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 does good communication help the person with dementia? (Part Three)

Part Three: Paralanguage

“They won’t remember what you said, but they will remember how you made them feel” 

Carl W. Buechner

When any of us communicate with a person living with dementia, we will both be using non-verbal ways to communicate beyond the words.

These unconscious methods of exchange: body language and paralanguage, may be overt or subtle, but they are always part of the mix. They help to reinforce what the other person — or we are saying and help us to understand one another better.

Can we cross into the world of the person living with dementia, with all its confines and limitations, rather than expecting them to fit into ours?

Our own reactions may inadvertently add to the person’s lack of mental capacity. I have witnessed many conversations between a person with dementia, a caregiver and another, where the caregiver answers on behalf of the person, or completes their sentences for them — all meant kindly, with no intent to harm, but disabling to the person they care for, nonetheless.


For a person with dementia, feelings are often uppermost. In situations in which they feel fearful, anxious, bored, confused, frustrated, in pain or angry, the feelings of isolation and/or helplessness that the person experiences may find different outlets. The words they then use may not relate to the actual conversation, but instead, include those that reflect familiar, well-rehearsed social norms, or those that transmit their fear, dissatisfaction or frustration at the challenges they are facing.


A person might even swear, despite their normal good manners. They may use paralanguage to communicate their feelings, bypassing words altogether, meaning that petulance, physical force, annoyance or anxiety spill over; or conversely, they may retreat into detachment and passivity.

“The single biggest problem in communication is the illusion that it has taken place.” 

George Bernard Shaw

 Caregivers often develop highly nuanced paralanguage skills with those they care for, in order to stay more in tune with them.

When a caregiver enters into the person’s perceptual world with attentive observation, curiosity and empathy, the effect of and feelings about what is happening matter more than the words spoken. Let’s call this “super-awareness”. This deeper engagement makes it easier to identify, understand, respond to and reduce behavioural expression that has been created by negative, uncomfortable feelings.

Those who listen keenly, observe astutely, mirror accurately and understand thoughtfully, can assist in enabling the paralanguage of a person living with dementia, empowering the person to communicate and participate more effectively and make their lives more meaningful as a result.

We need to understand how challenging it can be for a person living with dementia to understand and relate; and how disempowering it is for the person to be judged from a purely cognitive viewpoint.


The heart of good caregiving means being super-aware and being able to “read the person” accurately. To do this well, we need to be present, listen not only with our ears but also with our eyes and nose. Above all perhaps, we need to listen with an openness to hear beyond the words the person is saying. It is only then that we become thoughtful enablers for them, to nourish and enrich their lives.

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.

Making personal choices

This helpful infographic has been doing the rounds on social media recently. We’re not sure who to thank or credit for its origination, but we found it on the Canadian Mantech site.