This has allowed George to build a special and significant relationships with people living and working in the homes over several years and to take a flexible, creative and personal approach to bringing music into the home. His role goes far beyond that of an ‘entertainer’. It is much less about performing at the front of a room and far more about being a friend with a guitar, spending meaningful time together.

Wouldn’t it be wonderful if more care providers considered making this vital investment in music in care homes and hospitals?

This is George’s story of how it came about and what the work means to him.

‘Ah, my nan’s care home had live music — she loved it!’
‘Music always brought Dad out of himself.’
‘That must be a really rewarding job.’

These are the kinds of responses I repeatedly get when I tell people I play live music in care homes. But whilst I’ve managed to carve out something vaguely akin to a career in the performing arts, I haven’t always felt quite the same sense of pride and purpose when explaining what it is I do for a living.

Over three decades I have been a jobbing actor, a vocalist, a music creator, a theatre maker. Time and again I’ve seen people’s eyes light up when they ask what it is I do.

‘Ooh, an actor — have I seen you in anything?’
‘A musician — are you famous?’

Sometimes a conversation is sparked. Most of the time, those same eyes quickly dim and wander as I attempt to explain the ad hoc affair that it can be making a living as a performer. And quite rightly so. It is, for the most part, not glamorous and, furthermore, a notoriously precarious occupation. That precarity is intensified by it being a vocation — a way of being where identity and income are all tied up together.

Cut to Brighton in the early 2000s. The London-on-sea party destination was not just my home but also a hotbed of opportunity for a nascent professional musician. I dived straight in. It wasn’t long before I was doing several gigs a week — sometimes two a night. But a few years down the line, I discovered, to my dismay, that fronting bands and singing at corporate events and private functions — whilst providing me with an income — was making me quite unhappy.

I stepped away from it all, certain that fulfilment was to be found in more ‘discerning’ areas of the industry. It would be another decade or two before I discovered it was the context, not the content, that was causing my existential crisis.

Fast forward to early summer 2022. I found myself on another day of job hunting, having a stilted conversation with a busy administrator at a one of the homes belonging to the Southern Healthcare group.

‘Musician in Residence job? Sorry, don’t know anything about it.’
‘It’s been posted today on Indeed,’ I proffered eagerly.

In my haste to be considered for the role, I was evidently bypassing the correct application process. I soon came to learn that my enthusiasm was almost on a par with the job post’s author. The lack of knowledge of such a vacancy was because such a position did not currently exist at the time — except in the vision of the managing director with a passion for live music.

I got the job. Or at least I thought I had.

I met with Geoffrey Cox, MD of Southern Healthcare. He explained how he wanted to expand the provision of live music across the homes. It was the tail end of the pandemic. Whilst there had been some return to normality, there was still significant disparity in the delivery of activities. What he was envisioning sounded like an innovative approach. I was chuffed to bits.

A few days later — some hesitation. There’d been pushback from concerned staff. A musician on the payroll? In-house, across all four homes?  How would that be co-ordinated?

“Surely there are more essential assets to be procured before some minstrel starts wandering willy-nilly around the place, Mr Cox? Someone to drive the minibus, for a start?”

Valid points indeed, but not in tune with this vision.

Luckily for me, such was the maverick spirit and boundless enthusiasm of Mr Cox that a trial period was agreed upon. This luck continued as probationary weeks turned into months, and months rolled into years. Rock and roll!

I must say I did go into it armed and prepared. I had an extensive, varied repertoire from all those years on the circuit. I had a clear vision of how I wanted to present myself. All that busking and immersive theatre had shown me I could engage without the need to plug anything in. And when you are free of such restrictions, you also have an additional instrument at your disposal — your own body.

Measuring success moment by moment

But stepping back, what is the hard evidence on the effectiveness of live music for wellbeing? What measurements can be used to determine effectiveness? Where is the solid data that will reassure stakeholders — namely residents and their families — that they are receiving value for money when that singer and his dog come tumbling yet again into the lounge?

I know it won’t win over all economists, but here are some examples of what I have witnessed time and again when we rock up:

June’s* soulful singing and sharp-as-a-tack comebacks.
Alice’s* elegant footwork and raised eyebrows.
Julia’s* all-in dancing and all-out teasing.
Harriet’s* measured tapping and withering looks.
Fred’s* rattling — both his tambourine playing and his leg-pulling of yours truly.

Over four years and, in both character and geography, across four distinctly different homes, I have experienced on a regular basis the magic that happens when you can provide a song, a beat and a bit of banter.

Making things personal

Making weekly visits means I get to personalise sessions and really know people. I learn that Sally* will suddenly become animated at the opening line of Don’t Fence Me In. I remember that Somewhere Over the Rainbow will make Belinda* tearful (in a nice way); that Dedicated Follower of Fashion will make Fred’s eyes sparkle, eliciting memories of sauntering through Soho in the 60s.

Quite often, I will improvise, including suggestions and contributions from people in the moment, which brings that extra sense of feeling heard and included. It means I can adapt my set, my delivery and even my whereabouts depending on who is present — in the lounge, the garden or their own room. And of course, that’s not just residents but, importantly, team members and visitors alike.

This all leads me back to my ‘gigging days’. It was the context. Being up on stage, surrounded by speakers, stands and cables, made me feel detached — from audiences, even from my fellow musicians. What I craved was a return to the environment where I first started singing and playing: a living room populated by friends and family. A space where removing the pressure to perform allows the music to be heard, where thoughts can be aired and ideas bounced around.  It’s truly personal.

An unexpected double act

Ah, talking of bouncing — there is a being I’ve only briefly mentioned thus far. My dotty collie-springer cross, Dotty, is my co-performer. What started as a one-off necessity became an absolute fixture. And she, of course, brings her own brand of connection.

Unsurprisingly, she is ball-mad. And as far as Dotty is concerned, where there are people, there are ball-throwers. Drop into the mix a job lot of repurposed litter-picker grabbers and it’s not just songs and chats being thrown about the place.

So yes, these days I feel pride and purpose when I tell strangers what it is I do. And I am forever honoured and humbled by the people and communities in whose homes I get to hang out — throwing out energy and seeing what comes back. Give me that any day over some polite yet disengaged round of applause.

So, with that in mind, it is only right that I leave the last word to Nick* — a true hero and a true heckler.

I met Nick at in one of the homes early on in my employment. He was someone who was very much not going to let himself be defined by a condition — a defier of self-pity. He was also an expert in the well-executed insult. He made me laugh.

When I tentatively invited requests, Nick would shout song titles suggesting I should pack up my troubles and go forth and multiply. If I attempted a bit of nice-guy chat, he’d tell me to “shaddap your face” and get on with it.

“Go home!” he’d say with a beaming smile.

It was then that I realised that, in this job, I have done just that.

George Williams

*names have been changed

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What I encountered was both what I thought I knew and everything I didn’t. It was both heartwarming and unsettling all at once. Full of moments that softened me, alongside moments that made me pause not because they were dramatic but because they either reinforced or challenged my notions of what long term care offers. Speaking of notions…it led me to consider that of intention. So much of our lives are built on it.  Early on, we are intentional about the paths we take.

The right schools.
The right careers.
The right relationships.
The right neighbourhoods.

We plan. We optimize. We compare. We measure progress. We make careful, deliberate choices about how life should unfold. Once we’ve done that work for ourselves, we then turn our attention to our children, guiding, nudging, worrying, and hoping our intentions will carry them forward into lives that are safe, meaningful, and full. How often do we apply that same level of intention to the final chapters of our lives and those of our parents? Not just where we will live but how we will be lived with. Not only safety and medical care but the dignity, identity, and belonging that was so important in the earlier years of our lives. Not merely how long we live but how much of ourselves is still allowed to exist within that living.

Walking into a long-term care home creates a quiet reckoning. It interrupts the idea that life is always about momentum and achievement. Instead, it poses a different question and it is one that has nothing to do with progress and everything to do with humanity: What does intention look like when the goal is no longer growth, but presence?

This is where my understanding deepened and this is also where the Butterfly Methodology matters so profoundly. The Butterfly Approach is, at its core, an intentional philosophy of care. It challenges the assumption that care must be clinical, task-driven, and impersonal. It asks us to shift our focus from routines and structures to relationships, from systems to people and  from control to connection. It is intentional about slowing down and noticing who we are with and how we are with them and intentionally adapting the environment to people, rather than forcing people to adapt to environments. It understands that even when memory fades, personhood does not and that we have to be intentional in our behaviour and our communication because emotion often outlives cognition.  Joy, fear, comfort, and connection are ever present even if words have escaped our memories. 

What struck me most was this: intention doesn’t just shape the experience of residents. It shapes the culture of care itself and is the sustainability we want. Intentionality is not what we say we value.  It is what our environments, routines, and behaviours show us to be true. Many long-term care homes are built with good intentions, but intentions, without alignment, can dissolve into process. What is meant to be compassionate can become transactional and what is designed for care can slip into control.

When intention is lived, truly lived….when it shows up in the day to day hum of the home, we do more than improve outcomes. We make a statement about who matters and who we are choosing to be. Surely the twilight of our lives deserves the same intentionality as the beginning. I definitely thought I knew what to expect from a long-term care home. What I discovered instead was a deeper question: If intention shapes how we live, what does our care at the end of life reveal about how deeply we value life itself, overall?

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The heart of care is human presence. The goal is not to stimulate, entertain, or “keep busy,” but to BE alongside one another, to nurture belonging, identity, and emotional safety. To BE present in the moment. At Christmas, the principle of being together and sharing the experience matters more than ever. After all, isn’t this the true message of Christmas?

Here are some key thoughts for us all to remember this Christmas:

The Season is Felt, Not Remembered. Many people living with dementia or mental health problems may find some memories to be too painful or may not recall past holiday moments clearly. Yet the feeling of Christmas – warmth, belonging and togetherness is still an important part of creating new experiences and memories for people. Let’s remember we meet emotional moments in the present, not memories from the past.

Creating Spaces of Belonging is important for supporting emotional memory to be triggered. During Christmas, small, thoughtful touches can help sustain a sense of warmth and identity:

• Keep decorations simple and familiar.
• Display soft lighting rather than bright, flashing patterns.
• Play gentle, well-known carols rather than fast, festive noise.
• Create cozy corners where someone may simply sit with a warm drink and breathe.

Belonging does not require conversation. It grows through being together. The key to supporting belonging is to embrace the idea of slowing down together. In many health and social care settings, Christmas can accidentally shift toward performance, i.e. large group activities, themed events or parties, and busy calendars. But activity is not always connection. Emotion-focused care gives permission to slow down. To choose quality over quantity.

Christmas is a time to honour identity and story. Every person has a history of how they “used to do Christmas”. Some traditions bring a sense of joy. Some bring grief. Others, peace and comfort. We honour identity by following the emotional cues we see in the people around us, not by insisting on traditions. Connection is not created by doing what we have always done. It is created by doing what feels meaningful now.

As caregivers, whether family, support workers, nurses, companions, or friends, we sometimes think we must make the season joyful. But joy is not something we create. Joy is experienced when people feel safe, seen, respected and emotionally connected.

The most meaningful gift any of us can offer this Christmas is ourselves… our warmth, our attention, our presence.

Christmas does not need to be big to be meaningful. It does not need to be loud to be joyful. It does not need to be remembered to be felt. When we take an emotions first approach, we see that the heart remembers what the mind forgets. So, this Christmas among all the traditions, the busyness, the abundance of food and the presents, let’s celebrate presence over perfection. Let’s prioritise comfort and belonging and make moments that matter.

Happy Christmas.

The post Holding Warmth: Emotion-Focused Care at Christmas appeared first on Meaningful Care Matters.

When something bad happens to someone I know—whether a friend or a family member—I often have the thought, “That’s awful,” and then move on. It might linger for a few days, and I’ll feel empathetic for a moment, but in reality, my life continues as normal.

But what happens when it happens to me? When my life is suddenly thrown into chaos? When my emotions are all over the place, and I find that most people around me just don’t understand? That’s when I realise how different things are when you’re in the midst of the experience, rather than just observing it.

The Long Road to Parenthood

Twenty years ago, my wife and I began trying to start a family. Little did we know, this journey would stretch on for seven years, marked by years of fertility treatments and countless insensitive comments from well-meaning people. If you’ve struggled with infertility, you know the heartache. But if you haven’t, it’s hard to truly understand what it feels like to watch more than 40 babies be born to friends and family while you’re still hoping for just one of your own. Trust me, it’s not something you can truly grasp until it happens to you.

Bankruptcy: A Humbling Reality

Fifteen years ago, I thought of bankruptcy as something reserved for people who were dishonest or irresponsible with money—practically criminals. But following the 2008 financial crisis, we found ourselves over-leveraged in a property development and were forced to file for bankruptcy. Well-meaning people would say things like, “It must be great to be debt-free now,” but the truth was, I felt humiliated. It took years to work through the self-inflicted labels of failure and disappointment. If you’ve experienced crushing failure, you might have a sense of this, but if you haven’t, it’s hard to imagine just how deeply it can affect you.

Kidney Failure: A Personal Struggle

This year, I faced a health crisis that I never anticipated. Just three months after moving from the UK to Australia, I experienced sudden kidney failure. I have a congenital kidney disease, and I’ve watched several family members go on to dialysis or undergo transplants. So, you might think I was prepared for what lay ahead. But here’s the thing—it’s completely different when it happens to you. The endless hospital visits, daily pain, operations, and a life-altering treatment regimen have brought my life to a grinding halt.

Empathy in Practice

Through all of these trials, one thought keeps coming to mind: the reality of experiencing something myself is nothing like watching someone else go through it. As many of us work with individuals living with dementia, we may have witnessed the toll it takes people and their families. But the truth is, none of us can fully grasp what it feels like to live with dementia unless we experience it firsthand.

I remember when we learned that our IVF treatments had been successful. The clinicians were business-like and detached—they see this outcome every day. Likewise, during the bankruptcy process, I realised the judge who declared our bankruptcy wasn’t personally affected by our struggles. It was just another case for him. Similarly, in the hospital over the past few months, I’ve encountered many doctors and specialists, and while their care has been excellent, I know they see patients like me every day.

This repetition, this “clinical detachment,” is common in professions where people face difficult circumstances regularly. But as those of us who care for others, we must be careful not to become numb to the pain and challenges that our patients, residents, or their loved ones are facing.

We have a responsibility to remain empathetic—to truly put ourselves in the shoes of the people we care for, and to never forget the profound impact their struggles have on their lives. Our empathy should be a constant reminder that we can’t truly understand someone else’s pain until we walk a mile in their shoes.

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The UK Health and Social Care Act 2008 states our obligation to deliver care to be person centred.

‘The intention of this regulation is to make sure that people using a service have care or treatment that is personalised specifically for them. This regulation describes the action that providers must take to make sure that each person receives appropriate person-centred care and treatment that is based on an assessment of their needs and preferences’.

It is not always easy decide if our care is really person centred. We believe we are doing our best, but taking a step back to look closely may help to see things differently, re-focus on what is important and would make a difference to people we care for.

Sensitive and creative communication is one of the most important skills we use to build a relationship and develop a deeper understanding of those in our care and it may mean involving family and friends too for those with a reduced capacity. It is a foundation to person centred care, allowing us to develop a rapport and gain an understanding of the person, making their care meaningful alongside the clinical tasks. Emotional intelligence plays a huge part in nurturing these positive relationships, being aware of our own emotions and those of others.

With so many pressures on healthcare, it’s easy to become stressed by the ongoing focus on being person centred, but if we start at the beginning with planning care, we are on the right road. All too often I see care plans that have been written in a task-orientated way to meet clinical needs, with an emphasis on what the person can’t do, not what they can do or would like. A care plan with a holistic approach is the beginning of great person-centred care and should be based on values such as individuality, independence, respect, privacy, choice and dignity. All these values can also be talked about a lot, but we need to make them more than just words on a page, but the lived reality of people we support.  It should be written with the person, not just about them and their clinical needs. Care plans should become just as important as a medication chart – one prescribes medication whilst the other prescribes the care, specific to that person.

The Care Quality Commission in the UK also provides helpful guidance:

 ‘Care planning is focused on the person’s whole life, including their goals, skills, abilities and how they prefer to manage their health. Where appropriate, Health Action Plans may also be in place.

People are empowered to make choices and have as much control and independence as possible.

The service enables people to carry out person-centred activities and encourages them to maintain hobbies and interests.’

Of course, having a good care plan is one thing, we then need to implement that care, adapting with the changing needs of that person. This takes a whole team approach with ongoing support, learning and development to ensure we continue to deliver the best care that we can. It is important to continuously monitor outcomes too, allowing us to assess levels of care are right. This can be in many forms such as qualitative measures, for example, reduction in falls, MUST/weights, well-being tools, Geriatric depression scores, use of medications (psychotropic and analgesic), hospital admission rates, infections etc, which can all be key indicators of just how well we are doing. This should be used in conjunction with feedback from end users and relatives, taking appropriate action on the outcomes. It will highlight what we do well and where we can improve further, but we must be open to change.

Being person centred means different things to different people. We just need to remember every person we care for is unique and individual and we must take time to understand them and their needs – investing time to plan holistic care with effective outcomes which ultimately equals both happier people and a fulfilled team.

References

Health and Social Care Act 2008 (Regulated Activities) Regulations 2014: Regulation 9

https://www.cqc.org.uk/guidance-providers/adult-social-care/person-centred-care-good

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Rose Lodge care home in Exmouth is pioneering therapeutic work for people with advanced dementia. As the counsellor undertaking this work over the past two years, I hadn’t realised how unusual it was to offer regular therapeutic support to people during the latter stages of dementia until I met Sally Knocker in the Meaningful Care Matters team.  The most comparable work in this area is most notably the ‘Adaptive Interaction’ approach (AJ Astell, 2022, Ellis and Astell, 2016).

I have been fortunate to have worked in social care settings ever since I got my first job in a care home during my teens. Unbeknown to me at the time, I now believe that these formative career experiences instilled in me a deep sense of the value of the human experience and certainly, caring for others at such a young age developed my ability to feel comfortable in the intimate presence of another.

When I was a care worker over 25 years ago, there was very much a focus on doing tasks rather than being with another.  But at the time, my impulsive teenage brain didn’t think much of those ‘rules.’ I came into the role without any sense of separation between myself or the people I was caring for and so I found it very easy to love and be loved by them.  This is a quality and instinct that I now know is something that the Butterfly Approach to dementia care looks for in team members.

I since went to on qualify and practice as a Children and Families Social Worker and in 2018 retrained as an Integrative Counsellor, but my experiences as a care worker have remained with me. It is a joy to me that 20 years after hanging up my care worker boots, I can return to where it all began and use my therapeutic skills to improve the lived experience of people during the final stages of their life.

Giving exquisite attention

Rose Lodge initially approached me as a prospective counsellor for the staff team, but it was the owner Peter De Groot, who invited me to consider working directly with people living with dementia.  After accepting this proposition, I admit to having a little panic and thinking ‘What have I done? What on earth qualifies me to do this work?’ But then it occurred to me, why shouldn’t I be able to work therapeutically with people with dementia? Undoubtedly, there are huge barriers to this work, but my approach always aims to meet a person exactly where they are and be with what presents itself. Why should working with people living with dementia require anything different?

When a person’s dementia has advanced to the stage where they are predominantly non-verbal, alternative ways of communicating are necessary if that person is to experience feeling truly seen and held. When I was a counselling student I had a wonderful tutor, a very inspirational man who introduced to me to the notion of offering another person our ‘exquisite attention.’ What this means to me is to be totally and completely with the other; you are not doing anything else. You are noticing everything; the breath, the movements, the facial expression… and from this place of exquisite attention it is possible to become completely attuned to the other person. You are really ‘being with’ and it is possible to strike up a body-to-body conversation which enables me, as the therapist, to gain insight into how the other person is experiencing their emotional state – their internal emotional world.

Understanding concepts of dysregulation

I am often asked to work with people who are experiencing a degree of anxiety and distress. During the early stages of my work, my aim is to support the other person to regulate their emotional state. What it means to be ‘regulated’ in layperson’s terms, is to be in a state of internal calm which is optimum for social engagement.  I have often encountered people trying to speak and then the wrong words come out, or no words come out at all. It must be devastating to lose the ability to express yourself and to lose touch with what is happening around you. Even the most wonderful care home environments must be overwhelming at times and so it makes sense to me that people who find themselves in this situation experience intense emotions of fear, anger, and frustration at times. My anecdotal experience is that if the other can be helped from a dysregulated emotional state and into a regulated emotional state, their ability to perceive the world around them improves and those stuck words might just loosen up a little.

I mainly work with people the care teams are struggling to reach, those individuals who are unable to engage with the day-to-day activities offered by staff.  I spend between one and two hours, up to three times a week with each of the people I work with. To create an appropriate therapeutic environment, I am thoughtful about the details of each session. I choose the same quiet location and ensure that chair arrangements are the same on each visit. Additionally, I wear the same light perfume and at the beginning of every session, I play the same piece of classical music (which we know again is very right brain activating) in order to create further opportunities for the other person to gain a sense of familiarity and ‘place’ the session.

Finding ‘Jane’

‘Jane’ was the very first person I worked with at Rose Lodge and I believe that despite the very advanced nature of her dementia, we were able to establish a deep sense of connection. Jane was non-verbal, with the exception of when she was distressed, and she would repeat the same two sentences over and over again in varying pitch and intensity. Other than that, there was almost no verbal communication. Her facial expression was severe-looking nearly all of the time and historically she had clawed at her skin during times when she was extremely agitated. She wasn’t mobile and rarely offered any discernible response to environmental stimulus.  The word ‘locked-in’ really came to mind. I was asked to work with her because the care teams wanted to alleviate her distress and find opportunities for her to engage and communicate with one another.

Beyond words

I vividly recall sitting with Jane for the first time. She was clearly distressed and emotionally overwhelmed, manifesting in a rigid body posture, anxious facial expression and repeating her usual sentences.

When faced with the overwhelming effect of another, we often feel the call to intervene verbally.  Perhaps our intention is to find out what is wrong and/or attempt to help and support the other person in this way. Often this can be an effective response, however, when the other is in a state of dysregulation and/or does not have the capacity for verbal communication,  setting the stage for a talking exchange, runs the risk of exacerbating underlying feelings of frustration and/or incompetence or simply has no impact at all. Instead, a process of co-regulation requires no verbal communication at all and can have the effect of settling the nervous system of the other.

For co-regulation to be effective, the therapist’s own nervous system needs to be regulated. Put simply, during my work with Jane, I needed to be in a state of internal calm, to be her ‘anchor in the storm’ so to speak. Rather than joining Jane in her overwhelm or seeking to change or fix her emotional state, I sat alongside her, demonstrating presence, acceptance and a regulated emotional state, all the while offering my ‘exquisite attention’.

Not trying to fix anything

I was meeting Jane exactly where she was. In terms of intentionality, I was simply alongside and relating to somebody who was in a deeply distressed state. As she repeated the same sentence,  I gently mirrored her words, slowing their pace and intensity, all the while offering that exquisite attention. During our first session, we sat just like this and over the course of an hour, Jane’s expressions of distress gradually diminished until her nervous system was regulated – this was visible when the rigidity left her body, her facial expression became softer and her verbal expressions of distress had ceased. From this place of internal calm, Jane looked at me so intently and with such awareness of my presence, that I truly felt that we had reached a place where she was present with me in that moment.

In response, I continued to sit alongside her, attending to her with my exquisite attention and mirroring her breath, facial expression and movements and we just got to know each other in that way. When, intuitively, I felt her being open to a closer connection, I very gradually moved my hand towards her, until finally my fingertips were touching hers… in response she moved her hand towards mine, picked it up and held it gently. We stayed just like that. I didn’t change anything.

I was all the time just following Jane’s lead. For people living with advanced dementia, therapeutic work has the potential to offer choice, control and opportunities for self-expression in a world where this would be otherwise unavailable. The act of simply slowing an interaction right down and providing time and space for a response created an opportunity for Jane to seek and accept human connection.

As our work together progressed, Jane’s expressions of distress during the sessions became much shorter until they diminished altogether. Simultaneously, I also noticed that Jane’s potential for reciprocity and communication increased. She would often smile when I greeted her and offer a ‘hello’ and always, during our sessions together, Jane honoured me by offering me the same exquisite attention that I offered her. There were times when I could see in her eyes that she was drinking in the opportunity for connection and occasionally during these times she would nod and say ‘yes’ as if in confirmation that we were getting it just right.

To the credit of Rose Lodge, I worked with Jane in this way three times a week for over a year. The feedback from the care team was that not only were Jane’s distress levels reducing during our sessions together, but outside the session she was more at peace and responsive.

Jane and I didn’t need anything extra to make our sessions meaningful. Just me and her and a little bit of Chopin. For some of the other people I work with, I have found it incredibly meaningful to connect with aspects of their culture or faith during our sessions. One woman who was otherwise unresponsive, almost always lifts her head and demonstrates recognition to familiar prayer or hymns. (I discovered this by seeing a small tapestry with the Lord’s prayer on her wall and spontaneously bringing it down to read to her.)  By paying close, exquisite attention to the other, I have found it possible to find opportunities for engagement and connection where, at first glance, this might not feel possible.

A call to action to other therapists

It is my belief that working with people living with advanced dementia has made me a better therapist. My ability to become highly attuned to the internal experience of the other and attend to the non-verbal – what is experienced but remains unspoken – enhances my counselling practice in general.  

I’ve learned so much from the people who have allowed me to work with them. It is my hope that other therapists will venture into this still relatively unchartered territory and that other care homes will invest in this important work so that those with advanced dementia can continue to share the joy that flows from human connection.

This article is based on a longer interview with Sally Knocker, from the Meaningful Care Matters Team and the full podcast can be accessed by members of the Members’ Resource Portal.

References

Astell, AJ (2022) Using Adaptive Interaction to Simplify Caregiver’s Communication with People with Dementia Who Cannot Speak, Methods article, Front. Commun., 12 January 2022, Sec. Psychology of Language, Volume 6.

https://www.frontiersin.org/articles/10.3389/fcomm.2021.689439/full

Ellis, M and Astell, AJ (2017) Adaptive Interaction and dementia: how to communicate without speech, Jessica Kingsley Publishers

Key Points

Rose Lodge care home in Exmouth has been investing in a therapist ‘in residence’ working every week with people in the later experiences of dementia or those whom the team find hard to reach.

Mary’s approach is to give focused attention to people based on body-to-body connection rather than words – as much as possible allowing the person with dementia to take the lead.

Mary draws on concepts of dysregulation and believes that many people living with dementia are often facing a dysregulated state, which makes connection very difficult.

Over time, these encounters have resulted in rich moments of relationship and have also enabled the person to be more content and connected outside of the sessions.

Mary feels that working with people living with dementia has also enhanced her skills in her general counselling practice.

It is unusual for care homes to invest in this kind of specialist input, and it is hoped that this article will inspire others to explore this.

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We have just celebrated a decade of adopting the Butterfly (and latterly Dragonfly) ethos of support and the journey has been transformative. When we first embarked on this, we had no idea what a journey it would be. The initial upheaval was of epic proportions, and we lost many staff who were uncomfortable with the shift from task-focused to emotionally driven care. However, those of us who stayed – many of whom are still with us – share a goal: to ensure that the people we support are recognised as part of a family in which they have an identity. To achieve this we have to recognise our own vulnerability and, in doing so, share the feelings which our family members experience when dementia steers their life in a direction which was never a part of their plan. This approach emphasizes our belief that understanding and connecting with the emotional experiences of our family members is as crucial as addressing their clinical needs.

The sustainability of this approach lies in Alice’s lesson – emotional intelligence – and, for this to be effective it must be modelled by leaders.

We are a nursing home, and we recognise that our nurses are central to this philosophy. We invest in career progression for our support staff, offering the opportunity to advance onto becoming Nursing Associates and, for some, to top this up to full nursing degrees. This investment offers career progression and means we retain our nursing team but more importantly, it grows nurses who really understand our ethos of support and can balance a clinical and emotional approach. Clinical practices include medication, dressings, diagnosis, the recognition of deterioration etc. but it is so much more than that – it is the ability and desire to make each of these necessities part of a relationship in which we understand the vulnerabilities and emotional fragility of the people we support and hold that centrally in our approach. Our nurses know this and use it as an essential tool in their clinical approach every day. They have a passion for what they do and are an inspirational leadership team.

“Social care is a safe place for people of all ages to find a family, the type of family that looks out for one another and helps in times of need. The social care industry – Landermeads in particular – has shaped me in to the person I am now, it has taught me how to nurture, how to be patient, how to listen, how to care and how to love. This is evidently shown through the dedication to progression that is the Nursing Associate course; which allows a way to channel those learnt traits into something that matters.” Georgia Bowers, NA

We equip our other leaders with the tools to support both family members and staff – they enhance their skills through RQF qualifications at all levels, are Mental Health First Aiders, PBS Associate trainers,  LGBTQ+ trainers to name a few – but they share the same intrinsic training as all staff in identifying their own vulnerability and the skills to use this to understand what a family member may be expressing through their behaviours. It is this which makes our Butterfly/Dragonfly accreditation sustainable. It is something which each member of staff owns and shares daily.

Alice’s lesson transcends her individual experience; it is a universal message to us all about the power of connection. None of us can offer that connection fully unless we feel empowered to do so. It’s about embracing vulnerability as a strength which can be shared to change lives. In doing that we in turn empower family members like Alice to be part of the team and have an identity even in the face of dementia.  

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Our collection of feelings grows, becoming more complex as we age, depending on the experiences we have had throughout our lives. Our ability to empathise, and our inclination to demonstrate empathy, when we see someone in distress, is equally complicated.

Sometimes as an adult it’s tempting to rush in and demonstrate empathy towards someone else when we witness their distress. Often that isn’t empathy but a kind act with a temporary solution. On the other hand, sometimes, we turn away because seeing someone else’s distress feels uncomfortable – it reminds us of something we would rather not think about.

Those are sadly the common experiences of people living in formal care services.   A brief hug delivered in passing, a cheer up conversation delivered with good intentions, the offer of a cup of tea is the classic response.

For some people, reliant on the support of others, happiness and pleasure comes from knowing the care relationship is meaningful and genuine.  Undivided attention `designed just for me’ and provided by a care person who understands me. Those precious moments when two people, the person with dementia and the care giver, are in tune with one another.

We understand that whilst dementia can restrict our ability to explain our feelings in a way that is easily understood it (dementia) does not restrict us from feeling emotional pain. This is understood by the Butterfly care giver who has gone some way to develop their own `experiential resource’ – to understand their feelings. Kitwood identified these moments in his seminal work Dementia Reconsidered. He refers to the requirements of a care giver and identifies the importance of agreement and harmony between the care giver and the person with dementia.

We cannot all have had the same experiences as everyone we meet. But we have all had episodes that cause us pain. Often though, we carry on without dwelling on our hurt because going back over it can mean reliving painful feelings.  But when buried at the back of our minds the feelings remain ready to resurface.  A development of dementia makes it much harder to interpret those feelings.

Butterfly care is not provided by a well-meaning care giver with good intentions. The Butterfly care giver has reflected and learned about their own painful experiences. Recognising the links to the lived reality of the person being cared for, loneliness and loss, the powerlessness of dependency, outpacing and objectification. From personal self-examination of our own similar experiences and feelings we can learn to understand. We call this developing our emotional intelligence. If we fail to `recognise our own areas of damage and deficit’ we continue to carry the scars and hurt that those unhappy experiences caused us (Kitwood 1997. p 128-130). 

Once, while I was chatting to someone in a bookstall queue, we asked one another what we did. When she told me she was a Macmillan nurse tears immediately sprang to my eyes. I had recently lost my Dad to lung cancer and his final hours were not as I would have wished. I hadn’t properly worked through in my own mind how the experience left me feeling. I’d bottled it all up.

Bottling up feelings is a very common adult way to ‘deal with’ emotionally painful experiences. We can fool ourselves into thinking we’ve moved on until we have a ‘Macmillan nurse’ moment and the feelings bubble to the surface and we realise the pain is still there.

Making care experiences, the Butterfly moments, meaningful for both the care giver and the person living with dementia can leave both people feeling fulfilled. Both people in touch with their own vulnerabilities, whilst supportive of one another.

 Let’s make it more like this.

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Silent night, holy night!
All is calm, all is bright.
Round yon Virgin, Mother and Child.
Holy infant so tender and mild,
Sleep in heavenly peace,
Sleep in heavenly peace.

What is your favourite Christmas Carol?  Mine is Silent Night. I find it ironic that this incredibly well known carol which is reverently reflects peace, serenity and calmness was in fact, silent. The pragmatist in me asks – Was it really a silent night?

Let me share what 20 years of Nursing and being at my own children’s birth has taught me…. THERE IS NOTHING SILENT ABOUT CHILDBIRTH, as for Holiness (defined as living life in total devotion to someone Meriam-Webster (2022) and sung by Olivia Newton-John in Grease The Motion Picture (Farrar., 1978)) there was certainly a feeling of serenity, dedication and devotion whilst being hopelessly in love with the precious gift of my children…

Back to the Christmas Carol! A stable with animals, is far from the concept of silence and serenity as one can get, yet I imagine a sense of devotion like nothing else was experienced by Mary and Joseph as they stared at their new born child thinking ‘sleep in heavenly peace’. It is this devotion that causes an experience that impacts our core spirit and defines who we are as human beings. But, there is more to this story.

Let’s look at the story of how Silent Night was written.

It was Christmas Eve, 1818, when the now-famous carol was first performed as ‘Stille Nacht Heilige Nacht’. Mohr, the young priest, played the guitar and sang with the choir director who had written the melody. The backstory is that it was the night before Christmas, the church organ was broken and people were gathering for Christmas Eve Mass. Mohr went for a walk in a tiny Austrian village, he looked out over a very quiet, winter-laden town and was inspired by the peace and serenity despite being ravaged by the Napoleonic Wars

Benedict., 2021

Fast forward nearly 100 years, this Carol was famously reported in 1914 being sung by the German Soldiers in the World War 1 trenches, their counterparts, the British Expeditionary Force joined them resulting in ‘The Christmas Truce’ in ‘no-mans land’

Museums, n.d.

It is clear this carol represents finding freedom and peace in less than ideal circumstances.

Upon reflection, I have come to realise, this concept of peace is important in representing what true person centred care should look, sound and feel like.  Just as that first Christmas was far from silent, and in the chaos of conflict, war and turmoil, there is an opportunity to find peace.  The same could be said about the chaos created by living with a dementia, disability, or mental health problem. We seek to create a sense of contentment and peace for us all.  I would suggest this comes from being connected with our true feelings and emotions.  When we can connect with feelings and emotions, we can reach out and touch someone’s core spirit, that’s where we find peace, contentment, and a sense of wellbeing. Regardless of how you express yourself this Christmas, peace is an awakening that impacts our core spirit.  So, this Christmas, despite the chaos of life’s lived experience, our wish for you is the peace, devotion and contentment that comes from ‘Silent night, Holy night’.

Happy Christmas.

Bibliography

Adetunji., J. (2019, December 19). The Conversation. Retrieved from The Conversation. Academic rigour, journalistic flair.: https://theconversation.com/the-humble-origins-of-silent-night-108653

Benedict., R. (2021, December 21). Catholic Say. Retrieved from Catholicsay.com: https://catholicsay.com/the-story-behind-silent-night-the-famous-christmas-carol-songs/#:~:text=What%20is%20the%20story%20behind%20%E2%80%9CSilent%20Night%E2%80%9D%3F%20The,was%20ever%20good%20at%20and%20well%20known%20for.

Gruber., F. &. (1818). Silent Night Holy Night. Orbendorf, Salzburg, Austria.

Museums, I. W. (n.d.). The real story of the Christmas Truce. Retrieved from IWM: https://www.iwm.org.uk/history/the-real-story-of-the-christmas-truce

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We have seen a strange cocktail of conformists and rebels in the Covid19 pandemic where emotions have been heightened.  Some people react very strongly where they feel they are being compelled to do something by a Government or other regulators. Families have been extremely frustrated by limited visiting and there have been many references to how the rights of residents living in long term care have been diminished, due to the enhanced restrictions. A whole social media movement #rightsforresidents has emerged out of this anger.

I often ask myself how much we should be questioning the established status quo in care homes, which in some cases still continues to restrict people’s freedoms due to concerns about keeping people physically safe.

During the pandemic I found myself having to push back against a range of decisions which had been made in relation to infection control, for example people not being able to have condiments on the table such as ketchup or salt and pepper, or things being removed from tables such as books and pictures to prompt conversations.  My role as the ‘rebel’ was not to disrupt too much, but more to keep asking the questions about whether enabling people’s rights and our duty of care to keep people safe were being balanced appropriately.

One particular example comes to mind.  A Canadian colleague was sitting at a table where an older woman of Italian background was eating.  The woman as a mother and grandmother to many children, wanted the worker, a young woman, to eat with her and kept offering her things to eat.  The worker was wearing a mask and knew that she was not allowed to remove the mask to eat, and this caused some distress to the woman, when she couldn’t accept the food.  My question was whether the decision to remove the mask and eat something with the woman, was more important than the rule not to remove the mask?  The worker was clear that her job would be on the line and the Ministry might take strong actions if she disobeyed the regulations.  But the ‘rebel’ in me couldn’t help wondering why it is we accept this kind of control without question?

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