Design principal

Two things happened on Mary Marshall’s first day as director of
Stirling University’s Dementia Services Development Centre in July
1989 that have stayed in her mind.

The first was that her 74-year-old father was diagnosed with
Alzheimer’s disease, although an autopsy some years later showed
that this had not been the case.

The second was a call from the manager of a nursing home for
older people who was planning to build a wing for people with
dementia and wanted help with the design. “I went on a learning
curve that was almost diagonal,” says Mary Marshall. “And it
quickly became obvious that if we were into the business of design,
we also had to do it for ourselves.”

And so they did, but in a way that was mindful of her father’s
misdiagnosis. “The centre’s aim is to influence the design of other
public buildings, but this is not only about people with dementia –
it’s about anyone with some cognitive impairment such as people
with learning difficulties or people with high stress levels. We
want to influence architects and those who work in the health and
social services. We want to extend the coverage of the Disability
Discrimination Act to include cognitive impairment so we can
influence the design of all kinds of buildings.”

The open plan of the centre’s Iris Murdoch Building is a
dementia design principle – everything and everybody can be seen.
The building is light and non-reflective; there are no shadows and
high-quality acoustic tiles on the ceiling combat any echoes. There
is a glass-fronted fridge and the cabinets, drawers and doors have
glass panels. Carpets are blue, not patterned as these can cause
confusion. Different textured carpeting indicates where you
are.

As people with dementia can have problems with
three-dimensionality, each stair has a different coloured nosing,
the skirting is stair-shaped, and the banister is pillar-box red.
Different colours distinguish the seat, pan and back of the
toilets, the whereabouts of which are indicated by door signs
combining symbols, words and pictures. Light switches are in
vividly contrasting colours to the plain walls.

Under Marshall’s leadership – her personal chair came eight
months after she took up her post – the centre could be offering
advice on design to a council one day and publishing a guide on how
to bath someone the next, as well as running conferences and
training courses. All staff teach postgraduates, engage in research
and publish articles in journals. Research projects include
communication through the arts, sexuality and raising standards in
domiciliary care and the voluntary sector. Thus, its former
director sees the centre as “sitting on a bridge between an
academic centre and the field”.

However, Marshall’s career began in child care when Lambeth
Council’s children’s department offered her a social work
traineeship – she had been on placement as part of the diploma in
social administration at the London School of Economics. She then
moved to Liverpool University to qualify and work as a social
worker attached to a GP practice. By then she had decided that
child care was not for her: “Adoptions kept me awake at night.
Making new families seemed god-like and I still wonder what
happened to some of the children I placed.”

What appealed to her about working in a GP practice was that
“you could work with people in an unstigmatising way and work with
them very early on, whether it was mental or physical heath”.

The prospect of working with older people appealed: “There was
the richness of their history, the importance of relationships and
the complexity of it (housing, social services and health) – and I
like older people. It was also a neglected area, offering new
challenges. There were fewer standard procedures than in children’s
services and primary care and work with older people was then very
much an untenanted area.”

She moved to lecture at Liverpool for eight years in 1975 but
her epiphany came in 1982 in Australia. A year’s sabbatical had her
looking at dementia services in one of the states, where she
discovered progressive policies and programmes and the social model
of working with older people.

Marshall then returned to the UK to take over the running of a
then cash-strapped and crisis-ridden Age Concern Scotland (“after
what I had seen lecturing seemed a bit boring”). It spawned what
was then Scottish Action for Dementia Care, which was to fund a new
dementia centre. She was not involved with that but when Stirling
University won the bid, she successfully applied for the
directorship.

When it is suggested that the centre has been a forerunner of
dementia care, she responds: “It is difficult to know cause and
effect – dementia centres were riding on a wave of development of
dementia services. How much we were responsible for that and how
much we rolled with it and enriched it, I don’t know.

“But in 1989 the teaching was about pathology – what the
individual was thinking and experienced wasn’t on the agenda. I was
uncomfortable sitting through talks where people with dementia were
made to seem another species. Sixteen years later, we know that
they are trying to communicate with us, and we know that we need to
use pictures and optimise the circumstances when they talk to us.
No one now believes that people with dementia are talking rubbish.
I’m not saying that this is understood by everybody but 16 years
ago it wasn’t understood by anybody.”

But she also thinks the NHS still needs to learn that most of
its patients are older than 65 and that the separation of health
and welfare does not work for most people who need those services,
“so then you get government initiatives to try to weld together
these two unwieldy organisations”.

Older people “need more than processing”, she says. “Too many
documents quote legislation or talk about things like hospital
discharge when there’s no equivalent talk when it comes to children
or people with learning difficulties. Too often lectures about
older people start with the statistics – all the shock-horror about
numbers. But with children and people with learning difficulties,
it’s about people with potential and how to help them develop
it.”

She is frustrated by perceptions of dementia. “I get angry that
euthanasia is often associated with dementia. We are a very
hyper-cognitive society and we downgrade things that people with
dementia are good at – you don’t lose your ability to feel or care.
If the care is good enough, having dementia doesn’t have to be an
appalling experience.

“It seems that dementia is not a straightforward decline but
that people can return to some ability and periods of coherence. It
looks, too, as if a lot of people with dementia go through periods
of important creativity. So, it’s not all awful, but people want
things in black and white.”

All that Marshall has decided about retirement is that she will
not be an alternative voice to the centre and its new director. Her
future path is as yet unclear but perhaps the two events on that
first day 16 years ago have convinced her that what is predictable
is the unexpected.