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.

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.

On Thursday I caught up with some of Bold’s creative partners at the launch of Encounters – flourishing with art, a new book created with and for persons living with dementia by Art in Healthcare. The launch was part of the 2019 Luminate Festival of Creative Ageing, which ran throughout May with events extending the length and breadth of Scotland. Encounters was just one of many dementia inclusive events in this year’s festival. This event was such a lovely illustration of what our creative partners are capable of that I thought I should write about it and what creative partnering means for Bold.

Bold contends that everyone should be able to flourish throughout their lives. Our approach focuses on creating the conditions for all persons to flourish, as both a process (way of working) and as an outcome (each person’s experience). Flourishing with art sits at the very heart of our efforts. We’ll be using art-based methods in our work for several reasons. Perhaps most obviously, they can encourage imagination, creativity and innovation. This can open up different ways of seeing the world, de-familiarising the ordinary and taken for granted and drawing attention to contradictions, unfairness and even some of the cruelties buried in everyday life and in society as a whole. It can help people to see that there are other, better, possibilities.

Arts-based methods also provide different ways of sharing experiences, making it fun and enjoyable for all. They can challenge some of the bleak and solely negative assumptions about life with dementia, and can also deliver laughter, friendship and support to help people deal with any anxiety, fear, confusion or sadness that their situations may bring.  This in turn can help build personal resilience and inject more playfulness and energy into the things people do. As a result, people may feel more able to take these methods back to their own homes, communities and workplaces, increasing confidence in using creativity as a tool for building trusting and meaningful relationships. Importantly, arts-based methods extend opportunities for the continued expression and involvement of persons with dementia should words become harder to find, building observational and non-verbal communication skills in novel ways and increasing confidence in their use. Finally, arts-based methods can generate provocative outputs that stop observers in their tracks and offer innovative and compelling ways to celebrate achievements and showcase them to others, such as through the series of events and annual exhibitions that Bold will hold.

Given the importance bold attaches to flourishing with art, we are fortunate to be collaborating with partner organisations and individuals with particular expertise in using different art forms in dementia inclusive ways, such as LuminateArt in HealthcareMagdalena Schamberger, pictured in the featured photograph. In this blog I’m focusing on Art in Healthcare, whose mission is to humanise and transform medical and healthcare environments across Scotland. Initially this transformation mostly took the form of building an art collection from which pieces could be lent for display. As the art collection continues to grow, with installations in new locations across Scotland, Art in Healthcare is challenging assumptions about the sort of artwork that should be displayed in healthcare settings, moving away from conventional and rather safe paintings to include more abstract and provocative works. Diversifying the collection has extended the possibilities for using art to explore personal creativity – something at the core of Art in Healthcare’s ‘Room for Art’ workshops. The workshops and art exhibitions serve to maximise the health and wellbeing benefits of engaging with art. As Art in Healthcare’s activities have diversified, they have also developed expertise in working in dementia-inclusive ways. Encounters is the culmination of these developments.

Encounters is a unique resource, in essence a portable art exhibition. The book has been designed through a process of experimentation, working with persons living with dementia over time to discover personal preferences and responses to different images. Guided by professional artist Heather Lucchesi, Director of the social enterprise Light Bulb ArtsEncounters has involved the careful selection of 20 images which, together with accompanying prompt questions to which there is no right (or wrong) answer. The images and the questions can evoke memories, but importantly they don’t have to. They have the potential to stimulate conversation, spark the imagination and provide a focus for conversation and being creative.

Many of the images that feature in Encounters were on display at the launch, together with accompanying exhibits. The above photograph was taken in front of one exhibit – an image called ‘Neighbourhood Watch’ by Edwina Jill Wilkie, together with a washing basket, clothes peg and line, the caption ‘A good washing day’. Pictured in the photograph from right to left are Anne O’Connor, Chief Executive of Art in Healthcare, Rebecca Leary, Festival Marketing and Programme Officer at Luminate, Scotland’s Creative Ageing Organisation and independent creative collaborator, Madgalena Schamberger, who was taking a short break from the tour of her latest theatre production, Curious Shoes – a joyful performance that provides an opportunity for persons living with dementia to see a high quality piece of theatre without it being a worrying or stressful experience for them.

These collaborators are all using art in highly innovative and dementia inclusive ways – offering persons living with dementia chances to be creative, to be seen and to be heard. In so doing, each is challenging perceptions of what persons, including persons living with advanced dementia, can do. I look forward to further encounters with our bold creative partners, to working with and learning from them and ultimately, to flourishing with art.

Bold is looking for all sorts of new and emergent leaders from all walks of life and from across the whole of Scotland. Over the coming months we’ll be sharing stories by people who are already making a difference in the ‘dementia world’ in lots of different ways. In this blog, Paula Brown, co-ordinator of the Cianalas dementia friendly community project at An Lanntair arts centre in Stornoway, describes what leadership means to her and what this looks like in everyday practice.

A Day in the Life of… Paula Brown

Cianalas is a Gaelic word, which does not have a direct translation into English, but is associated with belonging and a warm feeling of the Hebrides as home. It relates to the Gaelic language, culture, music, dance, food, the land, sea, sky, the people and the heritage of this incredible place. The Cianalas project sits within this bilingual community.

Leadership, for me, in this role, means walking a mile in the shoes of the community. I moved to the Isle of Lewis only five years ago. Having never ‘carried the peats home for the winter’ or ‘split herring with my hands’, leadership is about getting to know the community. It’s about understanding island life, heritage and people and maintaining relationships in order to hear the voices of everyone, especially those without the use of speech and those seldom heard voices. Leadership comes from all of us, together. And I’m privileged to hold a position of facilitator for this community.

A Day in the Life of Paula Brown

A Day in the Life of Paula Brown

The core team also comprises a freelance Gaelic Co-ordinator Maggie Smith, Artist Practitioner Duncan Mackinnon and Curator Jonathan Macleod. With massive support from technical support, marketing, finance, programming and management, we collaborate widely across the community with teams from the NHS, museum, library, care centres, day centres, Alzheimer Scotland, universities, individual artists and many more.

I thought it might be best to show you this project work through ‘a day in the life’ because just one day gives quite a good snapshot.

28th June 2019

9am: In glorious sunshine, we arrive at the Grianan Centre in Stornoway. Today ‘we’ comprises myself, a colourful group of four performers from the play ‘Curious Shoes’ and its Director, Magdalena Schamberger. I saw the play twice the day before in two care centres, but I’m looking forward to seeing it for a third time, not least because the audience participation makes each performance so unique.

There had been a quick change of venue the previous day because of a sudden venue closure but, thanks to the strong working relationship we have with different groups locally, it was possible to quickly pull together everything required for the next day.

As the performers put together the touring set and warmed themselves up, Magdalena and I chatted about the previous performances. I spoke about what I’d noticed over the past two days in people’s responses and facial expressions and that the opportunities to process emotion through the themes of the play, without words, is so very valuable.

Dance Scene from Curious Shoes

Dance Scene from Curious Shoes

I also enthused about how the research aspect of this Cianalas project has been supporting personhood, communication, bilingualism. I talked too about how our recent work with Science Ceilidh offered time with neuroscientist Lewis Hou, giving everyone an insight into the benefits to the brain of bilingualism and music.

10.30am: As the performance started, musically and playfully, the audience engagement was immediate – and very exuberant! As the gentler sections unfolded, everyone remained engaged and followed the pace of the play, settling into more emotional themes and opportunities to handle objects. Each time music was introduced, there was a lot of leaping up out of chairs and dancing, and at times the audience became joyful performers too. The skill and experience of the cast was perfectly suited to seamlessly working with unexpected situations playfully, to include the person and still deliver the section of play.

Audience Members Join the Cast of Curious Shoes

Audience Members Join the Cast of Curious Shoes

Brilliant, brilliant work and just how we work in the community. We all received an enthusiastic thankyou from the centre manager and a hearty welcome back!

12 noon: As the Curious Shoes team packed up to catch the ferry to Ullapool, I made a quick dash to a local art supplier and to the supermarket to get what was needed for an afternoon art session for Care Home Open Day.

Arriving at a local care centre, I found artist Margaret Ferguson working with residents who were creating still life artworks. (Did you catch Margaret’s outstanding Iolaire 100 portrait project, where she painted the faces of 100 of the men on the Iolaire, which tragically sank on New Year’s Day in 1919?). While she worked, I spent some quiet one to one time painting and drawing with residents who needed more personal support. We begin Margaret’s next project today, drawing people’s portraits as she chats with them. We take quality arts materials and a pot of flowers to a lady who is in her bed at the end of the corridor. We had recorded her voice the last time we visited. ‘My father sailed with Captain Scott, on the Discovery’ she recalled. ‘I used to enjoy art, but I can’t grip so much now.’ I offered her a set of chunky oil pastels, a pad of nicely textured paper and a small canvas ‘for when you feel braver’.

I had to dash away to meet a reporter from the local Gazette newspaper, but I received this gorgeous email later from Margaret: ‘I’m attaching photos to give you an idea of what I’d like to use for the project. She (the lady) was amazing, sat drawing flowers for 20 minutes. The staff are going to forward them to her daughter on the mainland. The power of art!’

And the images were gorgeous too!

Drawing of Pot of Flowers

Drawing of Pot of Flowers

I make my way to a quiet room where the interview with the reporter can take place, rushing past the vinyl on the wall, a ‘window’ onto Stornoway Harbour put in place through a ‘DEEP’ grant that enabled us to work with a local man to share his story of ‘Lazy Corner’.

3.30 pm: As I chatted about the project to the reporter, I suddenly became aware of how much is happening as she scribbled furiously in her notebook, trying to keep up. I didn’t even get to mention the recent ‘Eyes As Big As Plates’ international photography project we were involved in as part of the Luminate Festival, as we were so busy talking about what is coming up. This includes a play production for September, Travelling Gallery for Barra and the Ben Nevis Ensemble for the hospital. Mostly I spoke about how we share the arts programme, festivals, evening classes etc. with people who wouldn’t otherwise be able to access them.

We also spoke a little about working with PhD student Lucy Robertson from Duncan of Jordanstone, and how we will be ‘craft bombing’ An Lanntair and East Lothian in July. This will serve to maintain friendships between the two dementia friendly groups, and to recognise that dementia isn’t just about our pasts, and we all have a present and a future too. To showcase the project, we are creating interactive arts pieces for the public of all ages to engage with that play music, light up and change colour using soft circuits, local textiles and marine waste.

We finished the interview by talking about the geographic spread of the project, including the Woven Communities work we have carried out with the University of St Andrews in Uist (we have contributed to an academic book coming out shortly with Bloomsbury about this work), and the work of Duncan, our Artist Practitioner in Barra. Duncan is a Ceilidh musician and photographer who offers local traditional music to the communities of Barra and South Uist. He has been working on a men’s group and a transport memory box initiative to join the four memory boxes we have already created as a community, distributed by the mobile library service.

4.30pm: Then I was driving across twenty miles of moorland to a community centre in Borve to meet choreographer/ dancer Louise Davidson to talk about her part in a new play that we are working on with a local writer. The play is showcasing the research that a man has undertaken to manage his own cognitive impairment through AI, specifically with ‘Alexa’. Louise is choreographing a dance section of the play, and we plan the next two meetings and read-throughs on stage.

6pm: Arriving home, I go through my emails to keep everyone on track and informed about the play, then do some social media work on InstagramTwitter and Facebook before uploading recent images to our blog server to include in a newsletter later. I note down the numbers of attendees at the recent sessions for a forthcoming spreadsheet, due to my line manager by the end of the month, and start on a blog post for the main An Lanntair website. I read and answer emails about the future funding of the project and complete the planning and booking for my next work travel, which will be on the ferry, and a tad challenging because it’s around ‘HebCelt’ Festival time, when the ferries are busy.

To wind down in the evening, I find myself knitting socks – a skill taught to me by several local ladies, mostly Mary Kate, a Harris woman now living in a care centre in Leverburgh. My early attempts were met with quiet encouragement, but my latest offerings have been met with hearty approval! I’ve graduated to the Hebridean Sockmaker’s dizzy heights of craftswomanship (well, almost!).

I hope this snapshot has given you an insight into the Cianalas project and the work we do. It’s busy, but we achieve a great deal with a small team. It’s not your usual nine to five!”

The Cianalas project is funded by:

Looking for all sorts of leaders
Are you a leader in dementia? Why not tell us about about what leadership means to you and the work you do, perhaps by describing a day in your life.

Email: info@bold-scotland.org.uk

We’d love to hear from you!

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