Costume designer to facemask designer

Costume designer to face mask designer

‘As a costume designer, I was especially gripped by the shortage of PPE.’ 

As the Coronavirus pandemic unfolded, I found myself watching the news in helpless disbelief. As a costume designer, I was especially gripped by the shortage of PPE. Medical friends were saying that things where really bad, even though the government claimed it was okay.

Other concerned volunteers were forming and mobilising to help. With my partner Jake Farr, we created

Initially there were seven London groups but with the Visor Army project on Facebook, this has grown to around 130 groups all over the UK.

It was immensely comforting during this time to be able to concentrate on making scrubs and visors, small simple tasks I could do at home, that were being replicated in so many homes all over the country, collectively making a really big difference.

Setting up Acemasks seemed like the logical progression from this. As we ease out of lockdown, facemasks will be part of our ‘new normal’. Initially the idea of wearing a mask filled me with horror. After a few trial runs wearing a mask out and about, I felt really uncomfortable. Despite other people wearing them, I felt that most of them were looking at me in horror!

A friend sent me a picture of her in a medical mask she had decorated with multi-coloured dots. I really liked how she had made it her own. This spurred me on and I decided if I was going to do this, I needed patterns, colours and floral prints to make me feel more comfortable in a mask. I wanted to own the experience and communicate to others when they looked at me in my mask, “It’s going to be okay, we can do this!”

Living with loss and grief in a care home

Photo by Fabrice Villard on Unsplash

Part I – Living with loss and grief in a care home - A time for a bit of extra support?

Living with loss and grief in a care home during these times is a part of the every-day experience for carer, staff and families.

For anyone who is working in the care sector may need a bit of extra support at this difficult time. We asked therapeutic counselling specialist for people with dementia and REAL Communication Works advisor, Danuta Lipinska, to share some of her own experience and wisdom about such things.

In this article, you will find lots to reflect on and useful suggestions that can help you through this challenging time.

Caring for frail older people or even younger people with life limiting conditions or mental health concerns and physical disabilities or a dementia, you will not be a stranger to the ongoing nature of dying and death, loss, grief and mourning.

Care staff often say to me, “Well, it’s just part of the job. We do the best we can, and we usually don’t let it get to us too much.” 

But this is not just the job as usual. So why is it different this time? The nature of this pandemic brings us into the realm of Traumatic Loss.

This means that there is a deeply disturbing threat of actual or possible harm directly towards you, your loved ones, those you care for at work and the citizens of the world at large. Feeling frightened and anxious are natural human responses to trauma and the threat of trauma.

Fear of breaking down and losing control are also common..

Caring for residents with the illness, wondering when the next person will become unwell and supporting their death and dying, knowing that what we have done has not been enough in this case brings feelings of inadequacy, guilt, hopelessness and helplessness, great sadness and anger.

The losses associated with the Covid-19 pandemic arouse our basic instincts to threat and we respond in the instinctive way (our ‘gut response’) is Fight, Flight, Freeze or Follow (you can find out more here). We feel the loss of how things used to be in our care home and may feel powerless to change it.

Living with loss and grief in a care home is having a profound effect on the residents and many more of the women and men who live there are becoming unwell.

Some are going to hospital and not coming back, and some are dying in the home. You wonder if their death could have been prevented. You may not have had the chance to say goodbye to a person you have come to care deeply about over many years. Relatives, partners, children, grandchildren are not able to be with them as their illness progresses and their dying and death takes place.

You are responding to multiple losses – many losses at once. At work, at home, in your families, in the community, the country, the world. You have had to take on the management of the multiple changes within the care home that would not normally be occurring. Even if you have had an earlier quarantine event that required the home to shut down and relatives could not visit, you would have had an ending in sight when things could return to normal. At the moment we don’t know when the end might be.

Our basic needs for security and safety have been threatened. For some people, food and shelter, jobs and finances are affected. For many, their sense of wellbeing and being able to cope has been challenged and they are not themselves. We were unable to prepare for this and this can leave us feeling de-skilled and vulnerable.


Loss (or bereavement) is what happens as a result of the changes in our lives or the actual death of a person or pet.

Loss is the event that happens when we are rowing along the River of Life in our canoe and suddenly, we are thrown over the edge into a waterfall and the swirling whirlpool below. Along the way, over by the rocks there is a calm deep pool. We could end up in either or both of these places.

The losses associated with the Covid-19 pandemic arouse our basic instincts to threat. Our needs for self-protection and survival kick in and we respond in very basic human and instinctive ways (our ‘gut response’) Fight, Flight, Freeze or Follow.


Grief is what we feel and this can be a ‘whirlpool’ of many emotions all churned up and colliding with and washing over one another, or a quiet still pool where feeling numb and non-reactive is just another way of being with the loss. It is a process of stages that can come and go, co-exist and last for as long as we need them to. There are many ways people have written about grief. Possibly the most recognisable is the Five Stages of Grief described by Dr Elisabeth Kubler-Ross in 1969. They are Denial, Ange, Depression, Bargaining and Acceptance.

It is important to remember that we all grieve in our own unique way, and these are just guidelines that might help to make sense of your experience. If it doesn’t, that’s fine. Something and somebody else will be there to help you, if you ask, when you are ready. That might be tomorrow, it might not be for a long time.

At this particular time, it seems to me that there are a few kinds of grief that we are experiencing within this pandemic.

Global grief
My grief
Your grief

What if… grief (or ‘Anticipatory grief ‘ – our real worry and concern about what might happen in the future – can feel as real as if it is happening NOW).

This diagram might be helpful in visualising how your experience of grief might be at the moment.
Notice that the river does keep flowing onwards, away from the chaos and pain.

Living with loss and grief in a care home

A Whirlpool of Feelings

You might be feeling ANY or ALL of these… Being sad, angry, annoyed with others, numb, hopeless, feeling like arguing, in despair, swearing, ‘not myself’ shutting others out, sleeping more than usual, not sleeping, not eating, comfort eating, guilty (I am safe, others are not; can I be doing more? Why am I at home when I should be with my colleagues?), crying, frightened, alone, lost, ignored, suicidal, wanting to harm yourself, confusion, panic, anxiety, disbelief, astonished by kindness, hopeful. These and more feelings are natural in these difficult and uncertain times.

You might be by yourself at this moment, and you may be feeling alone, even in the midst of a busy care home. But you do not have to stay alone in your thoughts and feelings, you can be seen on an app, online if you choose, or on the other side of the fence at the back of your house.

Mourning is what we do to acknowledge the pain and the loss and offers a ritual, a tradition, a faith or spiritual based activity which focuses on the loss.

For some helpful tips and ideas on to cope have a look at Part II – Coping with loss and grief

With thanks to Danuta Lipinska 

About Danuta Lipinska

A passionate specialist in the understanding and care of any older person and those with dementia, successful author, counsellor, supervisor, Action Learning facilitator, trainer and International speaker.

Check out more articles and helpful guides covering ‘Wellbeing for Carers’ here >

Coping with loss and grief

Coping with loss and grief

Photo by Arno Smit on Unsplash

Part II – Coping with loss and grief and Some tips to help

What can we do about it?

When you stop to consider, take a deep breath. Perhaps you can share your feelings with a co-worker or manager and when you get home, with a trusted partner, friend or family member, your faith leader, counsellor, or call a Helpline. Their staff are there to listen to your concerns, not just to respond to suicidal feelings.

Talk and listen to one another

This is important even if we are not in the same room or close enough to touch or hug. You don’t have to do this by yourself, even though you may physically be alone.

Find a friend at the care home, or your manager. “I need a minute please” is a good place to start. Often your work colleague will know exactly what you might be thinking or feeling, as they share the same experiences as you. They might just be feeling or seeing things differently to you and that can be helpful for both of you.

If you are feeling overwhelmed, suicidal or self-harming, or your usual coping strategies are not working ­– you may be drinking or using more drugs than usual, call one of the Helplines listed below.

Take a break from the routine​

This will take just 5 minutes so why not go to the staff room, or step outside for a moment. Let a colleague or your manager know you need to take time out. Many managers have relaxed the usual routine of working to allow for more breaks in the long shifts.


Taking some deep breaths really can help clear the stress, anxiety, the ‘fog’ in our minds, bringing more oxygen into our bodies and brains which is really helpful for shifting our thoughts and worries (see here) and this helps bring new energy to tired muscles and organs.

Have a drink of water – now

Just do it! Even as a temporary measure until you can make your favourite warm drink or soft drink. Staying hydrated helps our mood and brain function – the place from where all the thoughts, feelings and behaviour are controlled.

Have a snack

Pizza, cakes, chocolate, fruit, raw vegetables with dips and healthy chips, nuts, drinks and goodies can keep spirits up in the staff room.

Ending the shift

Write down three things you feel good about today. It can be very simple. “I gave Barry a great shave”; “Marion really enjoyed her strawberry ice cream”; “I helped Amy talk to her Dad on the iPad.”
Write down the names of anyone you are especially concerned about and add a kind word next to their name.
Add the thought, “I have done the best that I could do today. Well done.” Leave the piece of paper in an envelope in your locker. Close the door and leave it there. Now you are ready to leave your work place and move to the next. You do not have to open the envelope when you come back tomorrow.

Remembering together

Recalling happy memories, though it may be painful, can also be comforting. Many care homes are gathering residents and staff together once a week and sit together, light a candle, look at photographs of the person in the home during activities or events and talk about the person who has died, playing their favourite piece of music, having their favourite dessert, baking a cake together for tea time, watching his/her favourite film with ice-cream cones. Everyone is encouraged to share a word, a brief thought or memory, aloud.

A Memory Tree

Photos of the person who has died and thoughts from anyone in the home about them can be written on the ‘leaves’ and hung from the branches of the tree. This can be a small tree with fairy lights inside the branches or painted onto a wall or a cut-out of a tree tacked onto the notice board.

You can be as creative as you like with these processes of community remembrance as it aids our grief and mourning process and acknowledges our shared experience of loss. Care home staff have said how helpful this can be, and the residents feel part of what is happening too. Which is also essential to their wellbeing.

Be gentle with yourself

Remind yourself that you are doing the very best you can in the situation. We think that you are doing a tremendous job and one that is often unseen and unheard. You are caring for the most frail, unwell and vulnerable people in our families and communities. You are providing caring and skilled accompaniment for women and men at the end of their lives.

You are ‘standing in’ for loved ones, families, friends and faith leaders who are unable to be there. What an important role this is and gives comfort to so many family members who cannot be there with their loved one. THANK YOU.

Samaritans HELP LINE 116 123 or Cruse Bereavement Support, 0808 808 1677
Whirlpool of Grief Dr Richard Wilson, 1992
Dr Elisabeth Kubler-Ross, The Stages of Grief 1969

With thanks to Danuta Lipinska 

About Danuta Lipinska

A passionate specialist in the understanding and care of any older person and those with dementia, successful author, counsellor, supervisor, Action Learning facilitator, trainer and International speaker.

Living with loss and grief Part I – A time for a bit of extra support?  

Face Masks and Dementia Care

What is the person saying?

By Sarah Reed 

How facemasks affect how we communicate.  The importance of emotional perception, expression and reciprocity in non-verbal communication is bound to impact the outcome of any doctor/patient or carer/cared-for interactions. 

Studies have demonstrated the impact of doctors’ and carers’ empathy and person-centred care on the enablement and health outcomes for the person in receipt of care with both chronic and acute conditions. In a large randomised controlled trial in 2014, it was found that the “wearing of facemasks by doctors had little effect on patient enablement and satisfaction but had a significant and negative effect on patients’ perceptions of the doctors’ empathy”.

We must hope that eventually, mask makers will recognise that clear panel masks are really the only ones worth using and start manufacturing them. However, in the meantime, the following tips are good for all our interactions with anyone at any time whether they have dementia or not, but are especially important now with the additional social distancing that masks create.

In communication, most of us rely on language – often at the expense of many other types of communication. However, nonverbal communication is just as important as the words we use. During these times of the Covid-19 pandemic, the use of facemasks has become ubiquitous and they present serious communication difficulties which should not be under-estimated, for the wearer and the person they are talking to, alike. 

Lockdown is one thing, but facemasks are prisons that limit the range of our actions and words.

In covering our facial expressions, face masks hide our emotions. For example, pleasure, sadness, frustration, annoyance and fear are all emotions that we show on our faces without ever having to say a word. And unspoken communications tend to be the same across most cultures. Given the increasing use of facemasks, this means of communication is becoming increasingly challenging.

Non-verbal communication is often the most effective element of communication when connecting with a person who has limited or impaired cognition or is living with dementia. People with dementia increasingly lose their ability to communicate verbally, but their body and para-linguistic interpretive skills are retained longer in most conditions and may even be retained right to the end of their life. They are usually able to interpret facial signals correctly and can be skilled interpreters, understanding when we are relaxed or stressed or conveying other subtle messages, making sense of things from the sound and inflection of our voice, our speed of speech, our posture and the way we move around. We know that when people have difficulty understanding, they will fill in the gaps by reading our facial expressions, the sound of our voice and body movements and posture.

Carers who are more alert to nonverbal cues are often well-practiced at reinforcing the other person’s perception of their sincerity, compassion, appreciation, dedication and competence. This improves their relationships with those they care for as well as their colleagues and also increases their ability to provide meaningful care.

Nonverbal communication provides unique opportunities to connect, so it is important to pay greater attention to our nonverbal communication in this time of social distancing and masked faces.

The following tips can impact and improve interactions with older people while wearing masks. Being focused on the challenge of this is key to success.

1. Pause and be mindful. Be self-aware

If things are busy and stressful, try not to let that be reflective in your voice. Make sure there is enough time for any interaction. Taking a moment or two for yourself immediately before an encounter can make a big difference to the experience. Creating a mental ritual to focus your attention before seeing someone, can help. For example, reflecting on the many varieties of communication that older people and their carers encounter in care settings, such as expert-layperson, healthy-sick, independent-dependent, cognitively healthy–cognitively impaired, young-old and family and so on, might be an option.

2. Be Calm. Smile inside – and outside

Show absolute respect. It is essential to approach the person from the front. This will help them to process who you are and what you are saying. Respect the person’s personal space and make sure you speak to them on the same eye level.

Good eye contact is most important. Use your eyes and eyebrows. Let your eyebrows tell the story. Remember to smile! The person may not be able to see your mouth, but they will be able to read the emotion in your eyes which will allow them to feel more comfortable and in control. They are very likely to be able to detect your body language, so remember that any sudden movements can cause distress and make it harder to communicate.

Be straightforward and try to stay calm. Project a positive, calm attitude and avoid any body language that shows frustration, anger or impatience. Try not to interrupt them and give them your full attention. Be flexible and patient.

Don’t just rely on giving information verbally. Using images, gestures, even written words, phone translation/text apps can be helpful. If the person is still able to read, it may be useful to leave any written version of verbal information that you use with them, so that they can refer to it later.

3. Speak clearly

Avoid noisy environments that might overwhelm with additional stimulus. It is useful to remember that 11 million people in the UK have hearing problems or are deaf. There are a number of hearing apps available on the market which can help. Firstly, create a safe space. and maintain your social distancing with a clear path. Ensure that any physical barriers that could block your view or further challenge your voice being heard behind the mask are removed.
Observe first, even if briefly.

Remember to smile! Always ensure that the older person is wearing their glasses or hearing aids. Your tone of voice includes your speed, tempo and pitch which can be as impactful as the words you are speaking.

Slowly communicate one point at a time. Use short, simple sentences and underline your words with appropriate gestures. Make your statement or ask your question and then pause. Keep your voice even, gentle in tone, and moderate your speed of speech. Go slow!

Lip-reading cues that many with hearing disabilities use to compensate will be absent, so make sure you articulate your words clearly without sounding forced, which may be taken as condescension.

Consonants matter! Speak louder if necessary but without raising your voice or its tone, because this might be perceived as aggression. Using NLP (Neuro Linguistic Programming) techniques of mirroring and matching the person’s gestures, vocal tone or mood can be re-assuring for them and help them feel better understood.

The messages we convey might be harder to interpret so we need to develop new habits, ensuring that we underline everything we say with gestures and pantomime. Going slowly with the person will make connection easier.

4. Remember to listen well

Listening is a vital part of communication as well. Making space to listen is very important in any encounter. However, in one randomised trial in 2010 it was found that “64% of the nurse participants had a weak knowledge of verbal communication skills and only 36% had relative knowledge about listening and speaking skills. This is while verbal communication skills are considered as the foundations of communication in everyday life”. your view or further challenge your voice being heard behind the mask are removed.

Observe first, even if briefly.

Remember to smile! Always ensure that the older person is wearing their glasses or hearing aids. Your tone of voice includes your speed, tempo and pitch which can be as impactful as the words you are speaking

5. Remember that our bodies speak as well

It is vital that we think about the ways in which we typically communicate, such as gestures and tone we use when we are not inhibited by distance and PPE. Once we become more aware of our characteristic gestures and body language, it is easier to align our nonverbal signalling with our spoken message.

Body language is vital to deliver meaning well and communicate effectively. Together, hand gestures and posture are very important. Our non-verbal cues should send message of kindness and empathy. Try to relax your shoulders. Remember to avoid crossing your arms in front of your body and keep your hands off your hips and out of your pockets.

It is always helpful to nod and add ‘mm’ and ‘yes’ when appropriate, as it acknowledges that you are listening and understanding.

Happiness can be seen by raised eyebrows, raised cheeks and crow’s feet. Remember to smile! On the other hand, eyebrows pinched together and eyes drooping can indicate sadness and when in a “V” shape can express anger.

The person with cognitive impairment may not recognise you at all in any encounter if you are wearing a facemask, even if they have spent time with you over many months, but we still need to make each connection count. As one wise soul once perceptively observed, “I may not remember what you said, but I will remember how you made me feel.”

Facemasks and perception of empathy

Here is an article from NCBI  – US National Library of Medicine National Institutes of Health. It is regarding a randomised control study that was conducted to explore the effects of doctors wearing facemasks on patients’ perception of doctors’ empathy, patient enablement and patient satisfaction. 

The report can be viewed here and it is titled  ‘Effect of facemasks on empathy and relational continuity: a randomised controlled trial in primary care’


About Sarah Reed

Sarah Reed is the founder and lead at REAL Communication Works.

Sarah lectures in Health departments at Kingston and City Universities. She now works with other highly skilled dementia care learning facilitators to deliver interactive REAL Communication workshops.

She has served on the SUCAB Service User and Carer Advisory Board in the School of Health Sciences at City University since 2017.

She is a Trustee of and thirty-year volunteer co-ordinator and monthly driver for national older people’s charity, Re-Engage (formerly Contact the Elderly). In 2015, she served on NCVO’s Volunteering in Care Homes advisory board. She is a member of the DH Quality Matters board.

Should we all be wearing masks?

wearing masks

Well, should we all be wearing masks or not?

The question of should we all be wearing masks has been argued since the beginning of the coronavirus in January 2020.

“So you get people who say, well, it’s not going to work. But you try having three big, huge football players who are rushing for lunch through a door at lunchtime—they’re not going to get through. In the latest data I saw, the mask provided 5x protection. That’s really good. But we have to keep the hospitals going and we have to keep the health professionals able to come to work and be safe. So masks should go where they’re needed the most: in taking care of patients.”

Source: Epidemiologist Larry Brilliant, Wired magazine 19 March 2020

Masks really are an important tool for fighting the coronavirus 

The N95 mask is a particulate-filtering facepiece respirator that filters at least 95% of airborne particles.

Source: Wikipedia

“The N95 mask itself is extremely wonderful. The pores in the mask are three microns wide. The virus is one micron wide. The mask pores are 0.3 microns wide; the virus is 0.12 microns.

“So you get people who say, well, it’s not going to work. But you try having three big, huge football players who are rushing for lunch through a door at lunchtime—they’re not going to get through. In the latest data I saw, the mask provided 5x protection. That’s really good. But we have to keep the hospitals going and we have to keep the health professionals able to come to work and be safe. So masks should go where they’re needed the most: in taking care of patients.”

Source: Epidemiologist Larry Brilliant, Wired magazine 19 March 2020

So where are we in the uk?

Well as of May 12 2020, the UK Government recommends homemade face coverings in shops, on public transport and in enclosed public spaces.This is what Boris has to say in story from the Guardian titled ‘What is Boris Johnson’s advice on coronavirus and masks?’.

And here’s a Nurse in the USA that didn’t just create her own replacement N95 mask—hers works better >>

So if you now feel really inspired to have a go yourself, here are some useful links on how you too can make a face mask:

From the BBC > Coronavirus: How to make your own face mask

Form the Sun > How to make a coronavirus face mask – all you need is an old T-shirt

From Good Housekeeping > How to Make Face Masks for Yourself and Hospitals During the Coronavirus Shortage

The Scotsman > How to make a face mask: ideas for creating your own face coverings at home – and where you can buy them online

From the Guardian > How to make a non-medical coronavirus face mask – no sewing required

Should we all being wearing masks

Face masks could be a better defence against Covid-19 than hand washing The Telegraph – 12 June 2020 >

From costume designer to face mask designer. A story of how one person decided they needed to help during the pandemic. By Petra Storrs >

Relieving anxiety during the pandemic

We can’t control outcomes

We all know that often, we cannot always control outcomes. Worrying about them is almost pointless, even though nearly all of us find it hard not to at times like these. Worrying causes us to speculate about future (probably pessimistic or even dystopic) scenarios and possible outcomes that more than likely unlikely will not come to fruition.

This wasted energy creates a personal environment full of anxiety and creates the hormone Cortisol, which can be damaging to our health. As Brandon Mentore, health coach, says, “Although cortisol can actually help maintain the immune system when released in small doses (or help us keep our wits about us when we really are in danger), it can also hinder the body’s ability to fight off disease, when elevated for long periods of time.

“That’s why those who suffer from chronic stress are more prone to age-related diseases, like heart disease, obesity, osteoporosis, depression and high blood pressure.”

We all know that none of us can control toilet paper or pasta hoarding, or what’s being said on the news, or even how long Covid-19 pandemic might last. However, we can control our own actions.

How to cope with alarmists

Living in a chaotic time, we cannot control how others will react to this new landscape we find ourselves in. But we can take control of our own attitudes. Tuning out the alarmists, the negative, anxiety-inducing news, the conspiracy theorists, helps us continue to live peacefully, even when amongst the chaos.

To relieve anxiety, we need to focus on what we can control

Instead of fretting over the newest fear-packed headlines, could you try one of the following? In doing any of them, you will have taken control of your decisions.

  • turn off the TV
  • disconnect from social media
  • make yourself a hot drink
  • phone a lonely friend
  • listen to some favourite upbeat music
  • making something or gardening
  • do a breathing exercise
  • create a list all the reasons you have to be thankful
  • take a long soak in a bath
  • go for your daily exercise

Please share your own ideas for staying in control when things around you are out of control.

Four letters that make communication REAL

Four letters that make communication REAL

“A diagnosis of dementia for a person is also a diagnosis for the whole family.” 


Dementia can be very hard to come to terms with. Hard enough for the person diagnosed of course, but also hard for family carers, who must watch the relentless deterioration of the person they love, usually over many years, with no hope of reversal. They must also adjust their own behaviours accordingly. In many ways, dementia is a slow, ongoing bereavement process, of loss of a loved one before the person’s death and often means massive and often exhausting changes to the carers’ own lives.

Dementia can be scary and disorientating for the person with the diagnosis, often including

  • short-term (working) memory loss
  • gradual loss of awareness of basic things like eating, drinking and personal hygiene confusion as to their whereabouts or who people are — who they may have known for much of their lives
  • loss of life skills like reading, language and vocabulary
  • rapid mood changes, anxiety, depression
  • depleted motor skills and mobility,

And that’s just for starters.

All these aspects of dementia can be frightening, frustrating and mystifying for the person and saddening (and sometimes maddening) for relatives.

And just when things may seem to have settled into a steadier pattern, the person’s condition may decline further and the care goal posts will move yet again.

Despite this long and pessimistic list — and even though dementia cannot be cured or reversed, our own behaviour can make a big positive difference.

A person can live well with dementia for a long time and with changing attitudes in dementia care, the experience does not have to be unremittingly negative

Happily, in recent years, good communication is slowly being recognised as one of the most important and essential ways of helping the person with dementia and their family to deal with the condition.

I developed the REAL Communication Framework in 2003 as a response to my own observations, worries and concerns about my mother’s condition and her care. The four letters of REAL stand for Reminiscence, Empathic engagement, Active Listening and Life Story. These are the four letters create the four pillars of good communication with a person living with dementia.

Mum had vascular dementia and Alzheimer’s disease for about ten years. I had noticed how her friends gradually fell away, how people were nervous to engage her in conversation or worse, ignored her and spoke through me. I had noticed how impatient my father could be with her sometimes, the woman he adored and had lived with happily for over 60 years — and how all of us in the family felt ‘at sea’ with the experience.

Here is the REAL framework, which surrounds the person with connection and meaningful communication – and all from four letters.

Dad wasn’t coping and Mum found herself in a care home. I noticed that the other residents and their families had some similar issues to our own. I saw that Mum was increasingly challenged to express herself. Of course, the carers knew almost nothing about her and had no tools to help them get to know her better.

First off, I made her a life story album ‘This is My Life’ to help them (and me, as it turned out) to get to know her a better and to give her opportunities to be the expert, in remembering and talking about her life.

Unexpectedly, it became the most important item in her life. Nothing fancy, you understand, just a pictorial chronology of her life with some simple autobiographical captions; for example, “Me in the garden dancing”, “Our honeymoon in Bournemouth”, that sort of thing. We looked at and enjoyed the family photos continually over the seven years she lived in a care home.

I was on a voyage of discovery and she was sharing her experiences as a girl and as a younger woman, — memories I knew very little about, a person who seemed so familiar, yet I hardly knew.

In finding out about her youthful years, we bonded more deeply. This growing closeness helped me to understand better what she might want in the here-and-now. Like all of us, her outlook, needs and expectations had their foundations in her earlier life.

We would watch DVDs together which I knew would make her laugh. In the earlier days we might watch episodes of one of her favourite comedy TV programmes like Dad’s Army. Later, she couldn’t follow the plot lines and even Arthur Lowe’s pompous disdain no longer seemed so funny. Then we moved on to The Marx Brothers.

Nothing like a bit of slapstick for some instant shared hilarity. Her favourites were A Night at the Opera and Duck Soup…

On warm days, we might sit in the care home garden in the sunshine and talk about the birds and bees and flowers and trees and remember her tending the garden at home (mostly endless weeding) and chuckle about Dad in what was his favourite haunt, wearing nearly threadbare gardening clothes.

And while she still could, we talked. About growing up and then bringing up four children, about the hard labour of housework, about life during wartime and dad’s ‘courting’. I admired her endless capable creativity in the house and her delicious cooking. Through sharing her reminiscences and with some empathic, concentrated listening from me, over time, she seemed to be more settled in the confusing, wobbly world she found herself in — and the long list of negatives seemed just a tiny bit shorter.

When these four letters R-E-A-L are in place, anyone can have an easier and more meaningful relationship with a person with dementia and help make it an experience that can be borne more lightly by all.

You can learn more about the REAL Communication Framework and how it helps to transform the lives of people living with dementia and their caregivers here>

How to communicate well with someone living with dementia (Part One)

Photo by Harli Marten on Unsplash


Part One: Beyond the words

“Nonverbal communication forms a social language that is in many ways richer and more fundamental than our words.” 


Leonard Mlodinow

Body and paralanguage always speak louder than the words we use.

When we are alert to these, communication can be more effective, helping us to better understand the main — and also the underlying messages being conveyed.

When talking with a person living with dementia, they are particularly important to understand, for a few reasons. Firstly, the person’s reliance on non-verbal communication may accelerate as their natural language skills become increasingly compromised by the condition. Secondly, their sense of self alters subtly over time. Thirdly, the speed at which the person is able to process and absorb information is reduced. Finally, emotional feelings may rise to the surface (sometimes quite unexpectedly) in situations that challenge them in some way. All these facors contribute to how the person is able to hear, listen and respond.

Approximately 60% of our interactions use non-verbal communication.

These include proxemics (the space between us), kinesics (our body and head movements), hand gestures and posture. Facial expression and eye contact are key, of course. Perhaps crucially, a person’s tone of voice, intonation, pitch and speed of speaking, hesitation noises, gestures and facial expressions, make a significant difference to how we perceive both them and their message. We rely more heavily on this paralanguage to make sense of the world and our experiences than we might realise, or like to admit.

For any person, a diagnosis of dementia can feel like the beginning of the end.

Hardly surprising perhaps, given the prevailing, dismal medical model with which dementia is often viewed: as a journey of emptiness and inexorable physical and mental decline.

This depersonalised stereotyping over-simplifies the experience, presenting a one-dimensional view of personhood, overly dominated by cognition and short-term memory loss. Of course, as the disease progresses, the person’s thoughts and words inevitably become more tangled and confused.

However, a broader (and more humane) definition recognises that a person is far more than their thoughts alone and that together with their many long-term memories and experiences, the essence of the person remains, despite changes to the brain.

To keep well-connected to a person living with the condition, we need to become increasingly attentive to their non-verbal clues — as well as our own. We need to try to be more aware of what we are both communicating, beyond the words.