Transcript Slide 1

Seminar:
The Getting to Know Me Study: Involving people
with dementia and carers in developing training
materials for hospital staff
John Keady
Dementia and Ageing Research Team
School of Nursing, Midwifery and
Social Work
The University of Manchester/
Greater Manchester West (GMW)
Mental Health NHS Foundation Trust
[email protected]
Bangor University: 22nd
November 2013
Seminar Format
About DART
Collaborative Research
Getting to Know Me
Questions
Salford
Population n=223,000
Estimated no: of people with
dementia n=2512 (1.1% of pop)
No of people diagnosed with
dementia n=1079 (only 43% have a
diagnosis)
Salford:
Source:http://www.innovationslearning.co.uk/subjects/geography/information/settlements
/images/uk-map.gif
Dementia and Ageing Research Theme
Clusters
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4.
Biographical and narrative work
Psychosocial interventions
Lifestyle and creative arts
Education
Transcending themes
•Family-centred practice
•Transitions
•Neighbourhoods
DART Group: PhD students
 Emma Ferguson-Coleman*; Sarah Campbell*; Jackie
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Kindell*; Xia Li*
May Yeok Koo* [Singapore]
Started 2013: Lesley Jones*; Rachel Plant*; Sarah
Hunter*:
Other PhD Supervision: Andrew Hunter* [Galway; final
year];
PhD students: Alex Hall; Edmund Chow; Helen
Beaumont; Katie Paddock
Starting 2014: 2 grant-linked ESRC studentships
The Hair and Care Project
 Dr Richard Ward
[email protected]
 Sarah Campbell
[email protected]
New Grant
NIHR: HS&DR
 Title: The detection and management of pain in
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patients with dementia in acute care settings:
development of a decision tool
Start: September 2012
End: August 2014
Team: Dowding D.W., Keady J., Closs S.J., Allcock
N., Briggs, M., Swarbrick C, Sampson E., Holmes J.,
Hulme C. and Corbett A.
Role: Greater Manchester. Research conducted
through Salford Royal NHS Foundation Trust
Award: £900,000
Walking interviews
“I used to walk around with Mike and he got to know
people, he can’t remember them now, but he does
know they’re familiar and they’ll say ‘hello’ and he
knows then he’s safe, because they’re familiar
looking… so that’s his security”
Social network mapping
“We’re all very friendly but not imposing, we’ve
all had sort of jobs and work, so we’ve learnt
that yes we’re here for each other, but not
always bopping in and out of each other’s
houses as such. We’ve got our own privacy
which is a good thing, but if any help is needed
then they’re there for you”
Recent Publication
(Journal of Clinical Nursing)
Development of the bio-psycho-social-physical model of
dementia
Involves: John Keady, Lesley Jones, Ingrid Hellström; Richard
Ward; Susan Koch; Caroline Swarbrick; Vivienne DaviesQuarrell, Sion Williams
PHYSICAL DOMAIN
 Physical Wellbeing – prevention issues and health
promotion/education
 Physical Health and Examination – assessment, observing,
maintaining health e.g. diabetes, mixed presentations
 Physical Care – personal care, diet, fluids, toilet needs, skin
care, nail care, hair care, bowel needs
 Physical Treatment – use of medications; multiple comorbidities; ethical parameters
 Physical Environment; own home to acute care to care
home; signage; personalised; recognisable
Seminar Format
About DART
Collaborative Research
Getting to Know Me
Questions
Prime Minister's challenge
on dementia: Key Points
1.
Driving improvement in health and social
care
2.
Creating dementia friendly communities
3.
Better research
Emphasis: The importance of keeping people at
home and in local communities
Auguste Deter: Case Observations
Admitted to Frankfurt am Maine insane asylum in November 1901
Displaying signs of:
 Weakening of the memory
 Persecution mania
 Sleeplessness
 Restlessness
 Unable to perform any physical or mental work
 Condition needs ‘treatment’ from the local mental
institution
Taken from the family doctor’s admission note, 1901
Auguste Deter: Early Assessment
Alzheimer’s case note entry November 29 1901:
Writing: When she has to write Mrs Auguste D, she writes
Mrs and we must repeat the other words because she
forgets them. The patient is not able to progress in
writing and repeats, I have lost myself.
Reading: She seems not to understand what she reads.
She stresses the words in an unusual way. Suddenly she
says twins. I know Mr Twin. She repeats the word twin
during the whole interview.
(p.1548)
 Auguste D died in Frankfurt am Maine on April 8 1906
aged 56 years.
Reference:
Maurerer, K., Volk, S. and Gerbaldo, H. (1997). Auguste D and Alzheimer’s disease.
Lancet, 349: 1546-1549
Auguste Deter:
Her Life Story
 Born and brought up in Cassell, Germany
 Protestant religion; female role ‘kinder,
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kirche kuche’ {children, church and kitchen}
Married at age of 23 (to Karl – a railway clerk) and moved to
Frankfurt where she stayed all her life
Remained married for 33 years ‘happy and harmonious’ –
‘rather amicable’
Had a daughter Thekla
‘Tall woman with long brown hair, brown eyes and elegantly
long fingers’
Karl struggled to pay the fees for his wife’s care; he visited
her ‘frequently’
Reference
Page, S. and Fletcher, T. (2006). Auguste D: One hundred years on.
Dementia: 5(4): 571-583
John: My Father’s Life
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‘Living in a hole’
Wrong Shoes
Lists and memory aids
Strength of our relationship
Familiarity and routine
A changed life
Reference:
Keady, J. and Keady, J. (2006). The wrong shoes; Living with memory
loss. Nursing Older People, 17(9): 36-37
Salford development:
Open Doors support network
VALUES AND VISION
 The OPEN DOORS Support Network “opens doors” for
people with dementia and carers to radically and
innovatively support the delivery and development of
dementia services within Salford [Mike Howorth]
 OPEN DOORS has been developed by the initial
collaboration from representatives from The Salford
Memory Assessment and Treatment Service, Reach
Beyond, Day Hospital and inpatient dementia services at
Woodlands and the University of Manchester, with
funding supported by Salford PCT and the University of
Manchester
Humphrey Booth Resource
Centre (Salford)
Centre of Excellence for
Dementia Care
HBRC Research Strategy
The Research Strategy and
Values has been developed
and led by people with
dementia with the collaboration
of families, services and other
organisations, including myself
HBRC: Our Values
As people with dementia we want…
 The right to run risks
 To share positive messages about living with
our dementia
 To remain connected to our everyday lives,
communities and the places where we live.
 The opportunity to take part in the research
that is done in our name.
We have Four Research ‘wants’
1. Always Remember It’s About Me
As a person with dementia I want to be
involved in research that:
- Means something to me and others in my
life
- Is about my everyday life
- Is about things I can understand and relate
to
Interactive Lunchtime Sessions
20 April What is ‘Normal’ in Normal Brain Ageing?
Facilitated by Caroline Swarbrick
What to expect in normal brain ageing
Dr Neil Pendleton (Geriatric Medicine)
Living with young onset Alzheimer’s disease
Mrs Ann Johnson (person living with dementia and Alzheimer’s Society
Ambassador)
29 May Diagnosis, Assessment and Dementia
Facilitated by John Keady
The dementia assessment process
Dr Anna Richardson (Consultant Neurologist, SRFT)
Support steps after the diagnosis: what helps and what it all means
Dr Mike Howorth (person living with dementia and facilitator of the Open
Doors Network, Salford, GMW)
2 July Assistive Technology in Dementia
Facilitated by Neil Pendleton
AT Dementia
Simon Burrow (Programme Director MSc Dementia Care, UoM)
Our life story
EDUCATE (Group of people living with dementia from Stockport)
2. To Get The Most from Life
As a person with dementia I want to be involved
in research that:
 Focuses on my abilities and not just on what I
can’t do anymore
 Helps my confidence and self-belief in what I
am doing
 Says something about my physical health as
well as my dementia
 Reaches out to others who may be isolated
3. Having a Healthy Memory
As a person with dementia I want to be involved
in research that:
 Makes life far more simple
 Exchanges ideas
 Finds out what works and why
4. Keeps Me Involved
As a person with dementia I want to be involved
in research that:
 Joins up my experience with that of other
people
 Is done locally and with my consent
 Listens to what I say and treats me as a
person
Seminar Format
About DART
Collaborative Research
Getting to Know Me
Questions
“Getting To Know Me”: A Greater Manchester
training resource for supporting people with
dementia in general hospitals
Ruth Elvish, Simon Burrow, John Keady, Kathryn Harney
University of Manchester/Royal Bolton Hospital NHS Foundation Trust/
Greater Manchester West Mental Health NHS Foundation Trust/Dementia and
Ageing Research Team
A Health Innovation and Education (HIEC) Cluster Study
Health Innovation and Education Clusters
• HIECs are partnerships between NHS organisations, the Higher
Education sector, and companies within industry
• Greater Manchester HIEC consists of 28 partners: 10 PCTs, 10
Foundation Trusts, 4 Acute Trusts, and 4 Universities
• Developed to:
– Deliver high quality health care
– Provide education and training to benefit local populations
– Promote innovation in healthcare
– Lead to adoption of research
• GM Projects include: Cancer, Dementia Care and Stroke
• HIEC Disbanded 2012
Experiences in general hospitals
• Around 25% of all hospital beds occupied by a person
with dementia
• Communication with people with dementia is often fast
paced and focused on care-giving tasks. Can lead to
reductions in interactions and independence
• Both staff, people with dementia and relatives felt staff
knowledge could be increased
• The importance of the environment was highlighted –
lighting, noise, acknowledgement that the ward is a
person’s living space
• National Dementia Strategy priority area: Commissioning for
Quality and Innovation (CQUIN) reward for hospitals offering quality
dementia care
“Getting to Know Me” study
Study Outline
• Phase 1: Literature review on existing educational
materials
• Phase 2: : Design of training materials (and evaluation –
to be discussed later in presentation)
• Phase 3: Diffusion through training the trainers in new
sites
• Phase 4: Final collection of data from new sites and
revisions to the “Getting to Know Me” training materials
Phase 1: Dementia training in general
hospitals: Outcome of literature review
• Training should comprise a mix of methods
• Training beneficial in increasing knowledge and
confidence immediately following training, however, the
long-term benefits remain largely unknown
• Face to face contact in training is important. CDROM/online learning recommended as a supplement
Dementia training in general hospitals
• Content of training packages:
– General information about dementia
– Behaviours that challenge
– Communication
– Feeding
– Environmental issues (including contrasting colours of
floors/doors, clear signs, calendars/clocks, ‘homely’
environments)
– Care planning
– Reflective practice
• No consistent use of outcome measures across studies
People involved
– University of Manchester: Ruth Elvish, Simon Burrow, John
Keady, Rosanne Cawley, Kati Edwards, Jenna King, Abi TarranJones, Pamela Roach
– People with dementia and carers: Brian Briggs, Ann Johnson,
Mike Howorth (GMW)
– Greater Manchester West Mental Health NHS Foundation Trust:
Kathryn Harney, Rilwan Adebiyi, Harry Johnson
– Royal Bolton Hospital NHS Foundation Trust: Andrew Powell,
Pat Graham, Julie Gregory, Gwen Ainsworth, Stephanie Jolly,
Gillian Zajac-Roles, Rebecca Wild, Emily Feilding, Nicola Rafter
– Salford Royal NHS Foundation Trust: Janice McGrory
– Central Manchester University Hospitals NHS Foundation Trust:
Nicola Johnson, Danielle Beswick
“Getting to Know Me” study
Study Outline
• Phase 1: Literature review on existing educational
materials
• Phase 2: Design of training materials and evaluation
• Phase 3: Diffusion through training the trainers in new
sites
• Phase 4: Final collection of data from new sites and
revisions to the “Getting to Know Me” training materials
Key training content/themes were
developed from:
Focus groups
The involvement of people living with
dementia and a family carer
Outcomes of the literature review
Training split into six sections:
Part 1 Dementia: an introduction
Part 2 Seeing the whole person
Part 3 Developing communication skills
Part 4 Impact of the hospital environment
Part 5 Knowing the person
Part 6 A person centred understanding of
behaviour that challenges
The manual guides the trainer in the
use of:
PowerPoint slides
Video clips
Exercises
“Getting to Know Me”
Supporting people with
dementia in general hospitals
Part 1: Dementia: an introduction
© University of Manchester/Greater Manchester West Mental Health NHS Foundation Trust/Royal Bolton Hospital NHS Foundation Trust
38
Aims
To reflect on the lived experience of having
dementia in the hospital setting
To be aware of the main types of dementia
and the key features of these
To consider detection/diagnosis of dementia
in hospital
Imagine...
You are sitting in unfamiliar clothing, beside a bed in a room with three other beds
and lockers, you think it might be a hospital but it is strange and unfamiliar
You cannot recall how you got here and you are without your keys, phone or money
You do not know what is about to happen but you have a sense of dread
The smells, noises, sights and people – those who appear ill and those in uniform
moving about with purpose – are all puzzling and unsettling
You look around but cannot see the face of anyone you know
Your mouth is dry and you need a drink
Occasionally, you summon the courage to call out to people who walk close by. Many
ignore you, those who stop and speak to you talk quickly in a language you can
make no sense of, and then they swiftly depart
When you get up your movements are unexpectedly slow and laboured
Finally, when you try to seek a way out of this strange and unfamiliar place, a person
in a uniform prevents you from leaving…
What might you be
thinking?
What might you be
feeling?
What might you want to
happen?
What might you do?
“Getting to Know Me”
Supporting people with
dementia in general hospitals
Part 2: Seeing the whole person
© University of Manchester/Greater Manchester West Mental Health NHS Foundation Trust/Royal Bolton Hospital NHS Foundation Trust
Aim
To present a holistic, person centred
understanding of dementia,
highlighting a range of factors that
may affect a person with dementia in
hospital
Cognitive
Impairment
The social world:
e.g. care,
relationships &
support while in
hospital...
Health
The person
living with
dementia
Hospital
Environment
Personality
Biography/Life
Story
Adapted from
Kitwood (1997)
“Getting to Know Me”
Supporting people with
dementia in general hospitals
Part 3: Communication
© University of Manchester/Greater Manchester West Mental Health NHS Foundation Trust/Royal Bolton Hospital NHS Foundation Trust
Aims
To explore a range of ways in which staff
can adapt their communication approaches
(verbally and non-verbally) to compensate
for the difficulties experienced by people
living with dementia
To explore dilemmas when communicating
with people who may have a different
perception of reality to our own
3.2
“Getting to Know Me”
Supporting people with
dementia in general hospitals
Part 4: The impact of the hospital
environment
© University of Manchester/Greater Manchester West Mental Health NHS Foundation Trust/Royal Bolton Hospital NHS Foundation Trust
Aims
To consider which aspects of the hospital
environment can be challenging for people
with dementia
To explore ideas on practical ways to
improve the physical environment
“Getting to Know Me”
Supporting people with
dementia in general hospitals
Part 5: Knowing the person
© University of Manchester/Greater Manchester West Mental Health NHS Foundation Trust/Royal Bolton Hospital NHS Foundation Trust
Aims
To explore why getting to know the person is
essential to the provision of care
To introduce the “Getting to Know Me” or
“This is me” method of gathering important
information about the person
To consider creative responses for
meaningfully occupying the person
To explore how to involve and support
families and friends
5.2
Mrs Atherton continually appears
distressed. She finds it difficult to
communicate verbally, but can
sometimes be heard calling the
name “Joe”. When staff ask about
Joe, Mrs Atherton is unable to
say.
Elizabeth Atherton
Beth
I grew up in Bradford & moved to Bolton
in my 20s when my husband, Joe, got a
job working for an engineering firm. I
worked for Wilsons - a large bakery for many years
I start the day with a cup of tea and a
bowl of muesli. I like to keep busy and
don’t like sitting around.
My daughters.
My daughters, Alison and Frances, and
my grandchildren. I sometimes call for
Joe when I’m feeling upset but he has
sadly passed away.
I like to walk (I used to be in a walking
group) and listen to music – songs from
the musicals or any Frank Sinatra. I
enjoy art but haven’t painted for a few
years.
I am very scared of needles and
hospitals! I enjoy being busy and useful.
I get lost easily and need help finding
my way around.
“Getting to Know Me”
Supporting people with
dementia in general hospitals
Part 6:
A person centred understanding
of behaviour that challenges
© University of Manchester/Greater Manchester West Mental Health NHS Foundation Trust/Royal Bolton Hospital NHS Foundation Trust
Aims
To explore meanings behind behaviours that
we can find challenging
To draw together all six parts of the training
To consider the changes staff may make to
their practice
The behaviour e.g.
shouting /pacing/resisting
care…
What we see...
What we don’t
see…
Feeling lost
Side effects of drugs
Differing perception of reality
Need for emotional
Visuoperceptual
comfort
difficulties
Anxiety
Physical e.g. need for:
Cognitive
food, fluid, pain relief,
difficulties
toilet
Fear
Need to be occupied
Delirium
(Adapted from: James, 2011)
“Getting to Know Me” - Key Messages
Focus on feelings and try
put yourself in the
person’s shoes
Try to help create a sense
of security and familiarity
See all behaviour as
having “meaning”
Provide opportunities for
meaningful activity
Think about how best to
support and involve
relatives
See the person not the
dementia
Improving care for hospital patients who are
living with dementia – next steps…
The 3 changes I will personally make are:
1.
2.
3.
“Getting to Know Me” study
Study Outline
• Phase 1: Literature review on existing educational
materials
• Phase 2: Design of training materials (and evaluation –
to be discussed later in presentation)
• Phase 3: Diffusion through training the trainers at
new sites
• Phase 4: Final collection of data from new sites and
revisions to the “Getting to Know Me” training materials
Phase 3
• Those who undertook the training the trainers course implemented
the training within their Trusts.
• 35 staff trained
• 15 (43%): Central Manchester University Hospitals NHS Foundation
Trust.
• 12 (34%): Salford Royal NHS Foundation Trust.
• 7 (20%): Trafford Healthcare NHS Foundation Trust.
• The majority of staff were from a nursing background n=22 (63%).
This included ward managers, dementia lead nurses and charge
nurses. A further 6 (17%) were from a practitioner background and a
further 7 (20%) were in a clinical educator role.
• 8 (22%) were male.
• 27 (73%) female.
“Getting to Know Me” study
Study Outline
• Phase 1: Literature review on existing educational
materials
• Phase 2: Design of training materials (and evaluation –
to be discussed later in presentation)
• Phase 3: Diffusion through training the trainers at new
sites
• Phase 4: Final collection of data from new sites and
revisions to the “Getting to Know Me” training
materials
Results: Phase 2 & 4
Participants and outcome measures
•
Staff members working on general hospital wards within the following NHS
Trusts:
– Royal Bolton Hospital NHS Foundation Trust (phase 2)
– Salford Royal NHS Foundation Trust (phase 4)
– Central Manchester University Hospitals NHS Foundation Trust (phase
4)
– Trafford Healthcare NHS Trust (phase 4)
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Outcome measures:
– Confidence in dementia scale
– Knowledge in dementia scale
– Controllability beliefs scale (Dagnan, Grant & McDonnell, 2004)
– Views about the use of deception with people with dementia (from
Elvish, James & Milne, 2010)
– Evaluation form
Outcome measures (1)
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Confidence in dementia scale:
– nine-item self-report questionnaire
– Good internal consistency without too much item redundancy (Cronbach alpha =
0.88, KMO = 0.89) (n=573)
– Direction of change consistent with hypotheses and consistent with qualitative
comments
I feel able to understand the needs of a person with dementia when they cannot
communicate well verbally.
Not able
Somewhat able
Very able
__1_________2__________3___________4__________5_______
I feel able to gather relevant information to understand the needs of a person with
dementia.
Not able
Somewhat able
Very able
__1_________2__________3___________4__________5_______
Outcome measures (2)
Knowledge in Dementia Scale:
– 16-item self-report questionnaire
– Good internal consistency (Cronbach alpha = 0.66, KMO = 0.76)
(n=573)
– Direction of change consistent with hypotheses and consistent with qualitative
comments
My perception of reality may be different from that of a person with
dementia
Agree
Disagree
Don’t know
A person with dementia is less likely to receive pain relief than a person
without dementia when they are in hospital
Agree
Disagree
Don’t know
Evaluation of the training programme (phase 2)
• Participants (n=71)
• CODE scale:
– confidence levels were significantly higher immediately after the
training (Median = 35) than immediately before the training
(Median = 29), z=-6.13 p<0.001, effect size r=-0.56
• KIDE scale:
– levels of knowledge were significantly higher immediately after
the training (Median = 15) than immediately before the training
(Median = 13), z=-4.81 p<0.001, effect size r=-0.44
• Controllability beliefs scale:
– significant decrease in scores in the post-training condition (t= 2.94 df=70 p=0.004,) with an effect size d=0.35(=2.79/7.99)
Evaluation of the training programme (phase 4)
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Participants (n=468)
– 52% (n=242) nurses; 22% (n=103) healthcare assistants; 4% (n=18)
physiotherapists/occupational therapists; 1% (n=6) housekeeping staff
– 82% female
– 68% reported receiving no prior training in dementia care
CODE scale:
– confidence levels were significantly higher immediately after the training
(Median = 36) than immediately before the training (Median = 29), z=14.68 p<0.001, effect size r=0.96
KIDE scale:
– levels of knowledge were significantly higher immediately after the
training (Median = 14) than immediately before the training (Median =
12), z=-13.59 p<0.001, effect size r=0.8
Controllability beliefs scale:
– significant decrease in scores in the post-training condition (pre-Median
= 27, post-Median = 21), z=11.06, p<0.001, effect size r=0.51
Qualitative Feedback
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‘How to be more aware of seeing the person, rather than the dementia.’
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‘People who have dementia may act in a certain way but there is meaning in
every behaviour.’
•
‘I will not stick to the normal way of pacifying a dementia patient instead I
will attempt to look at the causes and find solutions to these.’
•
‘Interaction with other members of the MDT, new ideas of ways of working.’
Communication in dementia care
•
Initial analysis on data about the use of the truth and deception suggests
findings consistent with current literature:
– Definitions of a ‘lie’
– In a person’s best interests:
– Risk of harm/neglect
– Reduce distress/agitation
– Medical care – additional theme
– In best interests of other patients/staff – additional theme
Conclusions/discussion points (1)
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Following the “Getting to Know Me” programme, confidence in working with
people with dementia increased and knowledge in dementia improved
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Before the programme, majority of staff described their confidence in
working with people as ‘somewhat confident’. Following the training,
majority of staff described their confidence as ‘very confident’
•
Key elements of training – knowledge/confidence in the areas of : i) nonverbal communication (low confidence); ii) understanding anger/aggression
(low confidence and knowledge)
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Importance of peer supervision/group reflection
•
Shorter sessions v one full day
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Link between staff knowledge/confidence and patient care
Conclusions/discussion points (2)
•
The “Getting to Know Me” programme was well-received. It is designed to
be accessible and flexible
•
Significant contributions to the design of the training materials were made
by people with dementia and relatives
•
The materials are available for free download from www.gmhiec.org.uk
(English language only)
•
The materials form part of a more substantive research bid (RCT). Decision
expected July 2013