Achieving Excellent
Dementia Care
What do we know and how can
we do it?
Isabelle Latham
Association for Dementia Studies – University of Worcester
© The Association for Dementia Studies
Association for Dementia Studies
Developing evidence-based practical ways to help people
live well with dementia
• Multi-disciplinary innovative
research centre.
• Education, practice
development and
consultancy
• Involvement of people living
with dementia in all our work
• Practical publications and online resources
• PhD studentships
© The Association for Dementia Studies
Our projects with care homes
 CHOICE project: Care Home Organisations Implementing
Cultures of Excellence
 FITS programme: Focussed Intervention Training and
Support for care staff
 Evaluation of the Keys to Care resource
 Role of the Admiral Nurse in Care Homes
 Enhancing Healing Environments programme (King’s Fund)
 Bespoke education and consultancy
 PhD Study: How care home workers learn to care for
people living with dementia
 Namaste Care: End of life care in advanced dementia
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Useful resources
www.worcester.ac.uk/dementia
Brooker & Lillyman (2013)
H|D|R|C
Housing and Dementia
Research Consortium
Brooker & Latham (2nd Ed) (2016)
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Person Centred Care: is it old hat?
• Pre-dates our technical
advances in dementia care
• Complex “head-piece” that has
many bits stuck onto it
• Confusion with individualised
or personalised care
• Can be all things to all people
• Is it still relevant?
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The core fear in dementia is
“I will stop being me”….
So, what do we see?
The person with
DEMENTIA?
or
the
PERSON with dementia ?
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Theory development: Tom Kitwood
 Person centred approaches to
dementia care; 1989-1997 drawing
on Martin Buber and Carl Rogers
 The enriched model of dementia
 Supporting personhood through
the eradication of malignant social
psychology and promotion of
positive person work
Kitwood, T. (1997). Dementia Reconsidered: the
person comes first.
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Person centred care & Personhood….
Person Centred Care is
the process by which
service providers
maintain the
personhood of those
who receive their
services…..
“Personhood is a standing
or status that is
bestowed on one
human being, by
others, in the context of
relationship and social
being. It implies
recognition, respect
and trust…..”
Kitwood, (1997)
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The research evidence?
• Person centred care provides a set of guiding
principles to apply across service settings and
countries
• In itself it is not a single intervention
• The challenge is to enable practitioners,
professionals and services that can provide
interventions in a person centred manner
• RCT trials, qualitative and evaluation evidence
shows this is possible and makes a difference
• Anecdote and experience tells us it makes a real
difference………..
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May’s Story:
“all needs, no
mobility, not eating”
6 days after
admission to a
care home.....
Mrs May Williams , Lady Forester
Home taking part in the:
Enriched Opportunities Programme
(ADS and Extra Care Charitable Trust)
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May’s Story:
“all needs, no
mobility, not eating”
1 month later
baking
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May’s Story:
“all needs, no
mobility, not eating”
6 weeks later
tea and
teddy
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May’s Story:
“all needs, no
mobility, not eating”
2 months
later – head
massage .
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May’s Story:
“all needs, no
mobility, not eating”
2 months
later – old
skills
returning.....
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May’s Story:
“all needs, no
mobility, not eating”
3 months
later –
dancing to
music....
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Their personhood, our personcentred care
How does it all fit together?
CHOICE project
Care Home Organisations
Implementing Cultures of
Excellence
FITS into Practice Evaluation
Focussed Intervention Training for
Support – to implement personcentred care and reduce antipsychotic prescribing for people
living with dementia
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Person-centred dementia care
A service fit for V.I.P.S
Brooker, (2006)
V&I require leadership
from those responsible for
leading the organisation
and for setting standards
and procedures
P&S require leadership
from those responsible for
day to day management
and delivery of care
NICE-SCIE Dementia Guidelines (2006)
for Person Centred Care
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Guiding Principles
• Do my actions show that I respect, value, and honour
this person?
• Am I treating this person as a unique individual?
• Am I making a serious attempt to see my actions from
the perspective of the person I am trying to help? How
might my actions be interpreted by them?
• Do my actions help this person to feel socially
supported and that they are not alone?
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V – Valuing
V1 - Vision:
Does everyone know what we stand for and share the vision?
V2 Human resources:
Are systems in place to ensure staff know that they are a valued, precious
resource?
V3 Management ethos:
Are management practices empowering to staff?
V4 Training & staff development:
Are there systems in place to support the development of a workforce skilled in
person-centred care?
V5 Service environments:
Are there supportive and inclusive physical and social environments?
V6 Quality assurance:
Do we strive to get better all the time?
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I – Individual Lives
I1 Care and support planning:
Do our plans promote individual identity, showing that everyone is unique?
I2 Regular review:
Do we recognise and respond to change?
I3 Personal possessions:
Do people have their favourite and important things around them?
I4 Individual preferences: Are a person’s likes, dislikes, preferences and choices
listened to, known about and acted upon?
I5 Life history:
Are a person’s important relationships, significant life stories and key events
known about and referenced in every day activities?
I6 Activity & occupation:
Is a person’s day full of purpose and engagement with the world, regardless of
their needs and abilities?
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P – The perspective of the person
P1 Communication:
Are we alert to all the ways that people communicate and are we skilled in
responding appropriately?
P2 Empathy & acceptable risk :
Do we put ourselves in the position of the person we’re supporting and think
about the world from their point of view?
P3 Physical environment:
Is this a place that helps someone living with dementia to feel comfortable, safe
and at ease?
P4 Physical health: Are we alert to, responsive to and optimising people’s health
and well-being?
P5 Challenging behaviour as communication: Do we always consider and act on
what a person is trying to tell us through their behaviour
P6 Advocacy:
Do we speak out on behalf of people living with dementia to make sure their
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rights, respect and dignity are©upheld?
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S – A Supportive Social Psychology
S1 Inclusion: Are people helped to feel part of what is going on around them and
supported to participate in a way that they are able?
S2 Respect: Does the support we provide show people that they are respected as
individuals with unique identities, strengths and needs?
S3 Warmth: Does the atmosphere we create help people to feel welcomed,
wanted and accepted?
S4 Validation: Are people’s emotions and feelings recognised, taken seriously and
responded to?
S5 Enabling: Does the support we provide help people to be as active and
involved in their lives as possible?
S6 Part of the community: Does our service do all it can to keep people
connected with their local community?
S7 Relationships: Do we know about, welcome and involve the people who are
important to the person?
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Its about the culture, stupid….
What is organisational culture?
 The values, assumptions and norms of behaviour that
influence how members of an organisation behave and
interact.
 These help provide working solutions to everyday
problem-solving and decision-making.
 This includes formal rules and overt values but also
subconscious or unofficial practices
 Passed on to new members as “right”: ‘the way we do
things here’.
(Schien, 1990)
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Providing personcentred care
experiences depends
on a positive care
culture
There are seven
features of positive
care cultures
Without good soil,
strong stems, and
healthy leaves, the
flower won’t thrive
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(Brooker & Latham, 2016)
Person-centred care is
seen to ‘work’ for people’s
well-being
Norms of care practice
reinforce beliefs, values
and actions
Frontline staff are
enabled to make day to
day decisions so that care
is person-centred
Beliefs, values lead to
actions that create
conditions for personcentred
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Studies care to happen
Old Culture
New Culture
organisational culture creates the conditions for
person-centred care
‘Malignant Social Psychology’ needed to be
transformed into ‘Positive Person Work’
(Kitwood, 1997)
These practices are habitual and passed on from
one worker to another and normalised in day to
day work
© The Association for Dementia Studies
Organisational culture has to allow solutions to everyday
problems to be positive
Person’s psychological need: Comfort
Behaviour (MSP) that detracts from need:
“WITHHOLDING”
Refusing to give asked for attention, or to
meet an evident need for contact
Behaviour (PPW) that meets the need:
“HOLDING”
Providing safety, security and comfort to a
person
In a busy care home Mr Martin cries out: “help me, help me, please help
me.” Staff are very busy providing care and support for other residents
The care worker asks her colleague to go
to the next resident. She visits Mr
A care worker turns to her colleague
Martin and holds his hand. “it’s okay, I’m
and says, “He’ll just have to wait his
turn. We have to do Room 4 next as the sorry we’re so slow today,” she soothes
him for a few minutes and then says,
GP is coming soon.”
“Here’s your paper to read, we will be
with you by half past 9.” She then rejoins
her colleague.
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For positive person work to exist in
this scenario:
We all work
together
We all matter
• Everyone in the home needs to agree that
soothing Mr Martin is important, even though
its busy.
• Everyone in the home has a role to play in
meeting Mr Martin’s needs.
Leadership
protects frontline
care
• The manager has to explain to the GP that
‘room 4’ might be delayed and why this is
necessary
Empower and
support frontline
staff
• The care workers need to be skilled,
encouraged and rewarded to take this type of
action for Mr Martin.
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For positive person work to exist in
this scenario:
We constantly
look to make life
better
• All staff need to be observant, willing and able
to change what they’re doing to meet Mr
Martin’s need today and everyday
We help people
to enjoy places
• The routine and physical set up of home needs
to change to accommodate Mr Martin’s need
today and everyday.
We help people
to enjoy life
• All staff need to know that having something
to do is important, and Mr Martin’s newspaper
needs to be readily available to give him.
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Without good soil,
strong stems, and
healthy leaves, the
flower won’t thrive
Whatever you do,
you have to ensure
it waters your
plant!
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Thank you
Isabelle Latham (MSc, MA, Cert ed)
For more information contact: [email protected]
Visit the ADS Website: http://www.worcester.ac.uk/dementia
Follow us on twitter: @DementiaStudies
Follow us on Facebook: Association for Dementia Studies
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Our plant’s root #1
We all work together to deliver best care
• Everyone had the same
understanding of what
person-centred care
means in their home
• This understanding was
based on practical,
everyday actions and
their impact on
residents
When different staff at one
home were asked what advice
they would give to a new
member of staff, all of them
independently answered:
“get to know your
residents”
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Our plant’s root #2:
We all matter to each other
• All residents, staff and
visitors have opportunities
to be involved in home life
• Residents are known
throughout the home and
enjoy everyday
experiences
“When G’s niece was visiting I
saw her chatting and welcomed
by staff. Smiles and ‘how are
you?’ She belongs here, she is
not just “next of kin” , she is a
friend to us,” (Researcher Observations)
• Friendship-like
interactions with and
between residents
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Our plant’s root #3
Leadership protects frontline care
“Making sure the T’s are crossed and
the I’s are dotted, that’s what the job
is mostly about now. The amount of
time staff have to sit down and
spend on care plans,” (Manager)
this led to a typical observation of
care practice:
“Carer asks about dietary records for
residents who haven’t eaten yet.
Another carer replies ‘just record a
spoonful’.
Care plans are a care task here
rather than a product, to the extent
that we record something even
when it hasn’t been done,”
• Managers protected the
daily work of staff from the
impact of external factors
by absorbing it or
translating it into residentfocussed action
• External factors included:
regulatory & organisational
requirements, family
requests and financial
pressures.
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Our plant’s stem
Empowering and supporting frontline staff
• Staff were both
willing and able to
make decisions and
take action for
resident well-being
• Management &
leadership practices
either encouraged or
discouraged this
Fred’s key worker was highly
responsible and had good insight
into why he often reacted
physically to staff. However,
management were seen to exclude
care staff from discussions about
Fred’s care.
When the manager was asked
about the key worker’s relationship
with Fred she replied: “I haven’t
really thought about why she’s so
good with him.”
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Our plant’s 3 leaves
The norms of care
We constantly look to make
life better
Openness to change for the
benefit of residents. When it
directly benefits a resident
change happens daily.
We help people enjoy places
The environment is used
flexibly and changed daily to
meet residents needs.
We help people to enjoy life
We enable meaningful
occupation and engagement
for residents all of the time
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Acknowledgements: CHOICE PROJECT
This research is funded through the PANICOA programme by the Department
of Health and Comic Relief. The views expressed in this presentation are
those of the authors and do not reflect those of the Department of Health
or Comic Relief.
With special thanks to:
• The care homes (including residents, relatives, visitors and staff) who
volunteered to take part the project
• Our research team colleagues at University of East Anglia, University of
Stirling and Cardiff University
Killett, A et al., (2014) “Digging deep: how organisational culture affects care
home residents' experiences” Ageing and Society, available on: CJO2014.
doi:10.1017/S0144686X14001111.
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Acknowledgements: FITS into Practice
The FITS into Practice programme was led by the Association for Dementia Studies, University
of Worcester and funded by the Alzheimer’s Society and HC-One.
It built on an original randomised controlled trial of the FITS programme conducted at King’s
College London, in association with Oxford University, University of Newcastle and Oxford
Health NHS Trust. Copyright of the original FITS manual is held by Dr Jane Fossey (Oxford
Health NHS Trust) and Dr Ian James (University of Newcastle).
With special thanks to all the Dementia Care Coaches & care homes who took part for their
many examples of good practice, dedication, creative thinking, compassion and hard work
implementing learning in their homes and making a difference to the lives of people with
dementia in their care.
Brooker, D.; Latham, I.; Evans, S.; Jacobson,N.;Perry,W.;Bray,J.; Ballard,C.; Fossey,J. & Pickett,J.
(2015) FITS into Practice: translating research into practice in reducing the use of antipsychotic medication for people with dementia living in care homes Ageing & Mental Health
available online: DOI:10.1080/13607863.2015.1063102
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