therapeutic garden designers who encourage care settings to take a fresh look at their care practices in order to engage actively and meaningfully with their outside spaces.

 

 

 

 

 

 

 

 

A few years ago they under-took an extensive research project to understand why care setting gardens were not used more actively, even when designed to the latest guidance, and particularly for dementia care settings.

This project took them on an extraordinary, and at times challenging, journey into understanding that the role of an organisation’s practices, attitudes and beliefs, its ‘care culture’, were key to understanding the level of engagement that residents had with their outside spaces.

Step Change Design Ltd was formed to uniquely support both the Care and Design sectors by sharing these findings.

Why Don’t We Go Into the Garden’ Map & Handbook  (including free infographic poster)

This in-depth diagnostic programme offers care settings a practical way of understanding what is hindering engagement to outdoor spaces, and guides them to see what physical and cultural changes are needed to ensure a new garden design will support meaningful daily access.

The map visually shows how to plan a route forward to a more relationship-centred way of working where the garden is more of an extension to a home/care setting all year round. This ‘tool’ will also support garden designers to create a more dementia friendly garden in relation to current care practices.

Purchase the ‘Why Don’t We Go Into the Garden’ Map, handbook & infographic here

The ‘Why Don’t We Go Into the Garden’  A3 lnfographic poster is also available separately. It summarises some of the key findings of the research with insights and tips on how to make the most of time spent outdoors. The statistics come directly from their large­ scale research project carried out with support from NAPA and other care sector agencies.

Purchase the infographic poster here

The Research

“We amassed a lot of data during our large-scale research project back in 2013. With NAPA’s valued support, we recruited 17 care settings across England and Wales. with the majority of residents living with dementia, into our study to find out the answer to a pressing question we had: 

Why aren’t care home gardens being used more actively?

“Our findings identified the central role that care culture played in influencing how well gardens were being used. We discovered that the more progressive the care culture was (i.e. person-­centred or relationship-centred) the higher were the levels of engagement with the garden, regardless of whether it was designed. We also found that fearful attitudes towards Health and Safety effectively ‘capped ‘ engagement levels with the garden. This slowly evolved into our now familiar Care Culture Map and Handbook. 

“What we hadn’t done until recently was to do a deeper analysis of the quantitative data (i.e. the numbers, quantities and amounts of activities and happenings in the study). 

“Ten findings from this analysis activity stood out as being simple and achievable alterations to day to day care practices that would make a huge difference in engaging residents actively and meaningfully with their gardens. We were mindful that our work with care settings is primarily about encouraging behaviour change and so we felt sharing these findings would be best done via a colourful infographic poster.

“The infographic style also enabled us to distil the information into a series of simple but clear statements that can encourage someone to pause and reflect on what they do. The poster format works well as it is something that people can gather around (just like our Care Culture Map) and it can be displayed publicly for all to see. 

“The poster can also help care settings compare their attitudes and practices towards the outdoors with other settings. For example, the average length of time spent outdoors per visit from our study was 41 minutes. In some cases, and in good weather, this was well over an hour. 

“Even in the rain, almost 4 in 10 residents in our study spent time outside, if they wished. So the poster is also a subtle means to interrupt deeply held beliefs and attitudes about going outside and is a useful tool to aid reappraisal of an important and often neglected part of the overall care environment at the care setting. And for those homes that actively engage with the outdoors with their residents, the poster is a great way to display to everyone the positive value that is already placed on this important and health-enhancing space. 

“We hope that the poster will be displayed prominently on notice boards so that residents, families, staff and managers can feel inspired by these tips and insights to enable fresh ideas about stepping outside or extending a visit to the garden. Above all, the poster articulates how simple changes to habits and routines, like taking a meal outside, or placing a bench along a path, can all help to create meaningful time spent outdoors for everyone at the care setting. 

For more information about the work of Step Change Design please email Mark or Debbie at info@stepchange-design.co.uk

This article on the creation of the infographic was originally published in NAPA Living Life Magazine Autumn 2019.

Free to print out and share: our Garden Wordsearch

 

 

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…

How difficult can it be to draw a star?

I was introduced to this little exercise at a recent regional Dementia Action Alliance meeting, and thought others might also find it useful; care home managers may like to do it with their staff.

Click here to print a star on to both sides of enough sheets of paper to provide one to each person, and on one side invite them to draw an unbroken line between the two stars, thereby drawing a third star, without taking their pen off the paper. They are unlikely to find that too difficult. Then, ask them to turn it over, position a mirror (you’ll find suitable ones in Poundland apparently!) at the top of the paper on the table in front of them so that the star is in view in the mirror, and ask them to do the same thing, but this time only looking in the mirror.

The idea is to create a sense of what it must be like to live with dementia where you are unable to complete what seems like a simple task. Don’t be surprised to see people experience shame, embarrassment, frustration, irritation, impatience… exactly what people living with dementia experience every day.