@DEMCOMstudy
Evaluating Dementia Friendly
Communities (DFCs) in England:
Insights from Phase 1 mapping of DFCs with
an online presence
Jan 2017 – Jun 2019 (30 months)
Presenter: Marina Buswell
Outline
• Background
• Study Aims and
Overview
People drive
forward
dementia
friendly
initiatives
• Phase 1 initial findings (NB: Subject to review!)
• Next Steps
Background
• Community Engagement for dementia
Evidence Synthesis for Alzheimer’s Society by
CRIPACC, University of Hertfordshire
People drive
• Research on Age-Friendly
Cities (AFCs) by
forward
dementia
Universities of Liverpool,
Cambridge &
friendly
initiatives
Sheffield (2013-2017)
through School for
Public Health Research
• Development of an evaluation tool for AFCs,
based on fieldwork in Liverpool
(Age-Friendly Cities: tools and engagement seminar 20 June, 15:30, FPH 2017)
Community Engagement Evidence Synthesis: Key Ideas
 Compassion: ‘we must do something’ driven by concern for the
wellbeing of people affected by dementia
 Utilitarian: ‘we must do something’ driven by practical cost-benefit
or utilitarian analysis
 Rights-based: ‘we should not be excluded’ driven by a social
justice/disability rights/citizenship based perspective
awareness and understanding
of dementia
People drive
forward
dementia
friendly
initiatives
SUSTAINABILITY
Presence is not
the same as
participation
Potential in
assets
based
approaches
Community Engagement Evidence Synthesis: Key Findings
People living with dementia have a right to
Awareness keep living in and be part of their community
Activities
different sources of support to enable people to,
 continue to feel comfortable in place
 keep and make new social connections
 contribute as much as they want and are able
Gaps identified
People drive
forward
dementia
friendly
Costs of programmes and
initiatives
activities are not well recorded
People drive
forward
dementia
friendly
Is there another or parallel
initiatives
motivation – the personal
or defined
connection?
Understanding the impact of
the disease trajectory and
how rights-based approaches
apply beyond the early
stages of dementia.
The use of CE as a tool to
promote dementia prevention
messages to the whole
community
Study Aims and Overview
To understand how different types of Dementia Friendly Communities
(DFCs) work, what is needed to sustain them, and how they help people
living with dementia and supporters to live well
To arrive at an evidence-based framework for evaluating DFCs
Phase 1 (ms 1-6):
Mapping of DFCs
•
Phase 2 (ms 3-12):
Narrative overview of 100 DFCs in England
People drive
• Map
DFC provision in relation to prevalence
forward
dementia
Piloting
friendly of evaluation tool
initiativesin 2 DFCs (Peterborough; Sheffield)
• Fieldwork
•
Work with local steering groups
•
Pilot test & adapt an evaluation tool originally developed for
Age-Friendly Cities (AFCs)
→ Detailed insights into both pilot DFCs
→ Dementia-specific evaluation tool
Phase 3 (ms 12-30): Case studies
•
Apply the adapted evaluation tool to 3-4 further DFCs
Protocol Definition
A Dementia Friendly Community (DFC) can
involve a wide range of people,
organisations and geographical areas.
A DFC recognises that a person with
dementia is more than their diagnosis and
that everyone has a role to play in
supporting their independence and
inclusion
Sample 100 DFCs in England with online presence
91 Communities had a
location in England.
9 National
Communities
5 5
13
60
Rights Based
Seldom Heard
Location
17
Experience
Organisation
Emerging Findings (from 91/100 DFCs)
Overall output:
“A narrative account
of
the
range
and
People drive
forward
focus of different
initiatives, the
dementia
population targeted
(reach),
friendly
initiatives
resources that are used to maintain
and how effectiveness and impact are
measured”
Maps of location of DFCs with prevalence and diagnosis rates
• There are more CCGs with a DFC than
without a DFC
• DFCs are spread around the country where
there are likely more people with dementia,
with a particular concentration in the north of
England and around London.
• There appears to be a gap in the Midlands
where there are fewer DFCs
Sources: https://www.england.nhs.uk/mental-health/dementia/monthly-workbook/, CFAS estimates calculated based on CFAS data and factoring in
population projections from the ONS
Next Steps
Development of the
evaluation tool at case
study sites informed by
Phase 1 findings and
theoretical framework
from evidence synthesis
People drive
forward
dementia
friendly
initiatives
Example output (fictional) from 10 input areas of the evaluation tool
Core Team and Contact details
Professor Claire Goodman,
University of Hertfordshire (lead)
[email protected]
Dr Stefanie Buckner,
University of Cambridge
Dr Marina Buswell,
University of Hertfordshire
[email protected]
[email protected]
– Phases 2&3
– Phase 1
Dr Louise Lafortune,
Professor Tony Arthur (UEA)
University of Cambridge
Dr Elspeth Mathie (UH)
Dr Andrea Mayrhofer (UH)
Dr Christopher Skedgel (UEA)
Michael Woodward (UEA), [email protected], – maps
Nicole Darlington (UH), [email protected] – general
Dr Anne Killett (UEA)
Patient and Public involvement (PPI)
We want to include people affected by dementia
1) as research participants (e.g. interviewees), and
2) in advisory & co-researcher roles
Research Management Team
Study steering group
2 PPI contributors/meeting
2-3 PPI contributors
Comment on aspects of the study as they
arise
People drive
Advise on strategic direction of study
Experts by experience
Groups of 3-4 PLWD/carers in
Herts/Cam/Nor
forward
dementia
friendly
initiatives
Existing PPI groups
Groups in Herts/Cam/Nor
Comment on research documents
Comment on aspects of the study as they
arise
Steering groups in case study sites
Co-researchers in case study sites
2-3 PPI contributors, incl. PLWD/carers
Small number of PLWD in each site
Contribute local knowledge & experience
Support data collection locally
Selected References
Goodman C, Buswell M, Russell B, Bunn F, Mayrhofer A (2016). Community Engagement Evidence Synthesis: A final
report for Alzheimer’s Society. Centre for Research in Primary and Community Care (CRIPACC), University of
Hertfordshire, Hatfield, UK.
O’Mara-Eves A, Brunton G, McDaid D, Oliver S, Kavanagh J, Jamal F, et al. Community engagement to reduce
inequalities in health: a systematic review, meta-analysis and economic analysis. Public Heal Res [Internet]. 2013;1(4):1–
526. Available from: http://www.journalslibrary.nihr.ac.uk/phr/volume-1/issue-4
O’Mara-Eves A, Brunton G, Oliver S, Kavanagh J, Jamal F, Thomas J. The effectiveness of community engagement in
public health interventions for disadvantaged groups: a meta-analysis. BMC Public Health [Internet]. 2015;15:129.
Available from:
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=4374501&tool=pmcentrez&rendertype=abstract
Holland J. Being the Talk of the Town : Developing Dementia Friendly Communities ESRO Research Findings. 2014;1–
42.
Lin S-Y, Lewis FM. Dementia Friendly, Dementia Capable, and Dementia Positive: Concepts to Prepare for the Future.
Gerontologist [Internet]. 2015;55(2):237–44. Available from:
http://gerontologist.oxfordjournals.org/cgi/doi/10.1093/geront/gnu122
Bartlett, R. Scanning the conceptual horizons of citizenship. Dementia 15, 453–461 (2016).
Neighbourhoods and Dementia: people, spaces and places http://www.neighbourhoodsanddementia.org/
’Imogen Blood & Associates’. In partnership with Innovations in Dementia Evidence Review of Dementia Friendly
Communities European Union Joint Action on Dementia. 2017;(January).