This video shows a beautiful series of sketches and reflections by our partner Suzie Beresford, inspired by her bold journey.
We wanted to share this lovely clay work from one of our bold partners, Louisa, who wrote some beautiful and moving words about the significance and symbolism of windows for her this year in particular.
“We have supported families experiencing window visits and watched the whole range of human emotions play out, from smiles and laughter to emotional meltdowns and impotent rage. All played out in front of large picture windows.
I’ve spent time with residents looking out of their bedroom windows coaxing them to ‘come outside’ and having the honour of being with them in the sunshine as their mood lifts again and we can enjoy just being in that moment.
Decoration of windows has been a feature of this year too. Acetate rainbows, anniversaries, birthdays, rememberence, halloween . . .
I never gave any real thought to this prior to working my clay but windows ‘communicate’ whether it’s the solidarity of the rainbows, candles, green ticks or a RNLI sticker, we convey strong messages through them. Never more so in my lifetime than this past year!
Windows are generally transparent, bring light and fresh air and birdsong to the environment. They are a connection to the wider world and convey reliable information about time, weather conditions etc. All while protecting from outside elements.
I really enjoyed working on my window and although I’ve done collage and claywork before as a crafting activity I feel like I’ve a better understanding of how to use them as a medium for self expression.
There has been a lot of information shared over the course of this project but one of the main things that I’ve taken away from it is that ‘art’ is a powerful tool for communication and that collaborative approaches between residents and staff can only lead to more person centred care planning and delivery of said care.”
I have to start by saying how much I’m missing people…everyone… and especially my Capital Theatres family and participants from our dementia friendly programme. I really struggle hearing about the difficult and tense times many of our participants are going through and not feeling like I can help in any way. However, this strange period in all our lives has also given me the opportunity to really focus on what people are saying to me and what we as a theatre can offer to make life that little more bearable. A positive is that I am really starting to engage in a way that I just hadn’t considered before with our dementia friendly community.
Last year I had the privilege of meeting lovely Ron Coleman and his partner at our monthly drop-in café. At that time Ron was still developing his theatre performance about Alexa and how it was helping him to manage his dementia diagnosis. I was fascinated and fleetingly considered what else could be achieved through technology…and now here we are having no option but to fully embrace the digital world no matter our age or standing in life. This time has really given me a push to think outside the box and reinvent how we are delivering our creative work at Capital Theatres now. From a place were I never considered a real need for digital delivery, I am now quite sure that the use of digital technology must always run alongside our in-house activity and be a part in our arts programme whether that’s potentially live streams or pre-recorded material.
Of course, in my mind, nothing will ever beat that feeling of coming into a packed theatre, the sights, smells and anticipation in the air but since taking some of our activities online and tweaking them a little to suit digital platforms, it has become glaringly obvious to me that a permanent digital offer is crucial for many people who for whatever reason are feeling isolated at home or don’t have the capacity to come to a venue to take part. It gives a vital opportunity to meet and connect with others and be part of a creative community, albeit virtually. Recorded sessions that are available at a time that is convenient will be a great addition for loved ones and carers of people living with dementia. It removes some of the anxiety and guilt of not turning up on time or at all and allows them to take part at a time that suits them without feelings of rushing. However, I do need to keep in mind, that there are many families who don’t have access to the digital world or a will to use it, and that’s fine too. It’s important that they are not forgotten as we travel down this road. At this time, I have tried to combat this by offering DVD formats of any of the online content we are producing and I am thinking of other opportunities to connect that don’t rely on ‘logging on’, such as audio options and being mindful of increasing access further through subtitles and signed performances. as standard. It’s certainly a steep learning curve and a big challenge in a reduced capacity and ever-changing environment.
Another wonderful outcome through being able to have a digital offer is that our programme has really grown lately with lots of new people being able to join in. It can be frustrating for me and our participants when they can’t book into our sold-out events. In the past, due to staffing and venue capacity I can’t create extra spaces but being able to have pre-recorded performances to share online or with DVDs has really allowed me to connect with people and settings who wouldn’t, couldn’t or kept missing out on tickets! We have been given an opportunity share our tea parties with people in rural Highlands to care settings in England. As mentioned before I had considered how we can perhaps start to live stream some of our most popular events such as our dementia friendly tea parties, now I’m convinced it should be a part of a regular programme. It would give an opportunity for larger care homes without staffing capacity to take groups out to still take part in the wonderful live music or for those who miss out on a ticket to still take part at home with their own afternoon tea!
When we closed our venue doors towards the end of March, I’m not going to lie I went into a very overwhelmed state of not knowing what to do, if our programme had any relevance at this time, whether people just found my being in contact a nuisance,…but as I should have expected, as it’s always the way with our wonderful community, by talking and listening to our participants it quickly became clear that our dementia friendly work had to keep going and find new ways for people to keep connecting. It was from feedback that I realised, start with what we do well already and think about what small changes can we make to continue. I didn’t need to be thinking about ground-breaking projects but just keeping people supported, connected and feeling part of something bigger through these darker weeks. I’ve said it many times but the very essence of why our programme at Capital Theatre has continued to flourish is our wonderful focus group of persons living with dementia, our volunteers, wider participants and staff. All I need to is listen to them and the rest falls into place!
We have worked hard over the last 3 months to create “Raise The Curtain” – our digital programme at Capital Theatres whilst our venues are closed. Our dementia arts programme now includes twice monthly drop-in chat sessions with guests popping in from other organisations, contact less afternoon tea deliveries with pre-recorded performances uploaded on You Tube in time for folks to sit down, relax and enjoy a variety of music. We are also sending ‘Joy To The Moment’ short films in collaboration with professional artists and the general public to care settings and day services by DVD to allow them to be shared as many times as required for socially distanced groups or those who are confined to staying their own rooms. Our popular Tea & Jam session was the first activity to go online and with nearly 50 participants it was the session that cemented that there was most definitely a need for people to continue engaging and thriving through arts. All of this has an aim of just taking a little bit of stress and strain away from an afternoon by providing some fun and laughter in the moment together with good cakes and cracking entertainment!
As the weeks go by, it is clear that it could be a while before many of our more vulnerable participants may feel confident to come back into a large gathering at our theatres so we have plans to continue online with our programme and to consider a blended way of slowly being able to provide our live performance and take part opportunities. Our Autumn programme will see opportunities to partner dance together with live and pre-recorded tuition and a live afternoon dance with a performance by World champion dancers. We have a series of early evening ‘Sundown Stories’ online, and in DVD and audio format and a creative writing project for people living with dementia. Lots to keep us going until we can once again be together in the theatre.
Feedback from the sessions has been really fantastic and with lots of people offering their views which is great as it allows us to keep thinking about how we can really make this digital offering work and how to get it out there to the most people.
So for me, so far I’ve had an opportunity to really challenge myself to think creatively about how to continue connecting with the wonderful community of persons living with dementia at Capital Theatres whom I’ve become so very fond of and miss each day. I’m really starting to think outside the box about ways to offer people opportunities to take part and continue to create and enjoy the arts. So for that, and that alone…Covid 19, I thank you!
This digital way of working still wouldn’t be my first choice, as I’ve said nothing beats the thrill of live performance and I’ve had to quickly skill up on using technology with a bit more know-how and not my usual attitude of ‘we’ll just see what happens when I press this!”
Every so often my little inside voice has the personal struggle and panic that what we do isn’t “essential” and not a “priority” but I realise that goes against the very belief I hold true about the profound impact the arts can have on health and well-being of everybody including persons living with dementia. I see it every day; from the person I’m told probably won’t engage with me who when I find just the right song can sing it to from beginning to end. From the sister who says, “I can’t believe he just got up to dance jive with you, I’ve never seen him dance” to the daughter who cries as she sits in the audience watching her often disengaged and agitated father who is playing his long forgotten harmonica and delivering a piece of theatre that he has been a part of creating. Then I remember that the arts has a huge part to play in helping us all to continue flourishing through life and I’m driven to find ways to get through these strange times the only way I know how, by sharing my love of theatre with everyone.
(Photos supplied by Dawn Irvine with permission to share on “bold” social media accounts)
With my gardening efforts once again curtailed by the weather on Sunday, I shut myself away in the sanctuary of my greenhouse and, as the rain battered against the roof, sat down to read ‘Loud and Clear’.
Link: lifechangestrust.org.uk/…/news-20-years-activism-people-dem…
Published by the Life Changes Trust, ‘Loud and Clear’ offers a historical account of how people living with dementia in Scotland have become activists and influencers in their own right over the last 20 years. It’s a delight. I got so caught up in the story of their successes and their struggles that I didn’t even notice when the rain stopped.
A few key figures feature strongly in the book and the author, Philly Hare, rightly makes no apology for this – it is simply an honest reflection of the enormity of their contributions both to the dementia movement and to the book itself. From a project perspective, it was lovely to learn more about the back story of Nancy McAdam, who has kept the bold Highland group firmly grounded. Nancy’s antics with fellow dementia activist Agnes Houston were mostly familiar to me, but I knew nothing of her history of community activism, such as protesting about GM crops and even spending a night in the cells. This brought a huge smile to my face – Nancy has lost none of her feistiness.
In introducing the book, the Trust’s Arlene Crockett observes that the courage and energy of the activists has inspired many individuals and in some cases has influenced their working practices and life courses. I am just one of those many individuals. The story of the ‘founding father’ of the Scottish movement, James McKillop, took me on a trip down memory lane. I met James only a handful of times and yet his influence on my work was profound.
James was diagnosed with multi-infarct dementia in 1999 at the age of 59. He had already been campaigning for several years when I met him and his wife Maureen in 2007. At that time I was the digital storytelling lead for the former Joint Improvement Team and working closely with Emma Miller to support a shift in care and support planning approaches. This required moving away from a tick-box approach to assessment that identified people’s deficits and needs and matched them against a menu of one-size-fits-all services. The alternative focus on ‘personal outcomes’ was based on having a conversation to understand what matters most to a person in a whole life context and the contributions he or she could make, with the right support, to achieving this. The McKillops demonstrated extraordinary generosity, inviting Emma and me into their home on several occasions and giving up a lot of their time to share their triumphs, challenges and insights with us. Their digital stories illustrated perfectly the impact of the two very different assessment approaches on each of them and on their life together. They were shown at various national conferences and featured on a DVD which was used extensively as a training resource for many years.
One of the stories that James told called ‘Finding the Right Words’ proved to be a particularly valuable communication aid. He highlighted the importance of finding the right words when diagnosing dementia, communicating with someone with dementia as a care professional and as friend and crucially, when talking about someone with dementia. He did so in such a compelling way that he greatly increased my understanding of the importance of language and the need to pay attention to it. Although James spoke about the difficulties he sometimes experienced himself in finding the right words on account of his condition, in the digital stories he demonstrated am uncanny knack of finding just the right words. These words kept the message simple and at the same time smashed the old cognitive impairment: wisdom binary to pieces. For instance, he advised that if the dementia activists were really going to make a difference, there was little point ‘preaching to the converted’. Instead they needed to speak to people who had ‘different ideas about what someone with dementia could do’ and to do that effectively, you had to ‘know your audience’. That meant listening. Indirectly, James’ eloquence also caused me to think about people who might struggle to find the right words, or perhaps were unable to find words at all. This prompted me to use more creative methods in my story work and to explore and put the spotlight on alternative forms of expression in my ‘personal outcomes’ work.
James’ generosity didn’t stop with the giving of his time and words of wisdom. Digital stories combine words and images and he gave me permission to use a truly stunning collection of photographs that he had taken. Twelve of these photos had featured in a calendar that he’d produced with his Alzheimer Scotland support worker, Brenda. James once again succeeded in finding the right words by giving the calendar the provocative title ‘Opening Shutters, Opening Minds’. It certainly opened my mind. Not only were the photographs remarkable, but James informed me that he had recently been ‘retaught’ how to use a sophisticated camera by Brenda. Retaught? At the time I had assumed that this wasn’t possible for someone with dementia. The camera itself held huge symbolic significance – it too had ‘Opened Shutters’ – in the form of conference doors. I learned that Brenda had slung the camera round his neck to enable him to gain entry to a dementia conference in the guise of a photographer because he had previously been refused entry on account of having dementia! This refusal had taken place as recently as 2000. I was staggered.
James caused me to think long and hard about the retained capabilities, potential and many different types of contributions that people with dementia continue to make to their own lives and the lives of others, often unseen. He also made me think about other perhaps less obvious instances of discrimination, exclusion and denial of opportunity for participation experienced by someone with dementia in ordinary, everyday life situations. When I later developed a series of digital stories to explore this I called it ‘Challenging Assumptions’ to acknowledge my conversations with James. I also used the attached photograph from his Opening Shutters collection on the front cover. This photograph captures an ordinary artefact– a dandelion clock – in a rare light and from the unique perspective of one man who happens to be living with dementia. While the dandelion clock is typically dismissed as a weed and has sometimes been used in a disparaging way to depict what’s happening to someone with dementia’s brain, this photograph demonstrates great vision and patience in capturing its extraordinary beauty. I’ve used this image repeatedly in my work over the years alongside the Henry David Thoreau adage ‘it’s not what you look at that matters, it’s what you see’.
These experiences eventually led me to complete a doctoral research study into the everyday citizenship of people living with dementia. James once again exerted an important influence through the pioneering work that he and fellow activists undertook with Professor Heather Wilkinson and others years before. Their efforts not only remedied the tendency to ignore, leave out or represent the perspectives of people with dementia in research, but also encouraged people with dementia to become co-researchers and teach researchers how to do research better. By the time I commenced my study, there was an expectation that men and women with dementia should expect to be actively and meaningfully involved in the creation of new knowledge and that principles of citizenship such as freedom from discrimination and having opportunities to participate and grow should be realised in research too. This made the research experience so much more rewarding for me and the people who took part and enriched the findings.
James’ influence continues. Recently I’ve been thinking a lot about the significance of the concept of ‘Opening Shutters, Opening Minds’ in light of the lockdown. The pandemic is exerting the greatest impact on people with dementia. While keen not to perpetuate the tendency to use body count as ‘the measure’ of the impact and course of the virus, it’s clear that a lot of people with dementia won’t come through the other side and this fact cannot be ignored. What’s more, many more people living with dementia (both those with a diagnosis and unpaid carers) will have deteriorated significantly as a result of the prolonged protection measures. Their anxiety and loss of confidence will be hard to redress. Yet there are many individuals and couples locking down who are exhibiting tremendous spirit and resilience. As we gradually begin to open the shutters in the months ahead, there will of course be a need to open minds – to the devastating consequences of the restrictions on the human rights of people living with dementia and to the important contributions that people living with dementia can and do make. It would be a fitting tribute to James and his fellow activists if this ‘opening of minds’ is led by people living with dementia. The publication of this book is a timely reminder of the type of support and encouragement needed to ensure their voices are heard – loud and clear.
As we are, mindfully, moving to the next stage of opening up our lives again, I have increasingly been thinking of our first two cohorts of BOLD leaders, over the past few weeks. Whilst the BOLD team continues to develop meaningful ways forward for the BOLD programme to continue and build, during and after these surreal times, we have been missing each other’s physical presence. As part of the programme we have had the chance to spend two equally playful and intense residency days in Inverness and North Berwick together with our leaders. During those respective residencies, my contribution as creative facilitator has focused on physical and voice work and has included theatre exercises to physically explore ‘embodied leadership’ models and positions, such as:
· Leading and following – sensing and observing how the body responds to either
· Leading from the front, where the leader sets the pace, destination and direction
· Leading from the side, where the leaders guide each other side-by-side
· Leading from behind where the leader steers forward and maintains momentum
One particular Greek Chorus exercise exploring leading from the front has always reminded me of flocks of birds, taking turns to travel to warmer climates in winter and then returning again in Spring. My memory of this exercise (and I have enclosed a photo of one of our Inverness BOLD cohort, leading the way) has inspired me to make a short photo stream film a few weeks back, which I have entitled, Skein of Humans. This was initially just meant to provide a brief moment of contemplation and connection for our Skein of BOLD Leaders. We now would also like to share with you.
To give you a little context – as you may know, the BOLD project brings together people living with dementia, family members, professional carers, NHS staff, artists and people from all walks of life. Some of our BOLD leaders with dementia have been shielding at home, some are carers looking after their families and neighbours, some are artists still supplying activities to those who need them desperately, and some are NHS staff living in caravans outside of the care homes they work in. I wanted to find a way to connect with everyone during these difficult times. Many people are isolated while others may be yearning for solitude, but most all of us are missing something or somebody. It is challenging for us all to focus on anything beyond the absolute necessary during these socially distant and worrying times. I started to experiment by making a photo stream, using images of landscapes taken during our BOLD residency weeks in Inverness and East Lothian and also from a recent tour of my Curious Shoes performances in South Uist , Lewis and Harris.
I have used a song that I love and that resonates perfectly with some of the physical leadership exercises. It is called Labouring and Resting and is a track by two very talented artists, Karine Polwart & Pippa Murphy from A Pocket of Wind Resistance (Hudson Records, 2017). I have had the pleasure of singing with Karine, as part of our Love Music Community Choir concert at the Usher Hall last year and she and her collaborator, Pippa, have given me their kind permission to use this song for the Skein of Humans photo stream.
Although the track talks about the flight path and formation of migrating geese rather than people, it is an example of the kind of teamwork and leadership, I truly believe in. It is based on building relationships rather than a more traditional command and control style of leadership and the success of the team is dependent on every team member taking responsibility for leadership and changing their position within the team according to what they believe is needed in each moment. It has really struck me that the ‘leading’ of a chorus functions in a very similar manner to a skein of geese flying, changing leadership and rearranging the flock when following – a Skein of Humans, or in our case a Skein of BOLD Leaders. Skein of Humans is only just over 3 minutes long. It showcases glorious Scottish landscapes and I hope you will take the time to watch it here!
I’m fortunate to have two part time jobs. I work as a research assistant at the University of Edinburgh with “bold” (Bringing out Leaders in Dementia) project and, I am also the family and community development worker with my local Church of Scotland.
I had started attending the church in January 2019 and started my employment with them a year later in January 2020. Our church has a strong community focus and has a large congregation with over 70 elders. I was just starting to get to know the individuals in the church, and there were lots of people that I still hadn’t met.
The main aim of my role was to develop relationships between the community and church and offer support to the whole community with a focus on mental health, bereavement, dementia, and social isolation. When I started the job, little did I know that a pandemic lay in front of us.
During the first few months of my employment I was able to get to know and build relationships with different community and health groups. By February we had teamed up with a local mental health peer support group and had completed our dementia friends training in March. My next project was to set up a fortnightly gathering for people living with dementia. Plans were all put in place to start the dementia inclusive gathering, and then we were launched into lockdown which meant this was all put on hold.
My priorities took a sudden jolt and a shift in focus from developing to face to face community support, to setting up a community response to the COVID-19 pandemic. Church Elders contacted every member of their district to ask if anyone needed support and who could help. Within 48 hours of lockdown being announced, over 20 volunteers had come forward to help vulnerable people in our community with shopping, collecting prescriptions and offering a friendly regular chat to those who were feeling particularly vulnerable and isolated. We also began to gather a list of people in our community who needed support. This support was extended beyond our Church into our community as we advertised our response service on our local Facebook page, through our community council Facebook page, on our local council website and letting our local pharmacy know that we were on hand to help with prescription collection.
As word spread of the church’s response, the calls for help poured in did as did the calls from more people right across the community who wanted to volunteer to help. Volunteers came from all walks of life, all having a particular skill or ability to help in particular ways. Those who were unable to go out and shop for others would offer telephone support, others would help getting people connected online by talking through instructions on the phone.
Local community services began to direct people to our response team, and also offer their own services to those might need it. Our local yoga teacher continued to teach classes on Zoom, and instead of charging for her classes, asked those that came to make donations to the Church Local Mission Fund. In doing so we were able to direct these donations to support local charities and buy thank you gifts for those who were working hard to keep the community thriving; the Doctors Surgery, the pharmacy, the Co-op, the post office and newsagents. She also offered a much-needed relaxation yoga session to our local mental health peer support group at no cost, which is now meeting regularly on Zoom.
I am in the very privileged position to be co-ordinating the community response. Those who need support are directed to me and I then allocate a volunteer to help. I say I am privileged to be doing this because in doing so I have spoken to and learned from so many people, many of whom I had not previously met even though I have lived in this community for 10 years. What might start as a phone call to ask for a prescription to be collected, often becomes a time to get to know each other better. Lockdown stories are shared along with our fears and anxieties, things we are finding to do to help us cope, and usually we also share much laughter. At the end of every call I always feel we know each other a little bit more.
It really is an honour and so lovely to be part of the collective community response with so many other people.
I still have no idea what the many people I have spoken to since lockdown look like but feel I have made friends with people in my community that I didn’t know were there before.
In coordinating the response and being able to speak to so many people, I am constantly struck by the way in which the relationships between the volunteers and the person who needs support develops. I often hear of the lovely regular chat’s people are now having, the phone calls just to check up and see if someone needs anything, a regular shop turning into a regular delivery of a home cooked meal, or help with any IT issues over the phone they might be having so they can keep in “virtual” contact with family and friends.
One person said that they had never felt so much part of the community and another told me of the deepening relationships they were experiencing with people whom they would previously just have the briefest of exchanges with.
Several months into lockdown and the community response is still going strong. The initial frantic rush to get things in place and then to identify and respond to those who needed help has settled into a steady pace of its own, and the relationships and networks across our community continue to flourish.
As I look forward, I think about how much this lockdown period has shown me and how I want to hold on to those memories. I hope that we take many of those actions into the “new normal” – whatever that may look like.
I hope that we can continue to take the time to check up on each other and find out who needs help.
I hope that we continue to offer that help.
I hope that we will make the time to just chat with others in our community, to share our stories, our fears, and our laughter.
I hope that community relationships continue to develop and flourish in all circumstances and not just through times of crisis.
I also hope that every person who lives here feels and knows that they are a deeply valued part of this community. I hope that people will always be able to find someone here to reach out to for a chat, a hand of support or some time just to be able to laugh together.
