To-ing and Fro-ing by Dawn Irvine

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)

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Opening Shutters, Opening Minds

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.

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Skein of Humans, by Magdalena Schamberger

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!

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Community Belonging – Lessons From Lockdown

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.

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‘It’s not just a lunch, it’s a lifeline’

Last week I posted about the fantastic work that one of our bold partners, the Eric Liddell Centre, is doing to alleviate the isolation and loneliness of people in the local community during the lockdown. I’ve been volunteering with the Centre’s lunch delivery programme since it started on the 6th April and in this post I thought I’d share my experiences with you.

Like many people, when Scotland first went into lockdown on 23rd March I initially got caught up in a frenzy of activity. Then, once all of our planned workshops and events had been postponed or cancelled, I experienced what’s been called ‘The Great Humbling’. I realised that as a non-essential worker the most useful thing I could do was stay at home. I was fortunate that my part-time role with bold kept me occupied. The Scottish dementia landscape needs leaders from all walks of life more than ever and the bold team are busy working on creative ways of delivering our leadership development programme that satisfy evolving social distancing measures. However, I sorely missed that immediate sense of contribution and direct connection with people’s lives.

I found out about the lunch delivery programme on 3rd April through social media. My sister knew I was feeling a bit disconnected and forwarded a WhatsApp message from the Centre asking for volunteers. I immediately phoned the CEO, John Macmillan, hoping the Centre had not already reached capacity. Given its excellent reputation and extensive community networks, the response had been swift and strong, but John told me they still needed a couple more volunteers. I sent my details to the lovely Zsofia who is coordinating the lunch programme and felt my mood lift instantly.

The programme is incredibly well organised. Zsofia responded quickly, emailing me a volunteer pack including a job description, volunteer agreement, letter of authorisation, volunteer badge and even a sign to display in the car windscreen. Importantly, there were crystal clear guidelines covering everything from the provision and wearing of masks and gloves, steps to ensure social distancing, the confidential handling of addresses and who to contact when the lunches had been delivered, with any queries and in an emergency. Everything was brought together in a matter of days. Together with my driver (my husband Iain) I’ve been helping with the ‘Monday run’ since the 6th April.

Each Friday Zsofia emails the list of names, addresses and the date and time we’ve to collect the lunches from the Centre the following week. The list varied a little over the first couple of weeks. I’d print it out and Iain would check out any unfamiliar addresses on his Saturday morning cycle. He’d then plan the most logical delivery route. The Centre is delivering around 100 lunches every week day and the collection times are carefully staggered to ensure social distancing. Each Monday we make sure we arrive at our allotted time. We knock on the side door and Fiona, the Centre’s terrific cook, opens it, steps back and invites us in. Gloves and masks are set out and the lunches for our
delivery run are sitting on a trolley, each in its own paper bag. Those meeting dietary requirements or preferences are clearly labelled and face the front.

Over the last few weeks we’ve had the same list of addresses and collection time and this has really increased our sense of connection with the people receiving the lunches. We know the route, their names, addresses and dietary preferences by heart. Although the service is contactless, we feel we are getting to know the people too in different ways. And they know when we’re coming and who to expect.

A few of the properties have main doors. In one such case, although I haven’t seen or spoken to the lady who lives inside, I know her preference for brown bread and there is always a little ‘please and thank you’ note sticking out the letter box. In another case, the occupant must look out for us because I can always see his silhouette through the inside glass door as I place the lunch bag on his doorstep. He waits until I’ve retreated through his garden gate before opening the door and I have a little chat with him from safe distance. He stands and waves and waves as we drive off.
Most people on our list live in flats, which has meant getting to grips with various door entry systems. I now know that one lady is recovering from a broken ankle and takes several minutes to answer the buzzer. Another is very hard of hearing and often doesn’t hear the buzzer, especially if she is watching TV or on the phone. I know which of her neighbours is likely to be at home and will happily let me into the stair. One man who lives in a second floor flat opens his door after I’ve dropped off the lunch and when I reach the first landing he shouts down and we have a conversation up the stairwell too. When I press the buzzer I’ve started to prefix ‘it’s the Eric Liddell Centre’ with my name and last week he surprised and delighted me by using it when I concluded with my customary ‘take care’.
The last lunch drop is to a couple. On answering the buzzer the lady used to ask ‘have you been before’ to establish if I needed directions, but now says ‘ah, you’ve been before’. She has always said ‘before I release the door, can I say a huge thank you to everyone at the Eric Liddell Centre and thank you for giving up your time on such a wet /windy / sunny day’. Our exchange through the intercom has gradually built over the weeks. It’s just small talk, such as mentioning that I’ve noticed there’s a little cake in with the lunch topped with lots of butter icing and in turn being informed of her husband’s sweet tooth, that it will give them both a boost, that they’ll miss these treats when this all finishes. I look forward to these weekly exchanges enormously.

As I mentioned in my last post, the lunch programme is just one example of how the Eric Liddell Centre’s vision of bringing communities together to respond to isolation, loneliness and disconnection is being realised. It’s a collaboration between charitable organisations, local private businesses and a host of donors and community volunteers. Providing a nourishing lunch is of course important, but as one recipient said to me ‘it’s not just a lunch, it’s a lifeline.’ The lunch says your community cares about, you’re not forgotten about, you’re not alone and we want you to stay well. I’ve welcomed the opportunity to do something practical and positive. It’s eased my own sense of disconnection. I’ll miss it too.

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Staying Connected Through Isolation Times

In this post I thought I’d share with you some of the fantastic work that one of our bold partners, the Eric Liddell Centre, is doing to alleviate the isolation and loneliness of people across the city of Edinburgh during the lockdown.
The Eric Liddell Centre is a local care charity and community hub founded in 1980 in memory of the 1924 Olympic 400m gold medallist, Eric Liddell. The bold project was delighted to partner with the Centre and through the leadership of its CEO, John MacMillan, it has been a source of practical support, knowledge and inspiration. The Centre shares our commitment to changing perceptions of living with dementia and to creating the conditions so that individuals and families can flourish. By developing a range of many valuable services, including a specialist dementia day care service, carers programme, befriending programme, lunch club friendship group and Caring Soles (foot care) Service, the Centre has shown that living a full life can be achieved with the right support.

Covid 19 constitutes a particular threat to older people living with dementia and carers and lockdown introduces distinctive challenges. The Eric Liddell staff members have developed a range of innovative approaches and enlisted volunteers to enable them to continue to provide important care and support and help people to stay connected through these difficult times – and they has done this at speed.

The dementia day care service has been making daily wellbeing and day/date orientation telephone calls to all people living with dementia who would usually attend the Centre, especially those living alone. Any concerns raised or picked up on during these calls are passed to the manager for resolution and forwarded to Social Care Direct if required. As people living with dementia may have difficulty remembering who staff are over the phone, visual prompts have been sent out by post in the form of an introduction letter with a staff / volunteer photo.

Other types of practical support include medication prompts, plus prescription collection from the pharmacy, shopping for essential items and a laundry service for people who would otherwise struggle. And there is a regular door drop of activity packages containing books, crosswords, Sudoku, adult therapy art books and pens, with many of the items donated by individuals and groups from the local community.

The Centre is also making weekly wellbeing telephone calls to carers both to check that the needs of the person living with dementia are being met and that carers are coping with an increased caring role. Alongside this, the befriending programme is now carrying out all befriending ‘matches’ over the phone. Befriending matches from before lockdown have continued and others have started. Although primarily for carers of people living with dementia, the programme is managing to support a few people living with dementia too. An intergenerational element has also come in during lockdown, with several Duke of Edinburgh students from a neighbouring school coming forward to be ‘friendly chat’ volunteers.
Martha Pollard, the support and education coordinator, has been busy compiling and sending out a newsletter each week called ‘The Isolation Times’. This is designed primarily for members of the lunch club friendship group that people living with dementia and carers attended together each week before lockdown. Martha has been phoning everyone on the day they would usually come to the lunch club to check in with them, and they all receive a hard copy of the newsletter posted out to them. It’s also circulated by email to the wider network of around 500 carers.

This is a delightful resource and an uplifting read, full of cheerful poems, photos from the archives, artworks and photos of nature, fun quizzes and exercise ideas. Every week there have been responses, contributions and ideas from readers, both by way of conversation and for future issues. For instance, one lunch club member had been clearing out old boxes and discovered a heartfelt poem that his daughter had written about her mother and sent it on to Martha to include in the next issue.

In addition to finding ways to continue supporting everyone already connected with the Centre, a new lunch delivery programme is available to individuals and families across Edinburgh who are vulnerable in some way and who would benefit from a little bit of extra support via the provision of a healthy and wholesome lunch at this difficult time.

The lunch delivery programme obtained funding from the Celtic FC Foundation’s Football for Good initiative http://www.celticfc.net/news/18004. This enabled the Centre’s chef Fiona to continue to run the Café Connect kitchen Monday to Friday, as well as regularly posting her delicious cookbook recipes on Twitter! The Centre’s neighbour, Signature Pub Group’s McClaren’s on the Corner then offered to work in partnership by opening up its kitchen, with the Signature chefs brigade only too happy to step in, sharing their expertise and doubling capacity. All that was needed was a quick call from John MacMillan for volunteers to distribute the lunches and the excellent coordination skills of Zsofia. The programme got up and running in a matter of days and stated on 6th April. It has since benefited from additional contributions from local businesses. Recent food donations have been made by Tesco Bruntsfield store and 181 Delicatessen, and a volunteer has been busy making protective masks. The programme is now delivering around 500 healthy cooked lunches each week and looks set to continue through the current lockdown.

I’ve been volunteering with the lunch delivery programme since it started and I’ve been getting so much out of it. I’ll share my experiences in a future post. There is so much good work going on across Scotland to support people living with dementia and carers to stay connected through these ‘Isolation Times’. Please share with us what you are doing by emailing: info@bold-scotland.org.

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The Power of Sharing Words and Stories

As my lovely colleague Magdalena wrote earlier in the week, it’s the simple things that can make a difference. A smile and a ‘hello’ can make a positive impact on someone’s day. A handwritten note or card with a personal message or a phone call just to check-in and, again, say ‘hello’ can help to make someone smile.

I’m a great believer in the positive impact words can have on wellbeing. Over the past few years I have spent a lot of time working in the community as a words for wellbeing facilitator running sessions for people living with dementia and their carers; elderly people in day centres; and women affected by domestic abuse. But it’s about focusing on the person as an individual and I’ve seen at first-hand, the way in which words – whether poetry, short stories or just a good old blether – can help to draw people together. Most importantly it allows them the opportunity to share their stories. And we all have a story or two to tell . . .

I use a lot of poetry when working with people living with dementia, and their carers too, because it’s accessible and of course uses rhythm and rhyme. We have had some great fun using poems about food, picnics and being rebels! Then we have had a go at writing our poems or creative writing together. Which is, for me, where the magic happens. The simple act of just having a chat about food or a picnic they might have been on allows people to express their likes, dislikes, opinions and gives an insight to them as an individual. Sometimes we come up with individual poems, other days we write a group poem and there are days where we don’t write anything at all. We just have a good, old chat.

And the most important part of this? It’s definitely the process of just being there together and listening to each other. It’s wonderful watching someone smile as they remember a picnic they went on as a child when they buried their shoes in the sand and then couldn’t find them. Or the time a man started to talk about his life as a farmer and how long he spent singling turnips. There have been tales about cakes and soup and stories that are not to be repeated! There has been laughter, smiles and sometimes tears. But these sessions have been bonding and helped us get to know each other and ourselves and remind us that we are all individuals with stories to share.

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Just say Hello! by Magdalena Schamberger

This is a lovely piece of writing by our creative facilitator Magdalena Schamberger. It’s about connection and the difference that even a small ‘smile’ or a simple ‘hello’ can make.

 

“I live on Leith Walk in the centre of Edinburgh. In spite of the current social distancing measures, it can be quite busy on the Walk, with people out shopping and having to form orderly queues on the pavements before being permitted inside the supermarkets. Naturally, people are also out for exercise hikes, runs and cycles and taking their dogs out for a walk. One thing I have noticed over the past few weeks is that, as well as physically distancing, people seem to have stopped looking at each other and have started shunning eye contact altogether. It appears that by trying to stay safe and avoid ‘the virus’, many of us are carefully manoeuvring our individual paths away from any sort of eye contact. I was thinking about this while on my daily exercise walk the other morning. Although I live with my husband and son, I was craving human contact outside our little family. I was watching people walking past me, mostly with eyes pinned to the ground, not only circumventing me physically, but also within their regard. The avoidance and lack of acknowledgment made me not only feel a little lonely, but also strangely ‘other’ and apart. I was wondering what would happen if I would actively look for eye contact with passer-byes and purposefully try to make connections. When I facilitate creative workshops, I often use an icebreaker that focuses on eye contact and human connection. First, I ask people to move around the workshop space, noticing their surroundings, but avoiding any eye contact with the other participants. Step 2 asks everybody to take only a fleeting glance into the eyes of a person walking past, before looking away again. Step 3 encourages to hold eye contact a little longer and add a tiny smile. Step 4 asks everyone not only to make eye contact, but to stop and make a physical connection by shaking hands. Until now, no words have been exchanged. By this stage I can usually sense everyone’s eagerness to speak and when we arrive at step 5 and I give permission to not only make eye contact and shake hands but also to say ‘hello’, a torrent of words and emotions are released. Although workshop participants will frequently not have met beforehand, they find it quite easy to have a conversation from that point onwards. I often add a final step, in which I ask participants to build on the eye contact and physical connection. I ask them to look at each other, mindfully, and notice one unique thing about their partner, point it out and pay a compliment about this. It is quite incredible, how positive this makes people feel to search the other person’s uniqueness and to hear about their own. Many find it easier to pay a compliment rather than receive one, but that’s another story… I was thinking about all of this during my exercise walk and started a little experiment. I began by glancing at fellow pedestrians coming towards me from the opposite direction. I commenced catching people’s eyes in passing with a bit more purpose. With the next person, I prolonged the eye contact and added a little smile. People started smiling back. I became more courageous and began adding a ‘hello’, which, to my surprise, was returned 9 out of 10 times. I instigated small comments, like, “What a gorgeous morning” and, “You have picked a beautiful spot for a rest” and started to have short conversations in passing. I noticed myself noticing more and more people. With an ‘open’ face and smile, people were engaging with me, with and without words. I realise, of course, that if you live in the countryside, this may be a bit more usual than here in the city centre of Edinburgh. Once I began noticing others, I could not stop. I started to see more people and more details about them. I looked up and saw three people standing at a first-floor window looking out onto the street. The person in the centre, a little older than the other two, appeared a little more fragile with a familiar, slightly confused look. Without hesitation, I raised my arm and waved, calling out a big hello, which was immediately returned to me with three beaming smiles and waves of helloes. I could feel my own delight and joy growing. My eyes were no longer pinned to the ground looking at the cobble stones, but were looking for people, buildings, details,… I was noticing and being noticed. I was seeing and being seen. I was surprising myself and others, smiling together. From my previous work, I know for sure that laughter is the shortest connection between two people. I realised how much I am thriving on these connections and how much I miss them when I am deprived of them. I believe we all do. I realise that you might be one of the people inside the window. Please know that we see you. Let us be respectful of each other, but not avoid being present for each other. Let’s give each other a small dose of connection, from time to time, in this viral space.”

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Reflections on missing those not met yet

This week would have seen the launch of the BOLD project in Ayrshire and Arran. We had planned to hold the first Taste of Leadership session on Tuesday 5th May.

Last November I attended Life Changes Trust Community and Dementia Conference at Ayr Racecourse and saw, first-hand, the wonderful array of work and activities that take place in the Ayrshire and Arran area for people living with dementia. I have no doubt that if Covid-19 did not exist, this week would have seen the emergence third strong cohort of people to the BOLD project; people who are passionate about making a positive contribution to dementia world and who are keen to find creative ways to develop their leadership skills in this world.

I was looking forward to meeting and working alongside the people from Ayrshire and Arran. I had already discussed the BOLD project with several people doing some fabulous and creative work in the area and they were excited about BOLD coming to Ayrshire and keen to know and learn more about it.

I find myself this Saturday morning wondering who else might have been keen to come along to our Taste of Leadership session. I wonder who the future BOLD leaders would be, the bonds and connections that would have been made between those that came along and I wonder what they are doing right now.

Whilst my original work schedule would have seen me at the Taste of Leadership workshop, I found myself planning a regular online dementia singing group for my local area through my parish church. As I was doing so, I was reminded of the number of different people who are continuing to find ways to support the flourishing of people living with dementia in these changing and challenging circumstances. People are finding ways to connect through technology, phone calls, dropping off food and prescriptions and gathering and delivering different activities for people to engage in from home.

Listening to the dementia diaries I see that some people living with dementia are finding ways to meet via regular zoom chats and there is an emergence of other social groups and meetings moving to a virtual platform. We are seeing a tremendous effort from care home staff who are working tirelessly not only to support the physical health of people living with dementia but also their emotional and mental health as family members and friends are not able to visit just now.

As I think about the people that I would have met this week at the Taste of Leadership workshop, I find myself feeling a mixture of emotions. I feel sad that we have not yet come to know each other better, to share our experiences and learn together. I feel sad for the bonds and connections that it has not been possible to make. I am missing people that I do not yet know.

However, I also feel encouraged, heartened, and hopeful as I think of and see all the new ways people are finding to continue to make a positive difference and to encourage flourishing as we live with dementia.

Whilst I am very aware of the pain and challenge that this time of lockdown is bringing, I am certain that as we all work our way through this in different and creative ways we will be able to learn a great deal from each other and from those of who continue to make an extraordinary difference in the lives of those living with dementia.

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How Can We Flourish When It Hurts?

The focus of BOLD is on finding ways to support people living with dementia to flourish, so that having dementia makes no difference for who we are as people and how we live our lives.

I am always excited and encouraged when I spend time with people living with dementia as we discover the different creative ways in which we can all flourish.

Throughout the dementia journey however there can be challenging and difficult times. I am often asked whether we can realistically flourish whilst living with dementia, especially during the times when life might feel particularly difficult and painful. This is an important question and one that even more people are thinking about just now as we live through the current coronavirus pandemic and the extra layer of challenge and uncertainty that this brings.

Before COVID-19 took hold in the UK, I spent some time exploring some of the difficulties that the dementia journey might bring and how we could find a space for flourishing within the difficulties. I explored the changes that dementia might bring in terms of the way it can affect the way a person feels, thinks and behaves and the profound psychological and physical changes that the person with dementia might experience [1]. These changes can often be experienced as a loss to both the person with dementia and those who love them [1,2] and are sometimes described as a sense of “living grief and bereavement” [3, p1].

The changes that dementia brings can lead to a change in the shape of the relationship between persons with dementia and those close to them. The way in which people with and without dementia may chat and communicate with each other  may change. There could be a loss of intimacy in the relationship and the things that were planned for a future together may no longer be possible. Some people might find themselves worrying about what the future might hold.

As a person journeys with dementia, there will be an increasing dependency on others to care for and support them physically, emotionally and spiritually. Often much, if not all, this care is provided by those who are emotionally close to the person with dementia. Alongside the increase in practical care, those close to people with dementia often find themselves experiencing a sense of loss, grief and worry. This can be overwhelming for those who dedicate their time and energy towards caring for their loved one [3, p5]. Grief and loss can be a “major difficulty” for those who care for their loved one with dementia [4, p4].

The academic literature describes this sense of grief and loss in several different ways. Some of these are:

  1. Caregiver grief –  The experience of “multiple losses within the context of caregiving”. This includes the anticipation of losses in the future that relate to the “physical death” of the person with dementia [5, p1].
  2. Pre-death grief –  The “emotional and physical response to the perceived losses” [1, p2203]. It can come and go throughout the dementia journey and manifest itself in a range of emotions such as feeling angry, sad, a longing for the way things were, and an acceptance of the situation [1].
  3. Anticipatory grief – The process of the normal phases of bereavement “in advance of the loss of a significant person” [6, p1]. Anticipatory grief is often manifested as the “mourning, coping, planning and psychosocial reorganization” that are triggered as we become more aware of a future loss, and losses in the “past, present and future” [6, p1].
  4. Disenfranchised grief – The “losses that are not recognised by others” [2, p17]. When grief is disenfranchised, those who are grieving are understood by others as having no right to mourn or feel grief. The grief is not acknowledged or shared by others, and not socially recognised. When grief is disenfranchised it is not given validity or supported because others cannot understand what is being lost and mourned [2].

As I explored the experience of grief and loss in dementia, and the pain that that might bring, I recognised that it is sometimes difficult to talk and think about flourishing. The current pandemic seems to have made it even harder to think about flourishing, not only as we live with dementia but as we live with the additional roller coaster of emotions various types of grief that this crisis brings.

I know I am not alone in experiencing fluctuating emotions of fear, anxiety, and sadness, balanced somewhat by profound moments of deep insight, calm and joy as COVID-19 has taken hold. Moving from face to face contact to contact via social media, the telephone or online video calls, the shape of our relationship with others is changing. There are times when I feel socially isolated and am missing the physical touch and presence of other human beings, being able to shake someone’s hand or give my friends and family a hug. There are times when I feel like I am grieving my “old” life and routines and my way of being.

To think about human flourishing really does feel even more difficult just now. Yet as I pause and reflect I notice that my faith in the human spirit, and our ability to adapt and respond to changes drives me to believe that we can grow and flourish not only through the dementia journey, but through this time of crisis.

Flourishing means helping individuals, through our relationships with them, to maximise their potential so that they can achieve their potential to continue to grow and develop [7]. This growth, development and flourishing is often found as we pay attention not only to the times when we, and others, feel strong and in control of our lives, but also to the times of fragility and uncertainty. Times where one might feel in a place of weakness, sadness, grief or loss, and authentically acknowledging these painful and difficult times.

In recognising, acknowledging our own living grief and supporting others through their living grief, we are often able to find moments of beauty, joy and growth.

Titchen and McCormack [8, p65] write that:

.…Human flourishing is an eco-system of balancing life-death-life.

Creating conditions for interdependency and the losses and gains of each position

Fragility and strength – strength and fragility.

Dynamic Balance.

They suggest that:

“growth emerges from unexpected places when we really pay attention. In the midst of what may seem dead or murky and tangled with no space to move or breathe, the energies for growth and flourishing spring forth” [7, p9].

In our human journey we often grow and flourish in times of grief and suffering as well as in moments of joy. If we deny the times of grief, difficulty, and loss, then we are in danger of denying the reality of life itself.

Flourishing and growth needs to emerge from a place of authenticity and “inner knowing” [7, p3]. It is in the disenfranchising and not paying attention to our own grief and the grief of others that I think human flourishing becomes impossible.

A saving grace for me during this time of social distancing has been my fortnightly online zoom meetings with my local mental health peer support group. It is a time where we all come together and acknowledge how hard we are finding things and share our different coping strategies. Whilst it can sometimes make us feel vulnerable to open up to others about how difficult we find things some days; we often end up learning so much from each other and regularly end up in fits of laughter too. I notice in these groups that we are all openly acknowledging our grief, our sadness and sense of loss and we are all being authentic about that rather than trying to sugar coat our feelings. It is through this authenticity and vulnerability that we support each other, acknowledge our losses, admit our fragility, and find our strength, our “energies for growth” and we notice our gains. It is in this time of authenticity and vulnerability that our energies for “flourishing spring forth” [7, p9].

Embracing our difficulties, vulnerabilities and fragility can open the door to human flourishing and be a gateway to experience moments of deep growth, creativity, beauty and joy. As we continue to journey with dementia together through and beyond this pandemic, we can continue to find ways to support each other to maximise our own potential and flourish in both good and difficult times. We can BOLDly continue to find ways to make a positive contribution and difference in the “dementia world”.

References:

  1. LINDAUER A., HARVATH, A. (2014) Pre-death grief in the context of dementia caregiving: a concept analysis. Journal of Advanced Nursing. Vol 70(10), pp.2196-2207.
  2. DOKA, K.J. (2010) Grief, multiple loss and dementia. Bereavement Care. Vol. 29 (3), pp15-20.
  3. TIDE (2019) Living grief and bereavement A booklet for carers of people with dementia. Life Story Network CIC.
  4. FRANK, J. (2009) ‘Anticipatory and disenfranchised grief among dementia family caregivers: helping spouse and adult-child caregivers to cope’ IN: HUGHES, J. LLOYD-WILLIAMS, M. SACHS, G. (Eds). Supportive care for the person with dementia, Oxford: Oxford University Press. pp207-215.
  5. LIEW, T.M., YAP, P. (2020) A Brief, 6-Item Scale for Caregiver Grief in Dementia Caregiving. The Gerentologist. Vol 60(1), pp. 1-10.
  6. GARLAND, L., LINGLER, J.H., DEARDORF, K.E., DEKOSKY, S.T., SCHULZ, R., REYNOLDS, C.F. AND DEW, M.A. (2012). Anticipatory Grief in New Family Caregivers of Persons With Mild Cognitive Impairment and Dementia. Alzheimer Disease and Associated Disorders. Vol 26 (2), pp.159-165.
  7. MCCORMACK, B. TITCHEN, A. (2014) No beginning, no end: an ecology of human flourishing. International Practice Development Journal. Vol 4 (2), pp1-21.
  8. TITCHEN, A. MCCORMACK, A. (2008) ‘A Methodological Walk in the Forest: Critical Creativity and Human Flourishing’ IN: MANLEY, K., MCCORMACK, B. WILSON, V. (Eds). International Practice Development in Nursing and Healthcare, Oxford: Blackwell Publishing Ltd. pp59-83.

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