Bringing the inside out

Author Details

Susanna Howard is founder and artistic director of Living Words; Reinhard Guss is consultant clinical psychologist and neuropsychologist, Sussex Partnership NHS Trust, and Living Words trustee. Elements have been taken from Susan Allen’s Culture Cubed evaluation report. 

Artists from the charity Living Words work with care home residents to write down their sounds and words.  When the pandemic struck, as Susanna Howard and Reinhard Guss recall, the charity had to invent a new approach to engaging creatively with residents.   

Living Words online group

Since the closure of long stay wards for patients with dementia in large mental health hospitals and the move to smaller care homes in the community, much effort has been made to improve care for people in later stages of dementia who cannot be cared for at home.   

Nevertheless, some of the fundamental issues of living with late-stage dementia remain, often making dementia care homes difficult places to work and to be. Staff in care homes are faced with the well-known conditions of low status, poor pay and lack of recognition of their work. Relatives and families grapple with feelings of guilt and inadequacy over their inability to support their loved one at home, and residents are usually living with profound cognitive disabilities as well as historical fears over institutionalisation. 

As a small arts-based charity Living Words has been working with people living with the late stages of dementias in care homes for 15 years (see, eg, The Elder, undated). Artists trained in our “Listen Out Loud” methodology spend time with people in care homes, carefully connecting to and writing down the sounds and words of residents with dementias to form individualised Living Words books that resonate with that person. Each book is read out loud to the person with dementia, and shared with their families and care home carers, to also be read with the person.  

Living Words’ artists usually take up residencies in care homes for three months, working with the staff, and spending individual time usually with residents who have few or no family visitors or who may be considered unable to communicate. This leads to a better understanding of residents by the staff, stronger bonds, and often astonishing results.  People considered to have no meaningful speech may be able to express themselves in words that resonate with families and staff. 

All the residencies include workshops with the care home’s staff, including Living Words books created with the people providing care for the residents. This results in staff whose work is often poorly recognised feeling valued and supported, while gaining a better understanding of their residents as well as skills in communicating meaningfully with people in late stages of dementias in their care. 

In March 2020, just after Living Words founder Susanna Howard (co-author) was awarded “Woman of The Year” for our work locally by Soroptomist International, all of Living Words’ upcoming care home residencies stopped, along with a lot of our funding. Our immediate concern was to stay connected to those we had just finished working with, stay afloat, and work out how to respond to what was taking place.  

Feelings and needs 

During the first four months of the pandemic, we conducted a light consultancy with 10 care home staff we had previously worked with, who know our work well, along with wellbeing and management leaders of eight care homes and care home groups. This was done on the telephone and was to assess if there was a need for our work, and how we might address it. We wanted to hear the individual experiences, wants and needs of those on the frontline. As news stories started to emerge of the shocking situation unfolding in many care homes, we wanted to explore if and how our work could help. We were not making any assumptions.  

Here are some things we were told (staff anonymous to enable full expression of their feelings): 

I feel that I am seeing situations like ours on the TV news, but it doesn’t help me 

The council is helping the managers, but it doesn’t come down to us. We are run ragged. We aren’t part of conversations about what is going on. 

I feel so isolated, we know other care homes are going through the same thing, but we’re not connected. 

I haven’t seen my family, I am sleeping here to support everyone. No one knows this. 

It’s like a wasteland, no visitors at all. 

They are going downhill, so fast. 

I am scared of killing those I am caring for, so much so, I don’t see anyone. And I’m not talking to anyone about it. 

During this period, we also worked with our team of artists to explore ways of working one-to-one that did not necessitate being in the same physical space, for example phone, Facetime, or Zoom. We had no idea whether working remotely would be as effective as being together. We knew that working with people living with late-stage dementia would not lend itself to having a tech interface. We also spoke with relatives of those living in care homes, hearing their concern and, often, distress.  

Support and connection 

We came up with the idea to run a project that supported care staff and connected them across the UK, while enabling the words of residents, staff and relatives about their Covid-19 experience to be heard and validated.   

We decided to do this by piloting training in our Listen Out Loud methodology for care home staff via remote action learning sets, to enable each carer to work with at least two people living with late-stage dementias, writing down their sounds and words about how they felt to co-create individual booklets.  

Set across five or six weeks, remote action learning sessions took place weekly on Zoom and were 90 mins long.  

Each session had between six and nine care staff working with the Living Words team, and work undertaken outside of the session was digitally sent to Living Words ahead of the next week. Each cohort was part of a digital online group, to communicate about how the work was going, ask any questions and comment on how they were finding implementing the methodology.  

We conducted a series of one-to-one phone sessions between Living Words artists, care staff and relatives, resulting in co-created booklets of their experiences. We then published an anthology that would include the words of all project participants. 

Agile response 

Since Living Words is a small charity, we had agility on our side when Covid hit. Our small overheads meant that, while larger organisations were furloughing staff and shutting their doors, we were able to pivot. To run this project, we needed to get the funding, but we didn’t want to charge care homes as this was a pilot and we also felt it deserved public monies.  

Despite rejections and setbacks, we were delighted to gain full funding from Arts Council England, French Huguenot Church of London Charitable Trust (FHCLCT), Kent Community Foundation (Martello Fund), and National Lottery Community Fund (Covid Response). Simultaneously, we were reaching out to care homes that were new to us to engage in the project by promoting it through NAPA, My Home Life and our social media platforms. By Autumn 2020, we were ready to go. 

We called the project “Bringing the Inside Out” and it was delivered in October to December 2020. Five Living Words Artists delivered the action learning workshops to 17 care homes in England, Scotland, Wales and Northern Ireland and reached over 65 professional carers, activity coordinators and nurses, people living with dementias and their relatives. Care professionals taking part in the action learning were working with the people living with dementias in real life. Our artists worked with care staff and relatives via Zoom, phone calls and various social media platforms. 

Case study: Karen 

Karen is a professional carer in the north of England, in a large care home with carer and nursing units. She was told by her manager that she was to be involved in the project and when she saw the information beforehand her attention was drawn to the Arts Council logo. She reportedly thought: “Oh no, this is going to be over my head and not of any practical use. The artists will be floaty and the project will be ineffective. They don’t know what it is like in a nursing home.”  

Despite her reservations, Karen attended the sessions. By week 2 she was trialling the basics of Listen Out Loud with residents. “I am shocked, I am shocked that they are saying these words,” she commented. “I am shocked that people I thought didn’t have these words are telling me how they are feeling, in their own way.” 

In week 3, she continued, “…I have known this man for a long time, and I have been doing lots with him, but I am now seeing inside him, seeing him in another way and he is expressing himself to me.” And, by week 4, Karen was telling all of her team about the project, and was keen to work with other units and share the practice with her co-workers: “I am sharing the Listen Out Loud practice with my colleagues, and I want all of the units to know this communication is possible. This is changing things. Living Words needs to be in every unit, in every care home.” 

Here is an example of the words of one of the people with a dementia Karen worked with: 

Living 

Living 

I want to live, live, live 

That’s it, what else I can put? 

Live 

Live 

That’s it 

Can’t think of anything else, can you? 

And here is an example of Karen’s own words: 

 We Are Fighting You, COVID 

I’ve gone round with stickers today. 

It’s got a rainbow on it and it says: 

‘Going to be OK’. 

The units I can’t get through, 

I pushed them underneath and said: 

“Put them up!” 

Because that’s what we’re going to do, we’re going to be 

We’ll get through 

We’re going to be OK, 

because that’s what we do, we fight, and we’re gonna 

fight it. 

I’m not a fighter 

but I am. 

 At the end of the project Karen said, “I am ashamed to say I’m sorry that I thought what I did, what I thought the project would be like, because I am seeing a difference and it’s so simple and deep and, seeing a different side. This is just a start.” 

‘You have listened!’ 

Other responses from those involved in the project, included the following: 

It has been a very worthwhile experience and already has helped me in my everyday work and I am so glad I was asked to take part in the project (care staff member). 

Wonderful experience.  Keen to do with other residents (care staff member). 

A bonding with the residents (activity co-ordinator). 

It is another key to open dementia and unlock it (nurse). 

One resident stated succinctly, That’s my words – you have listened!” and an activity co-ordinator reported that she had heard a man speak, who she did not think could say anything more than “Yes”. A care professional said, “Listen Out Loud has positively affected my work” and there was a report of a resident eating better after her one-to-one session.  

Participants stated that stronger bonds had been made with residents, for example, “She makes eye contact more, smiles and holds my hand”.  They understood residents better by focussing on their words and getting a different type of sense from them.  It was noted by many participants that hearing and really listening were different. Peer-to-peer support was noted in all the sessions, sharing bereavement and feelings of loss, building friendships and connections. 

A kind of virtual hug 

The project’s remote working techniques combined with phone calls and text messages enabled feelings to be heard, validated and understood. One nurse taking part said: “From a glimmer of an idea, you’ve changed all these people’s lives….we haven’t been able to touch or hug, things are missing and in a way this project has given me, my carers and relatives – not even mentioning the people with dementia here – a kind of virtual hug, you’ve given it back. It feels to me like a healing, I’m healing.” 

Our poetry anthology Bringing the Inside Out was among the results of the project (see box).  In addition to one from our trustee Reinhard Guss (co-author), National Care Forum CEO Vic Rayner and Professor Sebastian Crutch from UCL Dementia Research Centre wrote forewords to the anthology. Among others who endorsed the book or contributed a foreword were actors Brian Cox, whose sister has dementia, Christopher Eccleston and Alison Steadman, journalist Jane Moore, broadcaster Bidisha, and Keith Oliver, who has dementia and is an Alzheimer’s Society ambassador.  Our online book launch was attended by over 70 people. 

What was learnt 

As one relative, Irene, put it: “I am really honoured to have been part of Living Words’ project, it has raised my spirits in this year of horror.”  Feedback from the action learning participants was overwhelmingly in favour of this mode of delivery, they voiced comfort in connecting with others in different parts of the country, they were open to express their emotions and journey using this particular method, and they gave thanks for being involved.  

Change reported by participants in the way they work, and how they now listen to and view residents differently, has been remarkable throughout and endorses the effectiveness of the methodology and the artists themselves.  Action learning sessions proved to be an appropriate and successful vehicle to deliver, explain and explore the complex and nuanced methodology.   

Families were grateful to the Living Words’ artists for their kindness, understanding, support and communication either by phone, Zoom or text messages. One participant said that her husband had noticed that she looked different, explaining that the work of the project had “gone deep inside and it’s settled now…inside feels different, it feels lighter”.  In a feedback survey afterwards, another participant’s remark sums up the extent to which the project exceeded planned outcomes: “I was sceptical at first but now, at the end of the project, I am amazed.” 

The project taught us that there is potential for the future in our action learning approach. In discussion with our trustees, we now plan to run six-week action learning sets for care staff with courses starting early 2022. Places start from £500 per member of staff, including specific year-long communication with our team and a top-up at the end of the year.  

Later in 2022 we will run courses for artists across the world. We have long wanted to respond to requests from artists to start Living Words in their region, and this will be able to happen. Indeed, it has already happened.  An invitation from the British Council and the National Theatre of Taiwan to share our practice in 2019 led to a Taiwanese artist starting “Living Whispers” there, and we are excited that our work is being taken up to such positive effect.  

Thanks to everyone involved in the project. The book – and all of our work – is dedicated to you. 

For more information, go to www.livingwords.org.uk or write to Living Words Arts. Glassworks, Mill Bay, Folkestone CT20 1JG.  

References 

The Elder (undated) Living Words and the Power of Being Heard: An Interview with Susanna Howard. The Elder, οnline at www.elder.org