“Getting To Know Me”: A Greater Manchester
training resource for supporting people with
dementia in general hospitals
Presentation by Professor John Keady [on behalf of the project ream]
Berlin, October 2014
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
Salford:
•
Picture of manchester
Thank you to …
• Our funders between 2010-2013: HIECs are partnerships
between NHS organisations, the Higher Education sector, and
companies within industry
• My fellow grantholders: Dr Ruth Elvish (Clinical
Psychologist), Simon Burrow (Social Worker and
Director of the MSc in Dementia) and Kathryn Harney
(NHS Research Manager)
• All participants and contributors over the 3 years of
the study
• The Bosch Foundation
Presentation Format
• Background and Context
• Design, Piloting and Final Analysis of
the Getting to Know Me materials
• Next Steps
• Questions
Background and Context
______________________________________________________________________________________________
alzheimers.org.uk
UK: The number of people with dementia will double in the next
40 years
______________________________________________________________________________________________
alzheimers.org.uk
Recommendations
1. Improve awareness and understanding
2. Improve health and
care systems
3. Ensure that people have
information and support
4. Make sure that people are
recognised as active
citizens
5. Increase the amount of research
______________________________________________________________________________________________
alzheimers.org.uk
People with dementia in general
hospitals: Context
• Up to 25% of hospital beds occupied by people with dementia
(Alzheimer’s Society, 2009)
• A stay in hospital is likely to be longer for a person with
dementia
• Dementia often goes unidentified during admissions to general
hospitals, and there is a particularly high mortality rate
amongst those not accurately diagnosed
• From April 2013, the Department of Health has extended the
Commissioning for Quality and Innovation (CQUIN) to include
measures of the quality of dementia care in hospital and
support for carers of people with dementia. [The Prime
Minister’s Challenge on Dementia – progress update]
Experiences of people with dementia in
general hospitals
• 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
National Dementia Strategy Objectives
for England: 2009 (ended April 2014)
• Raise awareness of dementia
• Telecare and housing support
• Early Diagnosis
• Care Homes
• Information
• End of life care
• Easy access to care
• Effective workforce
• Peer support networks
• Joint commissioning strategy
for dementia
• Improve community personal
support
• Assessment and regulation
• Implement the New Deal for
Carers
• Research – causes and
treatments
• Improve quality of care in
general hospitals
• Effective regional support to
conduct the strategy
• Improve intermediate care
• Reduce anti-psychotic
prescriptions
Prime Minister's Challenge on Dementia: 2012
PM's Challenge
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
Design, Piloting and Final
Analysis of the ‘Getting to
Know Me’ materials
People involved
– University of Manchester: Dr Ruth Elvish, Simon Burrow,
John Keady, Rosanne Cawley, Kati Edwards, Jenna King,
Abi Tarran-Jones, Dr Pamela Roach
– People with dementia and carers: Brian Briggs, Dr 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
“Dementia is not an identity,
it is a label...I have dementia: I
also have a life.”
“Getting to Know Me” study
Study Design
• 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
“Getting to Know Me” study
Study Design
Phase 1: Literature review on
existing educational materials
Phase 1: 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
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
“Getting to Know Me” study
Study Design
Phase 2: Design of training
materials and evaluation
Design of training materials and
evaluation
• Colours and design influenced by people with
dementia
• Project named by Ann Johnson
• The science is important but we wanted the training
materials to be accessible and understandable
• Following the review, we needed to design some
new measurement scales that looked at staff
confidence and staff knowledge about dementia.
This was incorporated into the pilot phase.
• Always an emphasis on dementia?
Design of training materials and
evaluation
• Small group and face to face training preferred but
need to remain flexible to organisational demands
• Training included DVD clips that involve people with
dementia and their carers
• Training the trainers model preferred
• Each session takes around 1 hour to complete;
• There are 6 sessions in total;
• We based this number, the timing and flexible nature
of the module structure on an existing study in the
area
Training Programme
Session 1
Dementia: an introduction
Session 2
Seeing the whole person
Session 3
Communication
Session 4
The impact of the hospital
environment
Session 5
Knowing the person
Session 6
A person-centred understanding of
behaviour that challenges
Training Pack: Contents
• Manual for trainers
• Booklet for staff
• “Getting to Know Me” card
• Communications skills mini-guide
• Disc 1 and 2
• Evaluation form
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)
Adapted from from
Kitwood (1997)
Imagine...
You are sitting in unfamiliar clothing, beside a bed in a room with three other beds,
strange equipment and lockers, you think it might be a hospital but you are not sure
You cannot recall how you got here and you are without your phone, keys and
personal belongings
You do not know what is about to happen but you have a sense of unease
The smells, noises, sights and people – those who appear ill and those in uniform
moving about with purpose – are all confusing 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 do?
Structure of the Research Design
• Phase 2: Pilot site: Royal Bolton Hospital NHS Foundation
Trust: on
• Phase 3: Training the trainers
• Phase 4: Salford Royal NHS Foundation Trust, Trafford
Healthcare NHS Trust, Central Manchester University Hospitals
NHS Foundation Trust (500 staff and counting)
• 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
Design of training materials and
evaluation
• Pilot site (71 training episodes) then more extensive
use across the North West of England
• People with dementia and care partners involved
throughout this process: focus groups and other
methods
• Regular meetings kept the project on scale, one
time and on budget: a dissemination grant helped to
fund the more extensive dissemination and also the
uploading of documents and the DVD on the website
Psychometric properties for the Confidence in Dementia Scale (n=115).
a Response range 1-5, not able-very able.
Rank order
Itema
Mean
(SD)
1
I feel able to understand the needs of a person with
dementia when they cannot communicate well
verbally
I feel able to interact with a person with dementia
when they cannot communicate well verbally
2.58
(0.76)
2.86
(0.82)
0.86
0.90
I feel able to manage situations when a person with
dementia becomes agitated
I feel able to identify when a person may have a
dementia
I feel able to gather relevant information to
understand the needs of a person with dementia
I feel able to help a person with dementia feel safe
during their stay in hospital
I feel able to work with people who have a diagnosis
of dementia
I feel able to understand the needs of a person with
dementia when they can communicate well verbally
3.02
(0.86)
3.02
(0.74)
3.15
(0.89)
3.37
(0.85)
3.54
(1.00)
3.54
(0.86)
0.95
0.90
0.91
0.90
0.92
0.90
0.88
0.90
0.91
0.91
0.92
0.90
I feel able to interact with a person with dementia
when they can communicate well verbally
3.86
(0.85)
0.88
0.89
2
3
4
5
6
7
8
9
KMO if Cronbach’s alpha
item
if item deleted
deleted
0.86
0.90
Outcome measures (1)
•
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)
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_______
Table 2: Psychometric properties for the Knowledge in Dementia Scale (n=115).
a Response range 1 or 0, agree or disagree.
b Items 1, 4, 7, 8, 10, 12, 14, & 16 were reverse scored. Thus disagreement with these statements
reflected a correct response.
Rank
order
Itema
1
KMO if item
deleted
Cronbach’s alpha
if item deleted
0.72
0.71
2
Anger and hostility occur in dementia mostly because the “aggression” part of 0.52 (0.50)
the brain has been affectedb
Dementia is a general term which refers to a number of different diseases
0.59 (0.49)
0.62
0.71
3
4
Dementia can be caused by a number of small strokes
People with dementia will eventually lose all their ability to communicateb
0.59 (0.49)
0.61 (0.49)
0.55
0.71
0.70
0.69
5
A person with dementia’s history and background play a significant part in
their behaviour
A person with dementia is less likely to receive pain relief than a person
without dementia when they are in hospital
People with dementia who are verbally aggressive nearly always become
physically aggressiveb
When people with dementia walk around it is usually aimlessb
Permanent changes to the brain occur in most types of dementia
Brain damage is the only factor that is responsible for the way people with
dementia behaveb
Physical pain may result in a person with dementia becoming aggressive or
withdrawn
People who have dementia will usually show the same symptomsb
Currently, most types of dementia cannot be cured
0.65 (0.48)
0.68
0.71
0.70 (0.46)
0.72
0.71
0.77 (0.42)
0.80
0.68
0.79 (0.41)
0.79 (0.41)
0.81 (0.40)
0.63
0.55
0.70
0.70
0.71
0.70
0.86 (0.35)
0.72
0.71
0.86 (0.35)
0.88 (0.33)
0.66
0.82
0.70
0.71
People with dementia never get depressedb
My perception of reality may be different from that of a person with
dementia
It is possible to catch dementia from other people
0.93 (0.26)
0.94 (0.24)
0.57
0.70
0.71
0.69
0.99 (0.09)
0.57
0.70
6
7
8
9
10
11
12
13
14
15
16
Mean (SD)
Outcome measures (2)
Knowledge in Dementia Scale:
– 16-item self-report questionnaire
– Good internal consistency (Cronbach alpha = 0.66, KMO = 0.76)
(n=573)
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 PILOT 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)
Training the Trainers: 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.
Evaluation of the training programme (phase 4)
•
•
•
•
Participants (n=468)
– 52% (n=242) nurses; 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 (preMedian = 27, post-Median = 21), z=11.06, p<0.001, effect size r=0.51
Qualitative Feedback
•
‘How to be more aware of seeing the person, rather than the
dementia.’
•
‘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.’
A senior nurse for older people at one of
the participating NHS Trusts said:
”It’s so important for the care of people
with dementia that all staff understand
them and how best to meet their needs.
The programme can be delivered in a
very flexible way which means it can be
accessed easily. Our staff have
benefited greatly from the training and
therefore so have our patients.”
Conclusion/discussion points
• Following the “Getting to Know Me” programme, confidence in
working with people with dementia increased and knowledge in
dementia improved.
• 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’.
• 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 training materials are available for free download:
www.gmhiec.org.uk
• Elvish, R., Burrow, S., Cawley, R., Harney, K., Graham,
P., Pilling, M., Gregory, J., Roach, P., Fossey, J. and
Keady, J. (2014). ‘Getting to Know Me’: The
development and evaluation of a training programme for
enhancing skills in the care of people with dementia in
general hospital settings. Aging & Mental Health, 8:4,
481-488. DOI: 10.1080/13607863.2013.856860
Next Steps
Collaboration with
Germany
•
Collaboration with the Diaconical University of Applied Sciences (FHdD)
Bielefeld
Prof. Michael Löhr, PhD
Chair in Psychatric Nursing
Ruediger Noelle, PhD
Ressearch assistant
Translation process
• First contact between Ruth Elvish, Simon
Burrow, John Keady and Michael Löhr in Stirling
in July 2013
• Start of the translating process in December
2013
– The translation process was led by Ruediger
Noelle
– End of the translation process April 2014
The first training experience
The first traning experience
• The first training took place in a
department for vascular surgey
• The training was funded by the
dementia project of the Bosch
Foundation.
• 30 staff members were trained
The first traning experience
• A big interest by delegates (nurses, nurse assistance,
facility staff, physical therapists, e.g.) but less
attendance by doctors
• For example we showed the original video with Ann,
when she advised: It could helpful to ask the patient,
what kind of caring is necessary? The conclusion of
the delegates was to realize that people with dementia
have the same needs as themselves, but in many
cases communication is hard to follow.
• Only a little bit of knowledge is the key for a change
process by staff
• Training supplemented by the use of YouTube clips
Possible consequences of cognitive
impairments
Difficulties with recognition,
this may be objects, people,
sounds, smells etc
(sometimes referred to as
agnosia)
1. Mr Ahmed is handed a tube of
toothpaste and proceeds to apply
the contents to his hair.
2. ………………………………………
………………………………………
………………………………………
………………………………………
………………
2.10
Mögliche Konsequenzen geistiger
Beeinträchtigung
Wieder-Erkennungsprobleme bei:
Gegenständen, Personen,
Geräuschen, Gerüchen
usw.
(manchmal als Agnosia
bezeichnet)
1. Herrn Ahmed wurde eine Tube
Zahnpasta mitgebracht und nun
ist er bemüht den Inhalt in seinen
Haaren zu verteilen.
2. ………………………………………
………………………………………
………………………………………
………………………………………
………………
HB man was a trademark for cigarettes
Coffee milk
Special German reminders / icon
2.10
The Next Steps
• Layout of the training materials
• Internet publishing of the training
materials
• Running train the trainer courses
Neighbourhoods and Dementia:
A Mixed Methods Study
5-Year programme grant
Commenced 1st May 2014
Part of the PMs ESRC/NIHR Dementia
Initiative
Professor John Keady Chief Investigator:
10 Co-investigator Centres
Neighbourhoods and Dementia - Definition and Application
‘Neighbourhoods are where
we feel more or less in control
of the surroundings in which
we live, and more or less
buoyed by the status of where
we live.’
Tim Blackman (2006 )
Neighbourhoods and Dementia
• People with dementia central to the programme: EDUCATE
Group; Open Doors; ACE Club; Scottish Dementia Working
Group
• 4 work programmes:
1.
Neighbourhood Profiles;
2.
Core Outcome Set;
3.
Dementia Friendly Neighbourhoods;
4.
Neighbourhood Interventions:
– Hospitals, Couples, Deaf people with dementia
• UK Partners and Sweden: Center for Dementia Research
• 3 ESRC Studentships: 1 Scotland; 2 North West England – start
September 2015
Phase 1: Mapping the evidence base and
training in England (YRS 1-3)
Aims
1. To provide a systematic review of the current
evidence base for dementia training in
hospitals;
2. To map the variation in dementia training
currently provided to hospital staff in England;
3. To assess the impact of differences in training
upon staff knowledge, confidence and
satisfaction in interacting with dementia
patients.
Primary research questions:
1) How do variations in implementation, content and
intensity of dementia training in hospitals in England
relate to health service outcomes/process measures
(length of stay and emergency re-admissions) and staff
outcomes (such as confidence, knowledge of
dementia)?
2) What components of dementia training are most
strongly related to improved patient outcomes and staff
confidence in knowledge and skill about dementia?
Thank You
[email protected]