Living with loss and grief in a care home

Photo by Fabrice Villard on Unsplash

Part I – A time for a bit of extra support?

Anyone working in the care sector may all 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 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 (see here) . We feel the loss of how things used to be in our care home and may feel powerless to change it.

Many more of the women and men who are residents in the care home 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 (see here)

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.

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

Photo by Arno Smit on Unsplash

Part II – 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.

Breathe

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 

The art and science of communication

How we communicate is more important than what 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 face masks 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 face masks 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 masks 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 face masks, 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 face mask, 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.”

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.

Pillow Talk

This touching moment of kindness, reported in the Lancashire Post has gone viral…

Play Video

PILLOW TALK FOR A CARE HOME RESIDENT

Second World War veteran Ken Benbow, 94, was overcome with emotion as he was filmed by staff at Thistleton Lodge Care Home in Preston, as teenage carer Kia Mariah Tobin, gave him this touching gift of a cushion featuring a picture of his late wife, ‘beautiful, caring wife Ada’. a sentimental cushion featuring a picture of his late wife. The couple were married for 75 years before her death last year.

Kia, 17, from Blackpool, who has moved into the home to assist during the pandemic, was inspired to order this very special gift after noticing Ken would take a framed photo of Ada to bed each night. She said: “He would take this picture in a metal and glass frame off the wall every night. Knowing how important it was, I just thought there has to be a better and more comfortable way.”

She and the staff had no idea how far reaching the special moment would travel and just wanted to record the presentation as a heart-warming memory for Ken and the staff to remember this time.
“It was just an idea I had to do something comforting for Ken and when I brought it in and showed the team, my manager suggested we should record his reaction.

“Ken is fantastic, so wonderful, he speaks so much of Ada and how much he loved her, – in a strange way I know her without having ever met her just from the way he talks of her. He’s a real character and it’s the people I’ve met that have made this job so rewarding for me. It was my own grandma who suggested I give it a go.”

Ken, from Garstang, was just 17 himself when he joined the Navy. His service saw him take part in most of the important theatres of war including D-Day and in the Pacific for the preparations for the invasion of Japan, just before the US dropped the atomic bomb which ended the war. He left the Navy in 1946 and was awarded the Légion d’Honneur by the French Government in 2016.

He met Ada while out dancing, just one week after he moved to Liverpool – “I can still see that post she was leaning against with her friends.” The couple courted for two months before making plans to get married. He described proposing to Ada at a dance, adding: “We were always dancing. I used to fling her over my shoulder and we would jitterbug. It was lovely! She was the most caring, beautiful wife anyone could ever wish to have. She never did a thing wrong in her whole life.”

Kia added she hoped the attention from the video would help to put a spotlight on the role of carers during the pandemic and the work behind the scenes to keep the vulnerable safe. She said: “The NHS are amazing in what they are doing but we know so many carers and home care workers who are too doing their bit working every day to go place to place to make sure people are protected and looked after.

“It’s not an easy time and that needs to be recognised. Care homes are dealing with this too and the support is vital.”

 

If you would like to do the same thing for a friend, you can do it here:

Shaw Healthcare virtual choir brings the community together

We’ll meet again. Let’s hope.

Seldom have the lyrics to Vera Lynn’s song felt quite so poignant.

Last week, care home operator Shaw Healthcare hosted a virtual choir to lift the spirits of their residents and staff.

The company, which operates 75 homes across the UK, organised the online sing-along to cheer people living and working in them, in the current COVID-19 pandemic.

Residents and staff joined together to sing, “We’ll Meet Again” together across England, Scotland and Wales, delivering a message of hope and positivity.

See the Shaw healthcare virtual choir sing ‘We’ll Meet Again’ >here

 ‘We’ll meet again’ – residents of Castle View Windsor sing out loud and strong.

Keeping their spirits high in the current situation and spreading a little joy and happiness, the residents of the new Castle View retirement village in Windsor have taken to their balconies to sing and exercise together, while maintaining a safe social distance from one another.

You can read the full Care Industry News article >here

Delivering goodies and happiness to isolated older people during lockdown

Unsung Heroes in Norfolk: Sally Whitworth 

Here is Sally Whitworth with her beloved labrador, Pongo. She is one of our fantastic ReEngage tea hosts for the area, as well as a regular monthly driver. Since lockdown, we have been unable to hold teas, but that hasn’t stopped her generosity… Here yet another delivery of delicious Bake Off!-worthy, homemade cakes (this week it was banana loaf and lemon drizzle) await in the basket.

All the oldest old in our small community have received two slices of mouth-watering cake every week, delivered with great affection and boundless cheerfulness by Sally. No mean feat, as there are nearly twenty people on her list. She has been doing this since lockdown on 24 March, maintaining the Government’s Covid19 rules scrupulously, with gloves and a garden stake which doubles up to hang the basket, while providing appropriate social distance.

Then at Easter, she delivered bags of Easter eggs to everyone, with a personal hand-written label on each, written by her 5 and 7 year-old great niece and nephew.

“I really enjoy doing it”, she says, “– and it stops me eating them all! Mind you, Pongo would have the lot, given half a chance.”

Four letters that make communicating with a person with dementia more real

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

Anon

It can certainly be very hard to come to terms with. Hard enough for the person diagnosed of course, but hard for family carers too, who must watch the deterioration of the person they love, usually over many years, without any hope of reversal and 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, 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 know for much of their lives; loss of life skills like reading, language and vocabulary; rapid mood changes, anxiety, depression; depleted motor skills and mobility, to name but a few.

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 seem to have settled into a more steady pattern, the person’s condition may decline further and the care goal posts 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 irretrievably 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 mum’s condition and her care. She 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. 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.

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 she was increasingly challenged to express herself. Of course, the carers knew almost nothing about her and had almost no tools to help them get to know her better.

First off, I made her a life story album to help the carers (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 watched DVDs together that I knew would make her laugh. In the earlier days we might watch episodes of one of her favourite comedy TV programmes, Dad’s Army. Later, she couldn’t follow the plot lines and even Arthur Lowe’s pomposity didn’t seem so funny any longer. So 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, trees and flowers 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 REAL things 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.

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

Photo by Nick Fewings on Unsplash

 

Part Two: Words aren’t everything

The Language of Dementia

Unfortunately, speech and language deterioration is almost inevitable for a person living with dementia. The reasons are multifarious — among others, the person’s natural language and vocabulary are increasingly challenged by reduced mental capacity. Reduced brain-processing power means that they may struggle to understand what is being said to them. Loss of short-term memory makes it harder for them to orientate themselves in a narrative, or in conversation. They may be unable to respond at we would consider to be a ‘normal’ speed. They might return to using another language learnt in their childhood.

But words aren’t everything

We can communicate better with a person living with dementia by using overt and subtle, non-verbal language that conveys meaning beyond the words — especially if it mirrors theirs. Mirroring non-verbal cues helps to give clarity to our engagement, making it easier for us to understand one another.

Over the years, I’ve heard a number of stories of people living with dementia who have become newly attached, or antagonistic to another person because the person reminds them of a family member or friend they once liked or someone they disliked. It is often something in the tone of the person’s voice that has created this attraction or repulsion.

And it is not just what we say, but how we say it — our tone of voice.

Tone of voice matters, because it helps us to express the feelings behind the words we use, and may reflect among other things, our social culture, where we come from, our age, social status, education and command of language, our sense of ourselves, our attitudes, our state of health and our current mood. The timbre of our voice may help or hinder our connection with someone, even if we may be hardly, if ever, conscious of it.

Over the years, I’ve heard a number of stories of people living with dementia who have become newly attached, or antagonistic to another person because the person reminds them of a family member or friend they once liked or someone they disliked. It is often something in the tone of the person’s voice that has created this attraction or repulsion.

What are the ingredients that make up tone of voice?

These include natural vocal musicality, pitch, depth and intensity, the clarity and sound of our words, the accentuation we use, the speed at which we speak and more generally, the personality and outlook we convey by these means.

Even the simplest of questions, such as “How are you today, John?” may be imbued with a range of meanings depending on the tone of voice used, from genuine authenticity to patronisation, from positivity or cheeriness, to sadness or negativity. How many underlying meanings are you able to convey, just by changing your tone of voice and accentuation in the sample question?

Being more aware of how we sound can help improve our relationships with everyone

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.