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.

 

 

 

Taking Care of the Carer by Julia Powell

This post originally appeared in ‘Julia’s dementia blog‘ in October 2017. We are really grateful to Julia for sharing her personal story with us and hope that it will help other carers in the same situation.

Take Care of Yourself First

Whether you care for a relative with dementia at home, visit them in a care home, or are a professional carer you need to be mindful of the potential toll on your own physical and mental health. It’s helpful advice that I dismissed. I suggest you don’t make the same mistake.

Carers taking care of ourselves

 

 

 

 

 

When I started caring for my mother, I was touched by kind messages from people I hardly knew telling me to take care of myself. I struggled to understand why there was so much emphasis on the carer. After all, it wasn’t me who was desperately anxious, confused and vulnerable as my mother was. And I already looked after myself.

Above all, I wasn’t the primary carer (at that time); my mum lived in a care home. I didn’t face that burden. I just visited my mum. I was almost embarrassed at the idea I might be at risk….

Three serious infections in two years

…And yet, perhaps it was no coincidence that since my mum’s problems started, I had three serious infections, two of which triggered sepsis, and resulted in hospital admissions. Normally, fit and healthy, my first infection was within a couple of weeks of my mother being admitted to hospital. For me a urinary infection, quickly moved to my kidney, and affected my liver. I was cared for in the same hospital at the same time as my mother, though she was in a locked ward.

My last infection was severe pneumonia which led to pleurisy, and infections of my gall bladder and liver. I remained in hospital for 10 days, until I could breathe enough oxygen into my lungs unaided. I think the trigger for my illnesses was the huge emotional turmoil of caring for someone you love, someone who is so deeply distressed.

Feeling emotional and down

One weekend, I found myself feeling flat and weary during a visit with mum. I hadn’t intended to spend five hours with her that day, but I didn’t like to leave as she seemed particularly needy and helpless. That evening I had planned to restart a fitness class which I had neglected. I was looking forward to it, but while I was with mum, I started feeling physically tired and a little unwell. I talked myself out of the class, although it was probably the tonic I needed.

This ‘down’ feeling came from nowhere and sometimes took hold of my mood for several days at a time. It’s not unusual. Everybody feels blue from time to time. The problem was that someone I loved was living in a nightmare.

The cognitive impairment caused by the disease made it hard for mum to make sense of everyday things, her insecurities were amplified, her self-esteem assaulted, and she often ended up feeling scared and vulnerable. On top of that she was in a strange place, that because of dementia, never became familiar. As she often said to me “I am scared out of my pants”.

Physical and mental health toll

Caring for someone with dementia can have impacts you wouldn’t expect. “Carers of people with dementia have increased risk of developing dementia,” according to dementia care expert, Teepa Snow.

“Compared to non-caregivers, carers for people with dementia visited their GPs 50% more and took up to 86% more prescribed medications,” according to Alzheimer Scotland.

Family caregivers of people with dementia are “often called the invisible second patients”, according to an article in Dialogues, a clinical neuroscience magazine. “The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship.”

literature review on the topic  concluded, “It appears that the majority of dementia caregivers are sufficiently disturbed to be of concern to the mental health professions.”

Reaction to emotional distress

Without the responsibility of managing mum’s daily needs, I didn’t face the 24-hour physical and practical job that some families do. The major impact for me was at an emotional level. I felt guilt and sadness. I was haunted by the thought she would be better off in her own home if only I was willing to support her. My sadness about her ongoing distress was at a deep and visceral level.

I was initially reluctant to connect my illnesses, with the situation my mother was in. Having subsequently learnt about the clear connection between mind and body, I think there is no getting around it. It is likely that my own emotions increased my susceptibility to illness.

So, although I already took good care of myself and my caring role at that time was minimal, I became more conscious of symptoms and moods, and more dedicated to preserving my physical and mental health. I learned to seek medical advice early if in any doubt at all. My persistence in getting medical attention during my third infection may well have saved my life. Not trusting my second diagnosis, I admitted myself to A&E where I was soon diagnosed with double pneumonia which quickly led to sepsis. In the UK, over a fifth of the 250,000 people who are affected by sepsis every year, die from the condition.

Take care of yourself

If your primary concern is your loved one, don’t forget you won’t be much use to them if you become ill. Teepa Snow, suggests you won’t be good company either, “If you’re in survival mode, you are not the kind of person that someone with dementia wants to be around!”

Even if you don’t think you are susceptible to physical or mental health strains it makes sense to be proactive. Alzheimer Scotland has put together a very useful guide for carers called ‘Looking After Yourself’ (PDF). I include the top tips here, though the whole document is well worth a read:

  • Exercise: Keep up or take up exercise and outdoor walking, as far as possible. It helps you to stay healthy and relieve daily stress. You may even be able to do some activities with the person who has dementia. Exercise is also very good for people with dementia, as I highlight in this post about tackling anxiety and depression.
  • Sleep: Regular sleep and rest are essential. If you don’t get enough rest it can lead to depression and affect your health. A leading neuroscientist recently highlighted a link between poor sleep and increased risk of developing dementia.
  • Health: Watch out for signs of your own physical or mental distress. Keep an eye out for symptoms that may seem benign at first. Don’t be afraid to get them checked out with the doctor. If you find you’re not sleeping, or constantly feeling down go to your doctor.
  • Relax: Try to take time out to do the things that you find relaxing such as getting a massage, doing yoga, or listening to calm music.

Breathe

Teepa Snow has advice about how to manage those stressful moments when you are with the person you care about, in the first of a great series of short videos for carers.  Take “three deep cleansing breaths” when you find yourself becoming fraught or distraught. This is important to address our physiological reactions to pressure. When we start feeling stressed our bodies tense up and our breath becomes shallow. We breathe in, but not out, as we go into survival mode. This stops us getting enough oxygen into our brain, which affects the emotional control centre and the front part of the brain that helps us to make good decisions. This short little exercise that you can do again and again, helps you to take care of yourself, and enables you to take better care of your loved one. Watch the video. When my mother was feeling anxious, I led her through a version of this exercise too.

Julia Powell now runs mindfulness courses and coaching for carers and people living with dementia. Contact her at julia@juliapowell.co.uk to be added to her mailing list for upcoming courses.

 

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.


Picture News Care – Resources to stimulate engaging discussions

Using positive news to help care home residents re-visit their past and bring purpose to the ‘here and now’…

The Picture News Story – where it began

The dedicated team at Picture News have been providing current affairs resources to spark meaningful discussion for young people in schools since 2017. They are passionate about supporting children to find their voice and help them to develop their character, talents and personal interests. When they reached out to residents in care homes last year with an intergenerational Hearts for Homes project, they saw how their resources brought similar benefits and value to older generations too, thus Picture News Care was born.

Picture News education and care home packs are written using the same themes, questions and information so that children and care home residents can connect sharing ideas and views together. As the intergenerational charity Ready Generations explains; ‘Resources can be used to bring generations together promoting relational connection and life-long learning through inclusive activities that value everyone’s contribution.’

What Activity Resources does Picture News Care include?

(All the resources are digital format/printable).

Firstly there is a big question poster with an engaging image and a positive news story to enable staff to lead an informal discussion with residents.

The News resource offers a range of different topics to stimulate personal interests, encourage the sharing of personal viewpoints, spark memories and think about what is happening in the world with open-ended questions.

There are two further resources:

The first is a themed activity sheet with word games, a quiz or crossword.

The second is a page of sensory suggestions to stimulate residents who may find it difficult to engage in discussion. The resources use NAPA’s colour coding levels so that activity coordinators can pitch the resources to their residents’ abilities and level of participation.

Barchester Case Study

”When Pauline Davies, resident at Barchester’s Tandridge Heights, read an article in the Picture News Care newspaper about UK National Service post World War II, it reignited her sense of purpose. Her late husband John did his National Service at the same time as one of the recruits mentioned in the article, so she wrote to us with questions about him. Kelly, a carer told us, “It inspired Pauline to write about her own experiences and memories of her time during the war and her life since the war. It has become a very interesting read for all of us here at Tandridge Heights. Pauline has said it has kept her busy and her mind off this awful pandemic, so thank you so much!”

 

Case Study Two

”Christine Robson from York is bursting with chat when I meet up with her at a social distance. Married to Barry for almost 60 years, every conversation links to past memories. It has been in the news that BT are reviving red phone boxes across UK. Many have been reused for miniature libraries, a tiny museum on Scarborough seafront and homes for defibrillators in remote villages. Christine is keen to tell me that she didn’t have a phone at home until she moved home after college. She can still recall the polite voice of the speaking clock telling her, ‘At the third stroke, it will be…’ Her obvious creative streak is reignited when she chooses our additional drawing activity to design an impressive mini flower shop. Christine was a successful professional designer for more than 50 years, she tells me fondly.’

Sue Edwards, Picture News Care Consultant

If you’d like to claim your Free Picture News Care Resource for two weeks online supply please email:

hello@picture-news-care.co.uk

Please use the subject heading: ‘Mycarematters Free Offer

 

 

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.

In conversation with Anna Park

I first met Anna through the dementia care awards, when I was one of the judges and she was representing one of the shortlisted companies. Impressed by her passion and drive, I started to follow Anna on Twitter, and soon saw how she brings that same passion and drive to the wide range of issues that she cares about, whether it’s nature, dementia care or circle dancing!

So I’m delighted that Anna is now working with us to improve people’s experience of care, and I’m sure you’ll find her comments and observations here as insightful and thought-provoking as I did.

What first drew you to the world of care?

I think it has to be said that experiencing a vicarage childhood meant care homes, hospitals and hospices were familiar places to me from an early age. This no doubt gave me an understanding of life’s challenges, an ability to sit and talk to anyone and a determination to always try and see the person and listen to their stories rather than focus on appearances or diagnoses.

During my degree, I had a wonderful placement teaching in a special school and a summer volunteering in a day centre for young adults with learning disabilities. I had fully expected to train as an English teacher and specialise in SEN but these experiences and a temporary position working in a Mencap group home changed my direction and shaped my understanding of what person-centred care could and shouldn’t look like. I realised then that there was far more needing to be done to train and support adults in care than I could achieve in the mainstream classroom.

I went on to take the position of a Day Services Social Worker in a Multi-Purpose Day Centre where I joined a fabulous team of passionate creatives who fully recognised the value and contribution of every individual. There was a clear focus on self-advocacy, accessing the arts and fulfilling individual potential. For eight years I ran sessions in collaborative song-writing, IT/magazine production, symbol/communication techniques, skills for work as well as dance and drama performances for all ages and abilities. The aim was always to support people to develop the skills and confidence to create, express themselves and fulfil long term goals.

The opportunity to install and assess the learning opportunities provided by a new interactive sensory music & coloured light system became the subject of my Post Grad study (P.G.C.P.C.E) and led to my next position as a consultant and trainer at OptiMusic and later OM Interactive. It was my work developing the Mobii interactive table that would further immerse me in the world of dementia care.

From a family viewpoint I was also being drawn into the world of care through the experiences of my grandparents, one on each side developing dementia whilst in their 80s. My Grandad’s lifeline in care was continuing to play his keyboard, having spent his whole life playing the organ for his local church. For my Grandma, a teacher, collector and keen gardener, it was important that she was surrounded by familiar objects and photos and had essential access to a garden. I continue to advocate the vital importance of fresh air and nature to anyone who will listen! The years my Mother worked as a care home relief manager also gave me an insight into the daily demands and rewards of life working in a care home.

You work / have worked with some other great organisations, can you tell us a bit more?

Yes, my work with sensory technology, from the mid 90s onwards, led to some exciting collaborations working alongside the creators of the first interactive musical light beams (OptiMusic) and then pioneering the use of interactive projection technology in dementia care (OM Interactive). I had always been passionate that music and the arts should be accessible by everyone, and my Post Graduate research evidenced the enormous benefits of using technology to give people creative control.

It has been exciting to be part of a new era in person-centred technology, I thoroughly enjoyed developing the content and purpose of the Mobii interactive table and researching its effect on people’s emotional and physical wellbeing. It was very humbling to have this work acknowledged as the Most Outstanding Product at the Dementia Care Awards in 2018.

However, my years in sensory product development have also taught me the huge importance of training, care culture and emotional intelligence. Any interactive tool relies on the skills and abilities of those using it, the more person-centred the session delivery, the greater the response. No product can be a ‘fix all’, they have to be in the right hands, our carers are still our greatest resource.

I have been very lucky to meet some incredible people in the world of dementia care. I was particularly honoured to be asked to become a Special Adviser (Learning Disability Inclusion and Technology) for NAPA last year. NAPA (The National Activity Providers Association) is a charity who do so much to support and promote the delivery of meaningful activities in care with quality resources, training & guidance, newsletters/magazines, a helpline, annual conference and a fabulous awards ceremony; recognising the skills and dedication of care staff nationally. So I was more than delighted to join the NAPA team in a voluntary capacity.

Intergenerational work and exposing ageism are areas I am particularly passionate about, there is so much we can learn and gift to one another over the life course. As a Trustee of the charity Ready Generations I’m looking forward to encouraging greater connection across all generations with innovative community projects, an intergenerational nursery in a care home and research-led investigations aiming to shift perspectives and value the contributions of everyone.

As a teacher I still enjoy piano tutoring, particularly when that means re-igniting someone’s passion for playing. I have weekly sessions with a lady who is living with vascular dementia which have been both moving and joyful for both of us. I also call ceilidhs and barn dances as Hedgerow Tipple, which for me is the perfect way to share my love of music and dance with all ages and abilities.

What is it about Mycarematters that made you agree to work with us?

I have admired your mission to improve the experience of care since we first met at the National Dementia Care Awards in 2018. Your determination to ensure the needs of your late husband were made known to all staff in his care homes and hospital resonated so strongly with me. Having also lost a close family member to a progressive disease I understood the daily challenge of ensuring care remained person-centred when speech had virtually gone. Our family experienced the same frustrations and miscommunications whilst also recognising the difficulties staff faced when vital information was locked away in a file on an office shelf.

Honouring someone’s personal preferences can make the difference between a good day and a bad day. We experienced first-hand the consequences of information not being passed on with one oversight by cover staff sadly leading to a serious injury.  We would certainly have used Remember-I’m-Me Care Charts if we had known about them at the time. It’s so important for all carers to have an at-a-glance snapshot of needs and preferences and for families to be reassured that what’s important for their loved ones is actively shared and understood.

I also believe that Mycarematters profiles are important for encouraging conversation and connection, a reminder to always acknowledge the person directly and explain what’s happening rather than carrying out physical care tasks in silence. As a supporter of the Butterfly Approach I believe sharing this sort of information is essential for maintaining a sense of identity and belonging. We made sure that Sarah’s O.T certificate was above her bed alongside important photos including one of her proudly completing a helicopter flying lesson. These insights help carers to see the person behind the condition and talk about things that will be meaningful for them.

More recently I have been impressed by the My Future Care Handbook, an interactive guide which we personally found useful when navigating difficult conversations with my Mother-in-law, helping us to record her care and end of life preferences. A fabulous piece of work that everyone should be encouraged to complete for peace of mind about the future!

As a not-for-profit social enterprise I admire the ethos of Mycarematters and fully support their aim to celebrate the work of other small organisations who similarly strive to improve the care experience for all. So plenty of reasons to want to join the team!

What have you got planned for Mycarematters and its customers?

Well, firstly I hope to build on the fabulous work that’s already been done by continuing to raise awareness of our social enterprise and its mission to provide solutions, training and resources to improve the experience of care.

I also plan to expand our offering by inviting partner organisations to showcase their products, guides and training resources, because there is so much good work out there that deserves a wider audience. My monthly newsletter will help to keep our customers informed of our latest additions with specialist insights and our latest news and product updates.

I’d love to see Mycarematters become a hub of excellence, a first point of call for our care providers to source reliable information and a wide variety of tried and tested tools to help them deliver person-centred care to the people they support.

I’m also very conscious that Rogers & Kitwood’s term ‘person-centred care’ is in danger of being watered down through over-use, becoming synonymous with simply ‘caring’. I think it’s vital for us to focus on what it truly means i.e. to place someone at the ‘centre’ of their care, to see the world from their viewpoint and imagine how they are feeling; to literally climb into their chair. I’m reminded of Sara Livadeas becoming a resident in a Fremantle Trust care home when she was appointed CEO. A fabulous way to try and understand how it felt to live in one of their homes.

As the newest member of the team I’m conscious that any fresh initiatives will stay true to the Mycarematters ethos, supporting people in care to always feel included, valued and their presence acknowledged, regardless of cognitive or communication difficulties.

I look forward to supporting all our customers, sharing their stories and acting on any feedback so we can continue to improve the quality of our products and services. Carers, both paid and unpaid, are doing the most incredible work everyday, they are the greatest resource of all and our aim must be to support them with the right tools and guidance to carry out their important work to the best of their ability so the caring experience is better for everyone.

 

What does ‘planning for later life’ mean to you?

Planning for later life
A spectrum of needs
It has become quite fashionable these days to apply the concept of a spectrum – traditionally considered in terms of autism (as in being on the autistic spectrum) – to many aspects of our lives. So whether we’re talking about our sexuality, character traits or intelligence, there is a recognition that we may not conveniently fit into one category or another. Having a strong dislike of boxes and labels, I rather like this loosening of definitions, and I’m not surprised to find it true of people’s position on planning for later life as well.

People’s priorities differ wildly as to what is important when discussing the future, so asking what matters to them regarding later life inevitably throws up a huge variety of responses. They might be discussing appropriate adjustments to their home with an occupational therapist but have never considered what level of treatment they want if they get ill. Someone else may already have gone round the local care homes, picked out their favourite and got an Advance Decision in place but is in no hurry to appoint a power of attorney.

How far, and in which direction
There is also huge divergence in where the boundary lies as to how far people are prepared to take the conversation, and in which direction. “I’m not prepared to think about dying but I know exactly what music I want played at my funeral”, “I know I should… I’ll get round to it one day”, “No thanks, it’s not something I’m prepared to talk about”, “I must get this done now, before I need it”, “I’ve got it all sorted and my family know exactly what I want” and so it goes on.

No surprise then that attempts to increase the numbers of people completing advance care plans meet with limited success, when the forms tend to focus on collecting information the healthcare system would like to know, and may fail altogether to address the issues that are important to the individual.

Our approach with the My Future Care Handbook has essentially been one of: ‘Here is the information you need to make some informed decisions about your future, and the tools to act on those decisions. It is now within your power to choose which decisions and actions you wish to take, and when’.

We have aimed to cover everything, with a clear message that not all sections are relevant to everyone. From feedback received it seems there are a variety of approaches taken in terms of how it is used: some like to start at the beginning and work through to the end, others flick through and use the page markers to identify the sections they want to focus on first, and then there are those who dip in and do a bit at a time.

Keeping the scope as wide as possible makes it potentially relevant for every adult, regardless of age or state of health, and that approach was welcomed by Wendy Mitchell. “The front cover does not say it’s for people with dementia, people with cancer, people that are dying. The front cover is saying it’s for everybody.”
That wide remit called for input from a wide range of experts, both professional and by experience. So we were extremely fortunate to have a large group of people give generously of their time to help shape the content, tone and format of the Handbook, and it is undoubtedly the richer for it.

A thousand voices (well, a hundred anyway)

The value of this diversity of input was one of the themes to emerge during a Zoom chat with a group of people living with dementia, who had kindly put the Handbook through its paces.

As Agnes Houston put it: “it’s very clear this wasn’t done by a medical professional alone. The carers voices are through it, the voices of the people with long term conditions are through it. That’s what makes it so precious. You usually either get a carer’s view or a professional medical view or you get the view of the person with the long term condition. This is the first time I’ve ever seen anything where it is so, so inclusive. “

Wendy Mitchell agreed: “You can tell the minute you start looking through it that it’s not healthcare professional led and that immediately brings you in because it’s not some official thing that you are being told to read.”

That’s such valuable feedback for us, because we knew it would not be enough to provide a fact-filled resource, it had to be something that was going to get those of us reluctant to consider our future (and that’s, let’s face it, most of us) to make a start.

Alison Barclay, carer of her husband Gordon who lives with dementia, admits she’s a procrastinator and would rather do housework than start planning for later life… and she hates housework! But even she acknowledged that ‘if this book doesn’t get me doing it then nothing will.”

Sarah Reed, founder of REAL Communication Works, found she’d completed five or six pages before she’d even noticed. “It’s just so easy to follow. I’ve been thinking about my own will, my own needs… and what was surprising was how easy it was. Filling in a form on a page where you are being asked straightforward questions just makes it so simple. But if someone had asked me what I want, I wouldn’t have the faintest idea!

I didn’t realise…

This is something we frequently hear about one or more of the topics covered in the Handbook, and often from people who thought they’d covered most things. Alison didn’t realise there are now doulas for dying as well as for birthing. Wendy remembered she had not updated both her daughters about her funeral preferences, Frances found it made her think of things she hadn’t considered before.

Person-centred…
Because the Handbook is designed as an interactive workbook, what you end up with is a set of documents and decisions that are unique to you, reflecting your wishes, needs and aspirations for later life, end of life and beyond.

So, one size fits all? That’s perhaps going too far, but what we can say with confidence is that there’s something for everyone in the My Future Care Handbook, and whether you just fancy creating a bucket list, want to prepare a complete Advance Care Plan or need a prop to take the awkwardness out of the conversation with a loved one, all the feedback tells us it will work for you.

Order here. We are happy to send you a single copy for your personal use, or multiple copies for your organisation for your staff or clients.

Photo by Alex Block on Unsplash