Spare Chat with Janet Morrison – Transcript
By Janet Morrison
CEO of Independent Age, Chair of The Baring Foundation
1 March 2016, New Diorama Theatre London.



I’m going to say a few things that may seem unconnected, but I hope you’ll
understand later why I mention them – and they’re quite personal.
And then I’m going to say a bit about working with people with dementia and the
arts, and then I’ll just ask a few questions I guess.
And I hope I won’t go on too long, but once I start you never know…!
First of all, three things:
First fact is – I run an advice organisation, and one of the first things that strikes
people and comes as a real shock is when they’re looking for care for someone with
dementia and they discover it’s not free under the NHS. It’s actually social care, and
therefore it’s means-tested and you may actually spend an awful lot of money
before you ever get any state-funded support. And that comes as a shock.
And actually the reason for that is that the NHS defines dementia as not being a
health issue because it’s not curable. So therefore it’s a care issue. And I think that’s
very strange in a way because it demonstrates this idea about curative model of the
health service – it’s there to cure you – take you to hospital, cure you, and send you
home. But actually older people’s experiences often aren’t like that.
And also, as a social care issue it’s a very challenging one. So one of the most
challenging issues about working with people with dementia – and there’s a huge
variety of experience of dementia – is that actually it’s often quite hard to work with
people. When you want to talk about well-being and person-centred care, and those
people can’t always themselves define what it is that they want, and what their wellbeing
means. So I think that’s one of the biggest challenges of working with people
with dementia.
Three weeks ago my mother died, and I’m actually still reeling with grief and I’ve had
a really hard time with it. It comes and goes, but it’s a big issue for me obviously.
Writing speeches or thinking about my work has been very tough, and one of the
things that I find – people who really care about me, when I talk to them, when I
want to express how I’m feeling – they often want to suggest solutions, they want to
say ‘ooh could you get some counselling’ or ‘look after yourself’, or ‘keep going to
your Pilates’ – they want to suggest solutions. And that’s our human therapeutic,
supportive way of being; we want to suggest a solution. But the reality is, I know
that I can’t bypass my grief; I have to accept the loss and accept that pain, and it is
still painful. So sometimes I get frustrated with people who want to suggest a
solution, but actually I understand that that’s our need is to help you out, but you
can’t help me out, but you can by just being and listening.
And the third thing I want to say is – whilst I was thinking about this talk I was sitting
in a coffee shop and a friend of mine came in and she’s a very bustle-y friend. We
had this conversation – a brief conversation because I was trying to think about my
talk – but I said to her ‘how are you doing? How’s the new website? How’s it going
with your ex? What are you doing at the weekend?’ – those sort of prompts for a
conversation.
And it’s all about enquiring, asking questions and information, and it’s a kind of
conversation arc; a norm of how we talk to each other is exchanging information.
And yet, when we work with people with dementia we can’t actually always
communicate in those ways that we’re so used to and we’re so comfortable with,
because the reality is, when you’re talking to somebody with dementia, if you ask
them information – ‘how was your day?’ or ‘what did you do yesterday?’ – you may
actually cause confusion or distress. People may make things up – confabulate as
they say. They may not understand the words you’re saying. And you may not be
able to pursue those norms of conversation that you’re used to. You may be put
under pressure to think about communicating and interacting with people in a
different way and so people who experience dementia also lose some of their ability
to complete tasks, lose track of where they’re going, get confused by what’s going
on around, get over-stimulated by too much stimulation or whatever.
And so we actually, rather than trying to drag people with dementia into our ways of
finding solutions or being purposeful or sharing information – we may actually have
to learn to do something different. Which is rather than drag them in to our world,
incessantly trying to drag them into our world we have to step into their world and
learn a different way to be and be more open to experiencing the world through
their eyes not ours – and I think that’s quite challenging for all of us to learn a
different way to be. I think one of the things that we find is that we have to learn
different ways to do things, and actually, creative approaches can actually help us
open up to a different way of having discourse and communication. […]
And it also helps us to get in touch with the fact that some of the ways the state
intervenes and approaches well-being are very narrow, and some of the ways even
that older-peoples charities like my own intervene and help people and think about
well-being are very narrow – so we might get befriending schemes and lunch clubs
and advice and things like that but actually what we really know about well-being is
that well-being is about that ability to express emotion – to touch things, to feel
things, to taste things, to be touched, and to be moved and to smell things and to
have sensations and feel things. So I think we do need to think about creative ways
to take us out of our usual and into other people’s worlds.
I was just going to reflect on a couple of things about carers because I think it’s an
important dimension that we do think about but maybe not in the right way.
There’s some interesting models actually. There’s a care home in the UK that I know
of and there is one in the Netherlands where working with people with quite late
dementia – they occupy the world and the era that those people are in. So if that
person is in the 40s or 50s, the staff accompany them and act out the 40s and 50s;
they don’t try and drag them into the present, they live with them in that world.
And it’s a little bit controversial, and it raises questions. But one of the interesting
observations about that is it’s particularly challenging for carers, because carers – if
you’ve been supporting someone with dementia and you’ve been caring for
someone with dementia – you have been trying to keep them functioning in the
everyday, you have been trying to keep the person that you love close to you and
keep that relationship, that history of your relationship. And sometimes that’s very
challenging to have to let go of that and say ‘Ok, I will let them be in 1952’ or ‘I will
let them be in their own world’ because you desperately – you probably help them
function for a very long time, but it’s sometimes hard to let go, and so I think we
need to think about carers very explicitly, about how we support them.
Now, I’m very fortunate as Chair of the Baring Foundation - we’ve funded lots of
projects, but of course not all of them this, but there are some really interesting
things that I just wanted to highlight about creative approaches, and they’re very
different and they may have different ends and purposes. So, I was at a conference
yesterday with Methodist Homes – they are very committed in their care homes to
art therapy, which is on an individual basis. It’s very therapeutic, and they place
great store and great value on it. I’ve also through the Baring Foundation – and
that’s working with people with dementia – through the Baring Foundation we
funded Sage, Gateshead, who do a very lovely project going into care homes working
with people with dementia in a group setting. And by doing this work it illuminates –
you can reach people through music who may no longer be able to communicate
verbally or whatever, but you can reach them through music, and suddenly you
discover these personalities blossoming, and you suddenly see the person within. It
illuminates for the staff, because sometimes they realise not to see the condition or
the lack of skills, but actually to see the person within. It can be transformative in
terms of how families and relatives see their relative as well, and so I think that’s
very valuable.
There are also other things where I’m quite interested by where people apply
different methodologies in different places. […] On the individual there’s a lovely
one, I just want to say, (I know I sound like I’m a globe-trotter; I wish I was!) but I
was in Finland and I was visiting a care home, and they just did a very sweet thing,
which was they got the staff members to sing and hum folk tunes or whatever they
wanted to whilst they were dressing or feeding or working with the residents who
had dementia. And it calmed the interactions. But funnily enough we actually had to
be encouraged to do that. I used to do it with my baby daughter (I’ve been
discouraged by my teenagers from singing), but actually, sometimes in a workplace
it’s quite hard to encourage a care worker to say it’s ok to sing whilst you work, but
actually it has a very lovely calming influence on the residents, so that’s on the
individual as well. […]
In Australia there was a lovely piece of work, which surprised me a bit, but it was
about using Montessori methods with people with dementia. And I was interested
by that, because my first sensitivity (because we’re all quite ‘right on’ about things
aren’t we), my first sensitivity was – a thing for children with older people, I’m not
sure I like that, but interestingly it’s a creative approach. It’s a way of interacting and
releasing people’s choice and control, rather than being a childish thing to do. What
they’d done in this care home was that actually by working using Montessori
methods, they’d actually got people with dementia who were regarded as having
very few day to day skills – they were starting to serve meals, they were getting each
other drinks and whatever, they were creating their own little rituals, but they were
doing things that no one actually believed they could do, because they’d been
released. So I was interested by that, and that’s a kind of using an application or a
process.
But most of all – and this is lucky because I’m at Spare Tyre – most of all I’m most
interested by the things and the work where we really let go of process. It’s easy for
me to say because I am a funder and we all like outputs and outcomes and see it
written up and ‘this is what will happen’. But in reality if we want to work with
people with dementia we need to release some of that expectation of results – of
answers and solutions – and just find a way to be in the here and now with them.
And what that means is, creating environments that allow imagination and curiosity,
and it matters now that you can come and touch this flower and feel it or water it, or
put your hand out for the water in the rain, rather than saying I’m going to take you
through a step-by-step process, I’m going to let you be. And I’ll say a couple of
things about that.
One of the big inspirations in arts and health is a woman called Anne Basting who
has worked in America. And I’ll just highlight this one project, it wasn’t specifically
about dementia, it’s still a bit of process I think, but it kind of leads on to the other
two things I was saying. And that was called Penelope’s Project, and it was taking
Homer’s Odyssey into a care home for over a year and, I was reading up about it and
I liked it, what they said was, ‘we thought that a story where someone is waiting –
and waiting – and waiting may be rather familiar to people living in a care home. We
thought a story where Penelope has 108 suitors coming and going trying to win her
hand would be familiar to people in a care home – you see all these strangers
coming and going – and then when Penelope’s husband does get back,’ (where’ve
you been? – my thought) ‘she doesn’t actually recognise him, we thought that might
be familiar to people in a care home’. So I thought that was very interesting.
What they did for a year long, they took people on discussions, explorations, they
got people weaving and knitting, they got people decorating the whole environment
in the building. They sang songs, they did dance, and they acted and whatever – for
a whole year. And all the staff were involved, and the residents were involved, and
actors were involved as well – a whole year-long process. And the thing that I like
about that – it’s quite a famous case – but what I like about that is that they said the
care home was very brave and courageous – it had no idea what it had let itself into.
But it gave them a whole rhythm of life for a whole year where everyone was
engaged in doing something around this story, and I thought that was interesting.
But it was still about a process, and what I particularly like, and I’m going to say
Spare Tyre is one of them and I think this is the real example, but another example
I’ll give you which is of a project in Tasmania called Animated Anthologies and this
was done by Creature Tales. And what they did was they went into a secure wing in
a care home with dementia residents, and they had two artists who lived in the care
home for seven days, 24/7, and they created a shack and they made props, and
there were bits of fabric and whatever, and there was an ironing board – not with a
hot iron, but you know – and there were all sorts of things, and there was artificial
grass and whatever, and they just interacted, and everyday they might introduce
one or two new props and the residents got involved and started doing things. And
it turned out one of the chaps actually started giving a golf lesson because he knew
quite a lot about golf. And then someone else wanted to do a bit of sewing and
other people were making props. And it just transformed that place for a whole
week – it transformed the place, and the people – the residents were seen in a
different light. They were in the moment exploring. And it wasn’t very verbal, it
didn’t have any end purpose, it didn’t have that desire to make solutions or cure
anything, it just let them inhabit imagination and curiosity. And I think that’s why I
like this work, and I have to say we’re not a funder of this work, so I’m not biased, I
just like this work. It’s very brave and bold to say that ‘we will value the curiosity
and the imagination of the people who come and use this space. We’ll value that as
much as we value the creative input of all of the great artists here who’ve created
this environment and who are interacting with it.’ And I think that’s a very beautiful
thing because it’s saying ‘I don’t really care about results, I care about creating a
space in which your imagination – your curiosity matters. Because here and now
matters.’ And actually the reality is – and it’s not just because I’m experienced in
grief or whatever else – for me to experience it, to be calm, to be quiet or to think
about my touch or my senses is good for me too – it’s worldly and it’s otherworldly,
and I think that’s meaningful.
So that’s all I really wanted to say. I’m not very provocative – I can be extremely
provocative, but I’m not being provocative today – but I suppose […] a couple of
questions I’ll ask, and I’m not expecting anything, but I’ll just ask a few questions
about it.
One is – I don’t know if there are other funders here or people who are involved is –
how do we allow ourselves to support things that have more open, that see what
they’re creating that space and those possibilities as enough rather than needing to
know our outcomes and our arts and health outcomes and all of that. I absolutely
believe that there are therapeutic and all sorts of other outcomes and benefits, but I
don’t think that’s the point.
How do we as funders be able to engage with that and say I actually like the quality
of the work? Also, how do I – working in an aging sector, and other organisations
like me – think in a broader way about what their well-being is? Not just about
services, but about places and things that we can do to stimulate that wider
understanding of well-being. And also, I suppose, the other question I had in my
mind – and I simply don’t know the answer – is about – is there a framework or a
hierarchy or something about where the one-to-one is of great benefit and artistic
creative engagement is a great benefit – when is it that the more process based
programs have value? And where is it that things like this that allow you to be and to
experience and to go into the place where the person with dementia is – where are
those a value, and how do we play those all in?
And also, as I said, still importantly is how we think about the carers, because the
experience of dementia is often experienced by the carer as profoundly as is
experienced by the person with dementia. So how are the creative approaches that
we support and we think about designed to support them too – not just as the
person who comes in the room with them, but as them in terms of their well-being
and their needs.
So, that’s all I wanted to say! Thank you.

© Spare Tyre 2016

In March 2016 Janet Morrison, CEO of Independent Age and Chair of the Baring Foundation, joined us as key speaker for a Spare Chat event, discussing the role of the arts in working with people with dementia. The event took place on the set of The Garden.

Spare Chat events are run by Spare Tyre with the aim of provoking important conversations relevant to the arts sector. 

Find out more about The Garden