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.” 


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.

Developing Dementia

Ten signs of dementia and ten questions you could ask yourself

Anyone might develop dementia.
Here are ten questions you could ask yourself:
1. – Are the changes you have observed in the person new?
2. – How long has the person had the symptoms?
3. – Could they normally manage their household and self-care before?
4. – Are their normal personal routines still in place?
5. – Are they forgetting appointments – or medications?
6. – Are they able to make and keep work appointments or social arrangements?
7. – Do they ever get confused as to their whereabouts?
8. – Have you noticed any differences in their dress or behaviour?
9. – Do they seem to be less motivated?
10. – Does the person seem distracted, or vague? 
If you suspect that the person has some cognitive impairment that might lead to dementia, you might consider:
• An MMSE and/or additional cognitive tests
• Reviewing the person’s medication
• Considering referring the person for neuropsychological testing or a geriatric assessment
• Assess other reversible causes/factors of memory loss: CMP, CBC, thyroid function tests, vitamin B12 & folate
• Asking the doctor to arrange an MRI scan.
Thank you to Unsplash and Evan-Dennis for the image.

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

On 31 October SCIE (Social Care Institute for Excellence) is running another REAL Communication workshop – 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. 

The REAL framework is based on evidence I gathered over a decade working with people living with dementia and their carers, that 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, everyone’s lives improve. You can read more about it here

Our favourite toys 20:

Smiley and Mrs Pussy

Smiley is seen here with Mrs Pussy after more than 40 years of love, tears and secrets. He’s wearing the jumper and trousers of my mother’s teddy, “Edward Bear” and was a present from my Granny, bought with Green Shield stamps (my grandparents were very hard up) for my sixth Christmas present.

Mrs Pussy, although a better class of teddy, didn’t hold the same appeal, though she has washed her skirt for the photo and the pair of them have planned their retirement by the sea.

Many thanks to Fi Howard, textile designer,

I loved him more than anything else and would have risked my life for him. He was there for me when I was homesick away at school, when I was ill, needed someone to talk to, or just someone to snuggle up to every night.