Andy Nazer, Campaigns Manager, Campaign to End Loneliness
This blog will go beyond the physical consequences of Covid-19 and examine the potential dangers of loneliness and social isolation for older people with dementia and their carers.
It will also explore how services and communities are adapting their offer to meet this new challenge, with some reference to music provision.
Music creates escape and freedom. It brings us together, reconnects us with our emotions, and it can help free a person from their dementia. It liberates, connects us with each other and ourselves and in these distressing times, that’s critical. Music is many things, “the food of love” being just one of them. It unites us and holds us together across time and space. And, oh yes, you can dance your socks off to it!
My friend Beryl is 82. When lockdown arrived she suggested a great idea she had. Older people should make a space where they could do a daily dance. Or several, depending. “I’ve put together a list of my favourite dance tunes and each day I twist, jive and shimmy away to a couple of my favourite tracks, in the kitchen!” And so she does.
Might the fear of isolation and loneliness be as great as the terrors of becoming infected with Covid-19? Many, particularly anyone over the age of 70, would say, NO! Risking infection is far worse. Hence the fear of being hospitalised, and the dread of care homes.
People of all ages have become familiar with loneliness in the lockdown. The ONS report that one-in-seven of us have experienced ‘lockdown loneliness’ intense enough to cause worry that it was affecting their wellbeing. The impact on the mind and emotions has yet to be quantified, but a report by the Institute of Fiscal Studies suggests that the proportion of people experiencing at least one mental health problem more than doubled – from one-in-ten to one-in-four.
It is certain that psychological damage will be widespread and varied from person to person, and age group to age group. Traumatic Stress Disorder, depression, hyper anxiety, social anxiety, psychosis, bipolar disorder, mania, paranoia? But let’s get away from clinical and dehumanising terms. Let’s use another set of words.
Let’s use words instead that have human faces, words that try to describe our shared emotions at the tragic destinies of the individual men and women who find, at the end of their lives, an awful, merciless end. And we are all at risk. So let’s include ourselves through empathy.
We should not forget the 1.2 million chronically lonely older people, mostly living alone, who are passing their days during this pandemic as they did before coronavirus and the lockdown arrived. No change there then. Except that lots will now be fearful, confused by the continuous flow of mixed-messages, mourning, reconnecting with loss from their past, often overwhelmed by pain and anguish. But now they are involved in our collective grief and will be finding some comfort and a greater sense of connection in this. They are being re-included in life.
Fatalities in care homes
Among those in the greatest of danger of dying from the damnable Covid-19 are the men and women living with dementia. A quarter of all fatalities from coronavirus also had a dementia diagnosis. They are among the most helpless, living in a disintegrating world in which communication slowly becomes impossible. This is the final isolation, and with it comes the deepest of loneliness. It brings with it the loss of meaning, the lost of self, the end of memory and an absolute solitude. And what is there for those who care for them? Occasional respite? Not during the lockdown. Why is it that those in greatest need of protection are those that get least?
Among the many disturbing events in the pandemic, the fatalities among people in care homes, unable to see and draw comfort from family members or friends, resonate most. Gavin Terry at Alzheimer’s Society said in the Guardian “We’re hearing that some people are ‘just giving up’ or ‘switching off’ and not eating or drinking.” Some psychologists consider that loneliness impacts in the same way as hunger and thirst. It’s a biological alarm bell. Our natural desire for social relationships drives us to seek out connection just as hunger urges us to eat.
The Campaign to End Loneliness recently convened an online gathering of 150 organisations to share their experiences of working to tackle loneliness during the Covid-19 lockdown. Many were struggling to survive a decade of austerity before coronavirus hit. These service providers have been remarkably fast and responsive to meet the needs of their community. We learned how arts and music projects are delivered at a distance; peer support groups are shifting to digital, and how the voluntary sector is pivoting its offer to provide emergency support for those shielding or self-isolating.
Individuals and communities around the country have created their own ‘micro’ hyper-local mutual-aid groups distributing food and providing a vital support resource, powered by personal commitment, determination and dedication. This is the uplifting spectacle of social alchemy in action. Lets hope, as doors start to open again, that much of it remains.
Yes, we all need different songs, and different drummers today. Music speaks across the years; it can bring laughter and tears. It summons positive memories and, as we’ve seen with initiatives like ‘Singing for the Brain’, helps create new ones. It builds bridges across our life, which reaches out, over the rainbow. “They’re playing our tune…” they say as a memory crystallises.
Music’s many forms are all around us. They bring us comfort beyond words. Its rhythms are the pulse of life, our heartbeat, we all share it.
Let’s remember what we’ve learned as we journeyed through this pandemic and what it has cost. Let’s hope when the opportunity next arises to connect with someone, we don’t hesitate to take two steps forward, rather than one step back. Connection is the key.
ONS Report – Coronavirus and loneliness
Guardian article – 10,000 extra dementia deaths – 05/06/2020
Andy has vast national and international experience of engagement, marketing, commissioning, and campaigning in the business, health, social care, political and local government sectors.
He started his campaigning career as a teenager organising concerts for Rock Against Racism and went on to actively work on a number of social issues and organisations including CND, No Nukes (USA), gay rights, Artists against Apartheid, Red Wedge, disability rights, smoking cessation, fuel poverty, children in care, later life and, for the last 10 years, isolation and loneliness.
A gap year in the USA working for NoNukes! led to a 25 year long career in the music and entertainment industry where he headed-up various organisations both in the UK and overseas working as an artist agent, promoter, manager, festival organiser, sponsorship consultant and merchandiser. His client list included Nina Simone, Frank Zappa, James Brown, John Lee Hooker, Ian Dury & The Blockheads, Tom Robinson, Curtis Mayfield, Gil Scott-Heron, etc., etc. “I was raised on soul” he says and by the end of his career had worked with most of the artists that had shaped his formative years.
He retired from the music industry and later launched a successful retail business in Greece and then another in the UK. Upon selling the business he was able to spend time in a more socially aware environment – health and social care, working in engagement, commissioning, and health campaigns, while at the same time becoming a foster carer.
In 2017, after a number of years as an Ambassador, he formally joined the Campaign to End Loneliness as the Campaign Manager for England. This role has taken him across the UK and overseas to speak about the issue of loneliness. He has appeared on a number of TV and radio programmes – making his broadcasting debut on Radio 4’s PM Reports aged 14 – and blogs for the Campaign and other organisations on issues surrounding later life and in particular, social isolation and loneliness, grief and connection. Andy is particularly passionate about the role that individuals can play in making change happen. Widowed in 2019, he resides by the River Cam on the edge of Cambridge with his Cocker Spaniel, May.