In one of the care homes where my mum lived, there was a volunteer. A widower, his wife had had dementia and had lived in the home for some years dying a short while before my mum went to live there.
Let's call him Jo. Jo would come into the home every day. He would visit all the residents – whether up and about or bed-bound, having little cheering chats and the occasional joke with them. He would deliver the daily paper to those that wanted it and, in my mum's case, sit with them and read it or look at it together, with the occasional, "Oh that's not very good, is it?" or "Blimey, just look at that outfit, eh?!" etc etc.
He'd help out with and eat lunch with the residents, staying on for any afternoon activity and after a cuppa and a biscuit, return home. It was a fantastic scheme, helping him through his personal bereavement, giving him a sense of belonging, security, purpose, achievement, significance and continuity in his life – and a proper meal once a day. Meanwhile, his regular presence made life in the home seem a lot more normalised and less institutional for residents and their families – and provided some much-appreciated support for the staff too.
I believe that volunteers are an essential ingredient in improving quality of life in care homes for residents, families and care staff alike. Care homes with volunteer programmes are likely to be less stressed, less stigmatised, more connected to the community and more able to improve life for all stakeholders, in many different ways.
So I'm really pleased that for the last year or so, I've been part of the Volunteering in Care Homes strategic advisory board for NCVO. Volunteering in Care Homes is a national three-year pilot project, funded by the Department of Health to provide opportunities for care homes and their local communities to work together to help enhance people's quality of life, build more cohesive communities and enable more active engagement.
The project has been operating in five pilot sites, volunteers being recruited and supported through their local Volunteer Centre to share their time and skills with older care home residents in bespoke activities. These might include supporting a resident to lead a group activity such as a reading group; providing companionship around shared interests such as knitting, walking, playing board games and home background.
By sharing the project's developments with those who have experience of working in care homes and engaging volunteers, NCVO plans to identify a national standard of good practice in volunteering in this sector.
The Institute for Volunteering Research is evaluating the impact of the work and will continue to conduct biannual interim evaluations, the findings of which will form the focus of the learn and share events.
An expert panel made up of representatives of Methodist Homes, Jewish Care and Abbeyfield which all have experience of engaging volunteers in their care homes provides operational support and guidance. The Strategic Advisory Group includes representatives from the care home sector; residents and relatives; volunteering, older people; health and social care research; voluntary sector and workforce development – and me.
My mum loved her birds. An enduring memory is her washing up at the kitchen sink watching the garden's feathered population flittering and scampering around the bird table outside the window. When she had a ground floor room in one of the care homes where she lived when her dementia deepened, there was just such a bird table outside and we would sometimes sit at her window and enjoy watching the garden birds. It was a lovely, quiet thing to do together and gave us both pleasure.
This morning's BBC report shows how simple activities can make a big difference to a person with dementia – and their carer too.
A BBC Radio 4 listener has explained how counting birds has brought her closer to her mother, who has dementia. Susan Andrews, who lives in Stratford-upon-Avon, says her mother Sheila's memory loss has impacted on the pair's relationship. Ms Andrews told the iPM programme that she found that watching birds together for an hour was a good way for the two to connect. She explained how it had been something that they had done together every year before Sheila had been diagnosed with the disease.
My daughter Poppy wrote this blog for the company Active Minds where she works. She has encapsulated in this article notions that are central to all my work (thanks Pops!).
Last week I came across a blog in the New York Times by Jane Brody (writing on health and ageing) entitled Caring for the ALzheimer's Caregiver in which she tells some tales from a husband’s life as a caregiver to his wife, who has been living with Alzheimer’s for over a decade. The story is compared to those in Psychologist and Author, Dr. Judith L. London’s new book entitled, Support for Alzheimer’s and Dementia Caregivers: The Unsung Heroes.
The book presents a large number of stories of situations that have confronted caregivers encountered by Dr. London over the years. The stories provide an opportunity for Dr. London to offer her suggestions to those in similar circumstances on how best to deal with the situations reflected in the stories she is retelling.
It is a good reminder of the importance of storytelling.
Often we can find ourselves concerned with the stories of those with dementia, and in the interest of activities for those individuals, concerned with the therapeutic nature of reminiscence and life story. This is because if someone is encouraged to tell a story about themselves and of their past – and they are listened to – the process of that storytelling – of sharing – is fun and enjoyable and also known to enhance feelings of a sense of identity and a sense of self-worth.
And in the process of the story being shared, we too get to know the storyteller a little better. And if we know them a little better, we can engage with them a little better. And if we can engage with them a little better, we can relate to them a little better. And if we can relate to them a little better we can care for them a little better.
“Sharing is caring”
The same therefore is also true when it comes to those who are the caregivers.
Sharing the anecdotes and stories of caregivers holds an almost identical value to sharing the stories of those with dementia – those who are the caregivers feel valued if they are listened to. Those listening can offer their moral support and; if they find themselves in similar circumstances, can learn from the stories being told.
In the case of Dr. London’s new book, there are 54 individual stories and I’d bet those 54 stories represent only a small selection of the stories she has collected in her years as a psychologist. Why? Because we are all unique (we are all individuals) and so are our stories. When it comes to dementia, the stories of patient and carer are as varied and unique as the people themselves.
In our efforts to relate and to understand better, it is vital that peoples’ stories are told, and listened to.
Stories offer a chance for healing, for relating and comparison and for learning.
The Science of Story Sharing
In a study by Princeton University, a team of scientists lead by Uri Hasson conducted a study on speaker-listener brain interaction. A bi-lingual subject was chosen to tell a story in both English and Russian to a group of people who could only understand English. Both storyteller and listeners were hooked up to MRI scanners to relay the areas of the brain that were activated in both parties throughout the story telling. When the storyteller spoke in Russian to those that could only understand English, there was no synchronisation in brain activity between speaker and listener. When the storyteller told her story in English however the volunteer listeners of course understood her story and their brains synchronized - when the speaker had activity in her insular cortex (the area of the brain which links to emotion) so did the listener, and when the speaker’s frontal cortex lit up, so did the listeners':
A speaker's brain activity can actually be replicated in a listener's mind.
This is known as ‘neural coupling’ and it demonstrates that a listener can feel with a speaker/ storyteller…
“Communication is a shared activity resulting in a transfer of information across brains. The findings shown here indicate that during successful communication, speakers’ and listeners’ brains exhibit joint, temporally coupled, response patterns…”
Storytelling can help to drive connection. Storytelling can help enourage empathy.
Storytelling + Storylistening = Storylearning
In the case of someone with dementia, their story is an important part of their identity as an individual and the telling of their story an important part of feeling valued, connected and related to.
In the case of the caregiver, their story is an important part of their day-to-day life and telling their story an important part of their self-care, their therapy, and of feeling supported in what they do… “A problem shared is a problem halved”.
In both cases, sharing stories and those stories being listened to and understood, has the effect of reducing feelings of stress and isolation. It can be an empowering experience for both speaker and listener, and help to support the mental wellbeing of both parties.
Whenever we hear a story, we are wired with the desire to relate it to one of our existing experiences. When someone’s story is listened to, and understood, the message is:
"It’s an English assignment." “English?” “Yeah. We had to build a robot and then write an essay about what it can do.” “So what does your robot do?” ‘It’s supposed to help the elderly with everything that they can’t do themselves.”
She asked if I wanted to hear a poem she’d written when she was younger. (At what age, she couldn’t remember) She then recited it from memory. I had her repeat it several times so I could get all the words right:
Were I to dream, then dream I would of days that have gone by.
Your eyes would gleam and so would mine, but joys remembered are no longer mine.
I walk in a garden of memory, reliving the joys and the sorrows as well. I walk with a cane down memory lane, perhaps there, joys remembered will remain.
Perhaps when my hair has turned to gray and my face is etched with pain, I’ll walk with a cane down memory lane. Perhaps there, joys remembered will remain.