The pandemic has impacted the healthiest and fittest of us in society. This interview considers what people living with a disease such as dementia might be facing amid the presence of COVID-19, and how music can help.
Lucy Temby is an Australian-born singer, and the enterprising founder of Sound Up Arts. Her UK-based company provides music resources to aid dementia patients.
Her persistence and commitment to this work may now be more impactful for dementia patients than ever before, in a world where the elderly are suffering from lifestyle adjustments, panic, confusion, and isolation.
Describe to me what you do as Community Arts Creative Producer for Sound Up?
I established SoundUp Arts in 2018 after graduating from a Masters degree at the Royal Northern College of Music. SoundUp developed out of a social entrepreneurial grant, which enabled me to run our first project centred around making opera accessible for people living with dementia. I wanted to share high-quality musical experiences with people living with dementia, and this funding allowed me to run a month-long workshop series, which brought the RNCM opera production into a care home. I worked with the opera students, and production department, bringing elements of the show to life for local residents. From the outset we understood that accessibility was a very important element of these workshops, and this really enabled us to be creative and really flexible with the way we presented the music and production elements. The workshops involved sing-a-longs, movement and dance sessions, prop and costume sensory work, themed visual arts activities and interactive performances. The experience was pure joy, and it was so encouraging to get incredible feedback from the participants, the care staff, relatives and also the early-career singers.
From this first grant, SoundUp grew and developed over time. We now are a registered Community Interest Company and have three amazing female arts and health specialists on our advisory board. We have a brilliant collective of early-career artists, who are all trained in specialised music for dementia facilitation. Our musicians work with us to bring live and digital music-based participatory projects to people living with dementia in care homes and the community. As a small CIC, we are very lucky to have the flexibility to develop our work responsively, enabling us to meet the needs of our beneficiaries. We run participatory music workshops, interactive concerts and dementia choirs. We also produce digital music sessions for people living with dementia, enabling people the opportunity to continue to engage in personable, interactive music making from their own homes or care homes.
My role very much strikes a balance between the artistic and the strategic aspects of managing a CIC. I feel very fortunate that I still spend a lot of time working as a musician with people living with dementia, and every week I have a chance to run workshops, singing sessions and choirs. However, my role as creative director also means I am responsible for the general running of the CIC. I love working alongside the advisors and artists to develop our strategic planning, and a lot of our work also is influenced by our beneficiaries directly, inspired by their requests and needs. Developing partnerships, managing funding, monitoring and evaluating our work, and developing our projects are all things I do in my role as creative director. Every day with SoundUp brings new opportunities to share music, bring change and impact on wellbeing within our community. I feel very proud of what we have achieved through SoundUp, and excited for what we can create going forwards.
When do you recall first meeting a person with dementia?
Unfortunately there is still a lot of stigma surrounding dementia. It is a disease which is not commonly spoken about or understood. My first experience meeting someone living with dementia was when I was studying. I was interning at an Opera company and was involved in a community music project with them. I was very lucky that my first experience really opened my eyes to the power of music as a tool in dementia care. After that project I went on to volunteer at a local dementia charity Together Dementia Support, in their weekly music group. It sounds quite extreme, but that experience really did change the course of my life. I met a group of wonderful people who were funny, honest, outgoing, open and living with a brain disease. Making music each week with them was rewarding and incredibly fun, and unlike any other musical experience I had across my 6 years of training. Getting to know and really care for this group of people and their family carers meant I really never experienced stigma towards the disease, and from the outset I learnt how important it is to see a person for who they are, rather than approaching of them solely as a person with dementia. I learnt this through volunteering, and it really impacted the way I work and the career I ended up going into.
When was the moment you realised music could have a profound effect on a person with dementia’s life?
I actually do remember the exact moment. I was running our first SoundUp project in a care home for a group of 12 people living with dementia. There was an elderly man in the group who was very impaired. He had very limited mobility and was unable to communicate verbally. He wasn’t able to tell me his name when I introduced myself at the beginning of the session. At the beginning of the workshop he wasn’t focused on activities, and didn’t respond to any verbal cues or questions. We got to our first interactive performance of the session, which was sung by one of the RNCM opera students working on the project. She sang the Habanera from Bizet’s Carmen. For those who aren’t familiar with the piece it has a very strong syncopated rhythm throughout the accompaniment. As soon as the pianist began to play it, this elderly gentleman started to hum along to that rhythm. The care staff were really shocked to see him engage in this way. As he sang, his eyes began to water and tears streamed down his face. He was so connected and engaged with the music, and it brought up some powerful emotional memories for him. When the song finished we all applauded him and the opera singer as a duet, and then the whole group learnt the syncopated rhythm and sang it again with him a second time. Since that first ‘magic’ moment I have been fortunate to witness countless more instances where music has had a profound effect on a person living with dementia. I have seen music enable people who do not speak, to sing and then continue a conversation. I have seen it calm and reassure a lady with delusions and severe anxiety. I have seen it inspire a man with severe mobility difficulties to dance and move. Music moves people in big and noticeable ways, but even the tiny effect make a big difference. Often the most rewarding outcomes are the tiny details we see; the recognition of a meaningful song, tapping a foot, raising a head, opening eyes or encouraging a smile. There is a wealth of evidence and research supporting the effects music has on increasing the wellbeing of people living with dementia. I have seen firsthand how important music can be in restoring self-esteem, increasing communication, enabling choice, boosting identity and connecting us with others.
Given the wealth of evidence that music has outstanding impacts on people living with dementia, why do you think so few care homes involve music in and arts as regular activities?
It is a very difficult question, and one which really needs to be addressed. Of course, there are issues of finance, funding and the way money is spent. The care home ecosystem is complex, and often, beyond financial barriers, there may be roadblocks to music provision that occur due to issues with staffing, time management, safeguarding, and a lack of organisational buy-in. In saying this, I have had several very positive experiences working with passionate and supportive staff teams, who understand and champion the role music has in dementia care. Unfortunately, however, I think there is a wider issue concerning the undervaluation of music and the arts by governing bodies and society as a whole. The research and evidence is there, however it needs to be validated and actioned across social care by people who have the ability to make significant change in the healthcare sector. My work has enabled me to meet like-minded practitioners and leaders in the health and social sectors, and I am optimistic that things will change, we need to keep raising awareness and be a vehicle for the voices of those with dementia so that they can be heard.
Currently, in the UK only 5% of people living in care homes have access to music and art. One way that SoundUp is trying to tackle this issue is to ensure that we work in a way which prompts legacy. I am a big believer in creating sustainable practices, so part of our work also aims to upskill carers and health workers, so as to increase their confidence in using music as part of care regularly. For this reason, SoundUp runs specialised music for dementia training and creates resources and tools which aim to enable carers to run their own participatory music sessions. I believe that upskilling care staff to use music effectively with people living with dementia is a worthwhile investment. I also know that ensuring musicians are specially trained in music for dementia will make a big difference. I hope that ‘outreach’ becomes more integrated into the music curriculum, and that it is offered more widely across higher education in the arts. By offering more training and developing the relationship between health and arts practitioners, there will be a valuable payoff to the wellbeing of those in care settings. I really believe music and art should be intrinsic to dementia care, and by increasing the confidence of both carers and artists to use music as a tool to wellbeing, we will be able to steadily improve on that 5 percent statistic.
What opportunities do we have with digital technology (Zoom etc) with regards to participatory music? (I find so inspiring what you’ve done with Creative Cast/Online Tools etc!)
Of course Covid-19 has disrupted a lot of artistic work and had a huge impact on live music in care homes community settings. We knew immediately how detrimental that would be to people living with dementia that we work with, we heard from care homes in crisis, who asked us to help them continue musical provision across the months of lockdown. We were very fortunate to be able to quickly divert some Arts Council England Funding (meant for a live workshop tour in care homes) into a digital music programme called the SoundUp CreativeCasts. These were a series of 8 interactive music and creative arts sessions which are available online. This was our first digital project and is currently running in 15 care homes (in the UK and Australia). We received wonderful feedback from one of the homes using the programme which really highlights the impact music can make;
“Still watching your Creative Casts! Household Juniper just love them all!…No words. It is like watching a clockwork doll being wound up. The minute she hears your “Hello” song she is off! No recollection of watching now many many times and enjoying every single minute. I cannot thank you enough for putting them together …... We have a new lady on Juniper, very unsettled and suffering from deep anxiety. This lady will sit and interact with you for the duration.”
We recognise that digital technology can be very useful for care homes, and we currently developing a recorded music session resource for care homes called WellSinging, which is an hour-long interactive singing session, with recorded facilitator cues, enabling any carer to facilitate a high-quality music session without any other equipment needed. We also are currently working on three other digital projects involving several of our SoundUp Artists. The first is a musical wellbeing video series, inspired by the 5 ways to wellbeing called TuneUp, the second is an interactive sing-a-long Music Theatre mini-series, and the third is a music and visual arts interactive concert series called SoundArt. During July, nine of our SoundUp Artists ran online concerts, which raised money for SoundUp and also directly supported our artists, most of whom have lost so much work this year. Following the live streamed concerts, we collated a video from each artist and sent a special concert montage DVD to 40 individuals living with dementia in the community and several care homes we work with. We have run two of our specialised music and dementia training sessions over Zoom, which adapted really successfully to an online session. During lockdown 25 health care staff, musicians and community workers have joined those two sessions from Australia and across the UK, and we have just had further funding to run another 2 sessions in September, which will be free for any care staff worker in Manchester.
During lockdown I have also been running some digital music initiatives for the charity Together Dementia Support. For the past 5 months I have been singing with a lady with dementia over Facetime, twice a week. Her carer commented that the singing sessions have been so helpful to them during lockdown and that his wife becomes like the person he used to know after our sessions. We have also been running Facebook live sing-a-longs each week, which have been a lovely way to stay connected with our group through a special live session on a weekly basis.
One issue we found however, is that several care homes and households did not have WIFI, or the technology to share the resources with residents. We worked around this by raising funds to purchase tablets that we preloaded our session videos onto, to lend to care homes. We also managed to get funding to produce DVDs and booklets of our CreativeCast programme, increasing the accessibility of the programme for a wider range of care home and community set-ups.
How can the everyday person support Sound Up, and why do you think they should?
Raising awareness is always a fantastic first step; share this article with others, have a look at our website, follow us on social media and keep up to date with what we are doing. You don’t need to invest your money to show your support, and we are very thankful to community members who support us through their actions. Of course, for those who are able, another impactful thing you can do to support SoundUp Arts is to donate on our website. We are committed to producing high-quality work, ensuring it is accessible to our beneficiaries, and paying our artists professional wages. We feel passionately that every person living with dementia should have access music and art, and for this reason we rely on funding and the generosity of patrons to subsidise our artistic costs, ensuring that our projects, resources and training is affordable for those who need it. We believe that music for dementia is worthy of investment, no matter how small. As an organisation we know our value, and the impact we can have with the help of our community. As an individual you can make a change through your actions, your recognition and your support.