progress on improving dementia care, support and...
TRANSCRIPT
Progress on improving dementia
care, support and research
Piers KottingNHS Innovation Accelerator Fellow
Programme Director, Office of the NIHR National Director for
Dementia Research
In other news…
£300m £150m
$100m $1bn
“People with dementia and
their carers are not
routinely offered the
opportunity to participate in
high-quality research and
there is no nationally
consistent system to enable
them to do so.”
Why has it been created?
How it works now
Researchers need volunteers
They find them in memory clinics
Postcode lottery –motivated volunteers can’t join research studies
Effective – but can be slow, and depends on right people coming along
Why has it been created?
How it works now
Researchers need volunteers
They find them in memory clinics
They also use ‘Join dementia research’
Motivated volunteers have improved opportunities @ or beyond local hospital
Quickly find volunteers, according to own criteria + people who want to become involved
Community of
consented
volunteers
National
database of
researchers
and studiesBusiness processes &
governance arrangements
The story so far - volunteers
0 500 1000 1500
Northern IrelandNorth West LondonGreater Manchester
WalesNorth East and North…
Thames Valley and South…South London
North West CoastWest Midlands
WessexEastern
East MidlandsNorth Thames
South West PeninsulaScotland
Kent, Surrey and SussexYorkshire and Humberside
West of England
Who is signing up?
15%
28%47%
10%
18-39 40-55 56-75 76+
27%
73%
Men Women
45%55%
All volunteers
Volunteers with
dementia
Age Gender
Who is signing up?
0% 10% 20% 30% 40% 50% 60%
Dementia in Huntington's Disease
Alcohol related Dementia
Dementia in Parkinson's Disease
Dementia With Lewy Bodies
Other Dementias
Frontotemporal Dementia (FTD)
Mixed Dementia
Mild Cognitive Impairment (MCI)
Vascular Dementia
Alzheimer's Disease
9%
7%
84%
Volunteer Type
With adementia
Awaiting / nodiagnosis
Withoutdementia
Diagnosis
Is this making a difference to volunteers?
Yes10%
No86%
Not sure4%
Yes81%
No13%
Not sure6%
Yes73%
No14%
Not sure13%
4479 people surveyed – 705 responses (15.7%)
Before I found out about
JDR I already knew how to
get involved in dementia
research.
JDR has increased my
awareness of what
dementia research is
going on.
JDR has made it easier
for me to take part in
dementia research.
Is this making a difference to researchers?
44% of volunteers with dementia
0 10 20 30 40 50 60
Northern IrelandKent, Surrey and Sussex
Yorkshire and HumbersideEast MidlandsNorth Thames
WalesWessex
North East and North CumbriaEastern
ScotlandWest of England
South West PeninsulaThames Valley and South Midlands
North West CoastWest Midlands
North West LondonGreater Manchester
South London
Percentage
recruitment from
JDR by region
National average
13%
Is this making a difference to researchers?
“By 2020, 25% of people
being diagnosed with
dementia will be
registering on Join
Dementia Research.”
0
5,000
10,000
15,000
20,000
25,000
15/16 16/17 17/18 18/19 19/20
Nu
mb
er
of
pe
op
le d
iag
no
se
d w
ith
d
em
en
tia
re
gis
teri
ng
an
nu
all
y
Current
0
5,000
10,000
15,000
20,000
25,000
15/16 16/17 17/18 18/19 19/20
Nu
mb
er
of
pe
op
le d
iag
no
se
d w
ith
d
em
en
tia
re
gis
teri
ng
an
nu
all
y
Current NHS Implementation
NHS registration application
Volunteer native mobile
app
Interoperability with NHS Electronic
Health Records
Multimedia information on studies
Improved functionality and study matching
Dynamic data collection to
improve screening
Online cognitive screening
How are we going to
hit the 2020 target?
New
developments
0
5,000
10,000
15,000
20,000
25,000
15/16 16/17 17/18 18/19 19/20
Nu
mb
er
of
pe
op
le d
iag
no
se
d w
ith
d
em
en
tia
re
gis
teri
ng
an
nu
all
y
Current NHS Implementation NHS Interface
0
5,000
10,000
15,000
20,000
25,000
15/16 16/17 17/18 18/19 19/20
Nu
mb
er
of
pe
op
le d
iag
no
se
d w
ith
d
em
en
tia
re
gis
teri
ng
an
nu
all
y
Current NHS Implementation NHS Interface NHS Interoperability
So what?
People affected by
dementia value being
involved in research
Your population want
to be involved in
research
Research has direct
individual and
population-level benefits
RESEARCH
SUPPORT
CARE
£1bn £1bn
Care &
supportResearch
Thank you!
www.joindementiaresearch.nihr.ac.uk
@Pkotting @Beatdementia
+44 (0)7870 215939