"All in this Together 3: coproducing resilient communities" event - Cardiff 26th September 2012

1. ‘We are family’ – moving beyond
the ‘hotel’ model in care homes for
people living with dementia
Nick Andrews,
Planning Officer for Older People,
City & County of Swansea

2. The challenge – promoting ‘ageing
well’ for people who are NOT
‘successfully’ ageing ?
• The deficit model of old age has been replaced in
parts with the heroic model of old age based on
maintaining good health and independence.
• However, a curative & health focussed definition of
‘successful ageing’ leaves out an awful lot of older
people (Minkler & Fadem 2002, Nolan et al 2006).
• ‘You matter because you are you, and you matter to
the end of your life. We will do all we can not only to
help you die peacefully, but also to live until you die’
Dame Cicely Saunders – founder of the modern
hospice movement

3. Beginning with a reflection from
‘Road to 2012’
• ‘When I lost my legs, it
was “right, what can we
all still do together?” Still
play football and rugby
with my friends, sitting on
the floor as a goalkeeper,
scooting myself around
with a rugby ball in my
hands’ Nathan Stephens,
Winter and Summer
Paralympics athlete, Barry
Island, Wales

4. Time for a turn around…
• ‘For Wales, see
England’
Encyclopaedia
Britannica, 1888

5. Questioning English social policy
around ‘personalisation’
• ‘We believe that the label “personalisation”
has become too closely associated with a
market-led model of consumer choice’
Gwenda Thomas, Deputy Minister for Children
& Social Services.
• Less focus on individual consumerism and a
stronger focus on ‘co-production’, shared
responsibility and community

6. Getting back to the heart of the
Independent Living (IL) moving
• ‘There has always been a distinction between what we mean
by IL in Britain and what they mean in the States. IL in America
is organized around self-empowerment, individual rights and
the idea that in the land of the free and the home of the brave
– all that cr*p – individuals, if they are given access under the
law and the constitution, can be independent. In contrast, in
Britain . . .IL entailed collective responsibilities for each other
and a collective organization. It wasn’t about individual self-
empowerment; it was about individuals helping one another
(i.e. interdependence). Once you accept that notion, it seems
to me, you are beginning to question the foundations of the
society in which we live’. (Campbell & Oliver, 1996, p. 204)

7. Recognising the impact of ostracism
• A recent large scale study on the effects of ostracism
found that:
• 2-3 minutes of ostracism (even via a computer
programme) produced strongly negative feelings
across all personality types – especially sadness &
anger
• Self reports of belonging, self esteem, control and
sense of meaningful existence were all threatened
• Ostracism in nature usually results in death
• Prolonged ostracism in humans leads to ‘social
death’ (Williams and Nida, 2011)
• People with dementia are highly prone to ostracism

8. Recognising the importance of
reciprocity
• The world of helping others
in need is now built around
one-way transactions…..
and with the best of
intentions, one-way
transactions often send two
messages unintentionally.
They say: “We have
something you need – but
you have nothing we need
or want or value.” And they
also say: “The way to get
more help is by coming back
with more problems.” Cahn
(2000)

9. Hogewey - reciprocity in practice
Copyright: Pavel
Prokopchik

10. ‘All real living is meeting’ (Martin
Buber) – Reciprocity has a cost
There are two ways of
relating to people and
the world:
• I-IT Implying
coolness, detachment
and instrumentality
• I-THOU Implying
attachment, self
disclosure and
vulnerability
Professional attachment - ‘That which is most personal
is most universal’ Carl Rogers

11. Recognising the importance of
relationships and interdependence
In enriched environments
of support, service
users, carers and staff
achieve:
•A sense of security
•A sense of continuity
•A sense of belonging
•A sense of purpose
•A sense of achievement
•A sense of significance

12. Recognising the importance of
relationships and interdependence
In enriched environments
of support, service
users, carers and staff
achieve:
•A sense of security
•A sense of continuity
•A sense of belonging
•A sense of purpose
•A sense of achievement
•A sense of significance

13. Recognising two kinds of well-being
• Short term pleasures of the
kind elicited by the senses,
e.g. watching a game of
rugby
• Long term satisfactions
linked to meaning and
purpose in life – linked to
biological markers of health
(Ryff et al 2004)

14. The importance of short term
pleasures
• ‘A hospital would insist
on a strict diet for a
dying diabetic patient.
We serve chocolate
cake’ Dame Cicely
Saunders on life at St
Christopher’s Hospice,
London

15. The greater importance of longer
term satisfactions
• ‘Those who have a 'why' to live,
can bear with almost any 'how’’
Viktor Frankl, Man’s Search for
Meaning

16. From ‘hotel’ model to therapeutic
community
• Promote a family culture, e.g. eating together
and sharing the same toilets
• Have a clear values based service model, e.g.
VIPS
• Congruence and integrity – being person
centred, not doing person centred care
• Recognise that feelings matter most, including
for staff who need emotional supervision
• Challenging task based care and creating
moments of meeting (Butterfly approach)

17. From ‘hotel’ model to therapeutic
community
• A positive approach to risk, including ‘cwtch’
and so called ‘wandering’
• Life story work
• Cognitive functional assessment
• Use of creative arts
• An appreciative enquiry approach to quality
assurance and service development
• Focus on ‘lived experience’

18. Some initial outcomes in Ty
Waunarlwydd care home
• Personhood being maintained through active
participation
• Evidence of improved cognitive function
• People previously assessed as needing EMI
nursing care are able to be supported in
residential care home
• Staff who say its not like coming into work
• Family carers who are encouraged and involved
• Developing the approach elsewhere linked to
My Home Life Cymru – Care Home Quality Team

20. Final word from ‘I’m still here’
• ‘Hands up in the audience if
you are trying to help me be
all that I can be for as long
as I can be? Who wants to
help enable me to be as
much as I want, as much as I
can, as much as I should
right now, and every
tomorrow until the day I
die?’ Person living with early
stage dementia in Zeisel, J
(2010): I’m Still Here -
Creating a better life for a
loved on living with
Alzheimer’s’