Hilary Woodhead Tuesday Afternoon Tea with Danuta Lipinska

Hilary Woodhead Tuesday Afternoon Tea with Danuta Lipinska - Sex is an activity too!

In her compassionate book, Dementia, Sex and Wellbeing, our wonderful colleague Danuta Lipinska shows that the human need for intimacy, attachment and sexual expression can be just as important for supporting the wellbeing and personhood of a person with dementia as communication and care. 
 
She examines the cognitive changes that occur in dementia and what they mean in the context of sexual behaviour and consent. Taking Carl Rogers’ Core Conditions and Tom Kitwood’s psychological needs of persons living with dementia as a starting point, Lipinska offers a unique model for person-centred conversations about sex and sexuality. 
 
In this fascinating Zoom webinar, she discusses the issues with Hilary Woodhead, Executive Director of NAPA (National Activity Providers Association) over a nice cup of tea. As she says, despite sexuality, sex and intimacy being integral parts of all our identities, they might still be considered to be the Last Taboo in dementia care, so often seen as ‘problem behaviours’ to be stopped and dealt with. Essential viewing for anyone working with people living with dementia.

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.

Zoe Harris – Introduces ‘My Future Care Handbook’ in an interview with Sarah Reed

Zoe Harris - Introduces 'My Future Care Handbook' in an interview with Sarah Reed

Zoe Harris has created the My Future Care Handbook. With over 60 pages packed with information, with links to further online resources.

Its the perfect one-stop shop for all things related to later life and beyond, from compiling a bucket list to writing a Will, from creating a music play list to considering how you might want to live and/or be cared for if you need support, and much, much more.

Here’s what some people have said about the Handbook..

“I can’t recommend this strongly enough. Whether for an ageing relative or for your own information, education and action, it cuts through red tape to focus on decisions you might want made on your behalf if/when you can’t.” Neville

 “This is a really great resource. Accessible and simple to follow with some important wins just by working through the book. We loved it.” Philip

“The Handbook is literally a one-stop-shop for anything and everything future care related. What makes this resource particularly useful is how accessible it is. It takes what is a really tough topic and makes it as easy to address as it’s ever going to be.” Beth

With thanks to Zoe Harris

Zoe Harris

Specialist in improving people’s experience of care. Founder/creator, Care Charts UK, Mycarematters and My Future Care Handbook. HSJ Innovator and Nesta Radical 2014.

Queens Court Care Home under lockdown

Queens Court Care Home under lockdown

Interview with Shaaron, 18  May 2020

Shaaron Caratella is our care home specialist advisor to REAL Communication Works.

Originally an RGN nurse in the NHS, she went on to gain a BSc in Nursing Studies, a Diploma in Orthopaedics and an MSc in Health Sciences. Her passion for the good care of older people shines out of her and she has been the Manager of Barchester Queens Court Care Home for 23 years, what she doesn’t know about nursing home care, is hardly worth knowing.

Queens Court locked down early in March and this means that my fortnightly conversation group with residents, which has been going for about a decade, also had to be temporarily suspended. I really miss the lovely residents in my Sarah’s Chats group, but have stayed in touch with them with intermittent postcards from the coast. Reassuringly, one of our group has even taken up occasional correspondence with me!

Last week, Shaaron and I had a phone conversation, as I was keen to hear how she and everyone else is coping. She sounded comparatively cheerful, given the circumstances, which pose so many challenges….

“The staff have been really shell-shocked. We have lost some staff through natural wastage – one of our full-time staff left to work at a different care home early on in the Lockdown. Only the really brave care workers were coming in for about the first month and I was very concerned about the psychological state of the staff – we were all very sad.

‘We had to implement special protocols for infection control from day one’.

And then there are the reports… the endless reports. Everyone wants reports, Public Health England, Merton Council, the CQC, the London Capacity Tracker. Everybody wants it written down, which means a lot of extra work.

The laundry has been really challenging, because nothing can be worn or used more than once without fastidious cleaning, so the washing machines have been very busy and our maintenance man has been living from moment to moment to ensure that everything keeps running. He has never had to work so hard.

Barchester Healthcare has been really good and has really invested in the care staff. They had a strategic plan by mid-March. We do a daily Covid update with all manner of detail, including infection control and deep cleaning, right down to meeting and greeting.

Every Monday, we do a thank you for the care staff that comes straight down from the (Dr) Pete Calveley, ourChief Executive and the reviews have been very useful. There is been a lot of good feelings towards care homes and we have been celebrating the kindness. We are trying to be mutually supportive. There is a huge amount of respect for the staff and a huge amount of responsibility for them, too. But they understand it. They get it. Right from the early days, the staff and residents have been very supportive to each other, even though the first two months were a baptism of fire – it was relentless.

The situation with families has been very challenging. Although they have been able to Skype or phone, the lack of visitors is really a problem in the care area. Of course, their new isolation means that a few of the residents have become quite depressed, but we’re doing our best to keep them connected to their families and to one another. Our good relationship with families has paid off. We are on first name terms with them now in a way that we never were before. There is a huge amount of trust and our team knows that, so we try even harder to be there all the time for our residents.

As far as health matters in the home are concerned, we are proud that the results of Whole Home Testing showed that we are Covid negative. Residents have had some hearing aid issues and some have needed to be seen by the optician – it’s good that our GP visits all dressed in PPE. It’s been very good for the team to use all their skills including hairdressing. Since it’s been warmer, the residents have been socially distancing in the garden and having ice cream and doing a quiz or just taking in the sun.

 

‘There’s been a lot of kindness and we all laugh and giggle together. Of course, you feel absolutely exhausted at the end of the day, but there’s nothing like a glass of wine to cheer you up’!

Hospitals aren’t discharging residents to some care homes – they are only using contract beds, even in this time of Covid. Of course, hospital staff don’t have time to develop the deeper relationships with the residents the way that we do. Sadly, they can forget – and lack respect for, the great age and needs of these special older people in our small community.

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.

Meaningful conversation is one key to happiness

Talking makes people happy.

When my mother was in the care homes she lived in for the last seven years of her life, I was keen to ensure that she was engaged in meaningful conversation by carers as much as possible, so that when the family could not be there, she felt stimulated and happy.

She had dementia and I observed was that the more advanced her dementia became, the less staff were likely to engage in conversation with her. Often this was because the younger carers had no training in how to start or maintain a meaningful conversation with a person living with more advanced dementia – and of course, their life experiences were so different. It was this observation that largely prompted me to develop Many Happy Returns conversation trigger cards and REAL Communication workshops.

The workshops focus on a range of communication issues, including overt and unspoken language, body language, voice, tone and inflection, the complexities of memory and how it works, compassion and empathic engagement, why listening is so important to us all and how to do it better and the vital importance of a person’s life story and why it matters quite so much to any older person with dementia as well as those caring for them.

Self-care is part of communicating with oneself and more awareness of this and of self can help reduce the well-documented incidences of professional and unpaid carers’ burn-out.

As far as I know, there are no other conversation trigger cards like ours, which include carefully researched images from social culture with contextual background information and conversational prompts. Our REAL Communication workshops are unique. Both are based on research evidence. The following research results contribute to our work.
According to research from Washington University in St. Louis and the University of Arizona, outgoing, gregarious people who fill their lives with deep, meaningful conversations are lucky to have one of the keys to a happier life.


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.

 

“Having more conversation, no matter how trivial, appears to be associated with a greater sense of happiness among the people in the study,” 

“Having more conversation, no matter how trivial, appears to be associated with a greater sense of happiness among the people in the study,” co-author Simine Vazire, PhD, assistant professor of psychology in Arts & Sciences at Washington University.However, the happiest people were those who often engaged in more meaningful and substantive discussions, as opposed to idle chit-chat and small talk.

Based on the conversation patterns of 79 college-aged men and women was tracked over a four-day period, the study was conducted by Vazire and three colleagues at the University of Arizona.

Using an unobtrusive recording device that participants carried in a pocket or purse, researchers taped 30 seconds of sound every 12.5 minutes, amassing more than 20,000 audio snippets of sound from the daily lives of participants.

Members of the research team listened to the recordings and coded the number of conversations each participant had, and whether each conversation was substantive or small talk. Each participant’s happiness level was scored using standard psychological tools for gauging personality and wellbeing, including self-assessments and reports from friends.

Participants scored as “happiest” in the study spent about 25 per cent less time alone and 70 per cent more time talking to others, as compared with the unhappiest participants. The happiest participants had twice as many substantive conversations and one third as much small talk as the unhappiest participants.

“Overall, these findings suggest that meaningful interactions with others are important for wellbeing,” Vazire concludes.

“However, our research cannot determine whether meaningful interactions cause happiness, whether happiness causes people to have more meaningful conversations, or whether there is another explanation. We believe it’s likely that both are true – that happiness leads to more meaningful connections with others, which then produce more happiness – but this remains to be tested in future research.”

When we feel valued and appreciated, our sense of self improves and we are more likely to value and appreciate others more and in turn, this encourages them to value and appreciate us more. Nowhere is this ‘virtuous circle’ of value and appreciation more true and more obvious, than in care homes.
To conclude, meaningful conversations need inspiration.

When we inspire a person we are speaking with, we create a welcoming space in which they are encouraged to share, (but not required to). This gives them more freedom in how they respond. If you ask, “How was your weekend?” (an invitation), the person can only respond by answering your question.

Instead, if you share a story from an event you experienced at the weekend that may be relevant to the other person (an inspiration), then they can choose how they respond. It’s up to them. And that means it’s not up to you.

Weaving inspiration into our conversations frees us from the responsibility of knowing what to say next. Inspiration encourages us and the other person to ‘co-create’ a conversation together.

All we need is to be genuine in what we share, and share it in a way that encourages others to share as well.

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.

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

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

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