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.
Chatterbox groups
Chatterbox Groups
Being listened to matters. People living in care homes need meaningful conversation every much as do we who live independently – it’s part of our wellbeing.
In a care setting, if a person’s dementia is advanced, staff may struggle to engage with them. Few carers have any training in meaningful conversation – added to which, their ages, life experiences and possibly social cultures may be very different.
According to a study by Washington University in St. Louis and the University of Arizona, outgoing, gregarious people who have deep, meaningful conversations also have happier lives. People who spend less time alone and more time talking with others have a greater sense of personal well-being, suggests the study, published in the journal of the Association for Psychological Science. Co-author Simine Vazire PhD, assistant Professor of Psychology in Arts & Sciences at Washington University says, “having more conversation appears to be associated with a greater sense of happiness among the people in the study.” The happiest were those who engaged often in more meaningful and substantive discussions, as opposed to idle chit-chat and small talk.
This finding is also true of people living with dementia. When we value people’s histories, co-incidentally, we help give them a kind of meaningful future. If we fail to listen to their rich life experiences, we fail to value them. Stories of learning how to make do, mend and keep your chin up in challenging times are as relevant now as they ever were. It can be oddly comforting for us to hear the experiences of a person who has ‘come through’ with a longer perspective on life.
Since 2015, it’s been a privilege to facilitate regular conversation groups with residents at a London care home, based on the principles of REAL Communication (Reminiscence, Empathic engagement, Active listening and Life story) and the Chatterbox cards. The sessions last for about an hour each and take place twice a month. Four or five residents with advanced dementia attend the first group and about ten people with cognitive impairment but whose communication skills are still relatively intact come along to the second one.
A four-month trial proved so successful that they have continued ever since. The stories people have shared have helped us to map their life stories in a way that a more formal assessment simply cannot. Our thoughts, experiences and memories rarely follow a chronological path. In capturing them as they are sprinkled throughout the sessions, we have been able to build a more complete – and interesting picture of each person. This has then been translated into more focussed care.
Chatterbox Groups
Since 2015, it’s been a privilege to facilitate regular conversation groups with residents at a London care home, based on the principles of REAL Communication (Reminiscence, Empathic engagement, Active listening and Life story) and the Chatterbox cards. The sessions last for about an hour each and take place twice a month. Four or five residents with advanced dementia attend the first group and about ten people with cognitive impairment but whose communication skills are still relatively intact come along to the second one.
A four-month trial proved so successful that they have continued ever since. The stories people have shared have helped us to map their life stories in a way that a more formal assessment simply cannot. Our thoughts, experiences and memories rarely follow a chronological path. In capturing them as they are sprinkled throughout the sessions, we have been able to build a more complete – and interesting picture of each person. This has then been translated into more focussed care.
A wedding dress to remember
Meaningful conversation
Meaningful conversation is what many, if not most residents in care homes ache for. I am lucky to have facilitated a regular fortnightly conversation group of people in their 80s and 90s, living with dementia at one care home for nearly ten years. A handful of us sit together in a small group on our own in the lounge.
Some might advise against asking questions of people living with advanced dementia and I have some sympathy with this. People with dementia can find questions debilitating. So often, they refer to the recent past – or future, which negatively challenges a person’s damaged short-term memory. Questions like “how was breakfast?”, “what did you do today?” and so on, pretty much guarantee failure.
My mum had Alzheimer’s disease and vascular dementia. I often found myself intuitively ‘burbling’ at the start of conversations with her, as I have with the many of the lovely older people I’ve known over the last thirty years, whether they have dementia or not. It was my conversations with mum about her long-term memories that prompted me to develop Many Happy Returns cards and the REAL Communication framework.
Burbling and Seeding
Our conversation sessions always begin with settling in. I might talk about a few (positive) things I have on my mind for one reason or other. These may spawn a small selection of ideas that I then ‘seed’ for possible conversation. Once we’ve started, some questions can be helpful; as long as they are about the deep past and help to tap into the person’s long-term experiences, making them the expert.
At one session a few years ago, we were joined by N, a resident I hadn’t met before. Her carer took me aside to explain that N was in her nineties and had advanced dementia. “She might not be able to join in, but we think she might enjoy being with you and listening.” N looked distracted and tired. I wondered whether she would – or could join in, I knew nothing about her, but hoped she might enjoy the experience, nonetheless.
We started as we always do, sharing our names and our state of wellbeing. Seeding a few linked conversational notions for people to consider, I picked the ‘Make Do and Mend’ card from the 1940s set and what it meant to me.
“I was thinking about sewing baskets today. My mum’s wicker basket sat by her chair in the living room. It was full of colourful ‘Dewhurst Sylko’ reels and darning wool. There was a needle case with ‘Needles’, helpfully printed on the cover in case you’d forgotten… I remember a round shallow re-purposed Pascall Fruit Bonbons tin of pins, with its familiar rattling sound when opened. The lid was stiff and if you weren’t careful it would burst open, spilling pins all over the floor – with my mother frantically shooing the dog away. There was a little pair of scissors shaped like a stork and another, large heavier pair with long blades for cutting-out, as well as saw-toothed, ‘pinking shears’. There was a wooden darning mushroom, often in use… and always a few stray items short of a proper home, like buttons, cards of hooks and eyes and poppers. Sewing by hand… everyone used to do it, didn’t they…?”
And then, “I expect you all learned to sew and knit, did you? Perhaps it’s a shame we don’t do these things so much now…”
The Dress
Far from only being able to listen, N was the first to speak. To the astonishment of us all – and the complete disbelief of a few, she said, quite nonchalantly, “I was a seamstress and made Princess Marina’s wedding dress!” “WOW!” I exclaimed, feeling deep admiration and “How fantastic…!” and “Could you possibly tell us about it?”
Not so much a question as a suggestion. I could see and hear that she was really engaged and feeling more confident. A conversation with a person with advanced dementia can be like approaching a sensitive creature in the wild… move too fast and they might run away frightened, move too slowly and they might freeze. If we moved cautiously, might she share more?
N continued slowly, completely absorbed in her memory, “It was very simple and elegant, with a 17-foot train… quite understated really…” (see picture) she continued, with her own masterful understatement.
“Were you the only person to make it or was there a team?” I asked, working hard to keep a lid on my excitement. Long-forgotten fashion industry memories of my own popped up uninvited.
“Oh yes”, she continued, “there were five of us. There were two wedding dresses made, from specially woven white silk and real silver thread. It was fine, but very heavy.”
She went on to tell us about her job, the dress, its design by the couturier Molyneux; how an identical second dress was made in Paris by Russian refugees, “so that the unworn one could be exhibited at Buckingham Palace,” describing her team’s disappointment that in the end, it was the French dress that Princess Marina wore on the day – 29th November 1934, because of her special relationship with the people who made it.
N described in detail how the seamstresses sewed the hem in tiny sections, gesticulating the movement of the needle, thread and fabric, “we’d caste on, sew five stitches, and then caste off again,” so that if the heel of the bride’s shoe accidentally caught in it, “they were very high”, the whole hem wouldn’t unravel. N might have advanced dementia, but who would have known?
Stretching the conversation
Initially, there was general disbelief from one of our group, “don’t be ridiculous, of course she didn’t do that,” said another of our group dismissively, forgetting her usual good manners. “Well, it’s such an interesting story – perhaps we can talk about wedding dresses some more?” I replied, walking a bit of a tightrope between being tactful and not disagreeing.
And of course, as the conversation developed, everyone in the group joined in, sharing distant memories of their own wedding outfits and wedding bouquets and stories of more recent Royals, of Russian refugees and Princess Marina’s relationship with them, of jobs abroad, of late autumn weddings.
Finally, N told us that the English-made dress was the only one to survive, as the other was destroyed by a fire at Princess Marina’s home.
Ours was a happy group that day, as so often – the smiles, laughter and engagement proved that. “Thank you so much”, said one of the participants, afterwards, “I love these sessions”, “well thank YOU”, I replied, “it’s always a pleasure for me, too.” I really meant it.
Communication Masterclass
SCIE and REAL Communication Masterclass
SCIE (Social Care Institute for Excellence) is running a Communication Masterclass, a customised Real Communication Workshop program.
This is an open course for dementia care practitioners that focuses on how to communicate more effectively with a person living with dementia.
The interactive workshop includes exercises, games, discussion and reflection in an open studio environment. The workshop techniques are designed to make it easier for professional carers to positively contribute to the quality of life of those they care for.
This is also CPD-accredited course will give you a range of easy-to-use and effective dementia communication strategies and techniques.
Content includes:
- Techniques to establish trust and safety to support the person and their family.
- How the brain’s different memory systems function
- REAL communication framework and techniques: reminiscence, empathic engagement, active listening, life story.
- REAL approaches to working with family carers and friends to deliver a better quality of life for all.
- REAL communication techniques for mapping a person’s life story
- Adjusting REAL communication techniques to a person’s needs as their dementia advances
- Understanding how feelings are at the root of communication challenges
- Strategies for self-care.
Learning outcomes
Participants will learn:
- the deeper principles of communication that make care more meaningful
- how to provide more relevant support to an individual living with dementia at home or in a care setting
- how to connect more effectively with families and/or the person’s advocates
- how to deliver better care through improved understanding and communication
The REAL framework is based on evidence gathered over a decade working with people living with dementia and their carers. Research showed that reminiscence, empathic engagement, active listening and life story are key to the wellbeing of any older person living with dementia.
When accompanied by the Senses Framework (My Home Life example here), everyone’s lives improve.
You can also learn more about SCIE’s Dementia training courses for health and care in collaboration with REAL Communication Works here