UHI Millennium Institute and The University of Aberdeen working in partnership ESRC Engaging Local Authorities Scheme Building Capacity for Evidence Informed Practice in Rural and Remote Island Social Service Delivery

UHI Millennium Institute and The University of Aberdeen working in partnership Placement Two Aims –To exchange knowledge and skills on community engagement methods –To learn new knowledge and skills about engaging people with dementia and their carers –To transfer knowledge into practice in week two of placement

UHI Millennium Institute and The University of Aberdeen working in partnership Overview of Week Policy context – the big picture Lessons from the literature Methods used in research with people with dementia Methods used by engagement practitioners Personal experience of engagement practice Matching methods to context

UHI Millennium Institute and The University of Aberdeen working in partnership Levels of engagement: Arnsteins Ladder of Citizen Participation (1969) Alternatives include: Wilcoxs ladder (1994) Burns ladder (1994) Choguills ladder (1996) Problems include: - Simplistic - Assumes participation = power - Hierarchical - Different levels appropriate at different times

UHI Millennium Institute and The University of Aberdeen working in partnership Community Development (Arnstein) 50s and 60s UN support, WHO Alma Ata Declaration (1978) Consumerism – 80s and 90s Democratic participation/representation – 90s to today Policy The Story of Community Engagement

UHI Millennium Institute and The University of Aberdeen working in partnership Community Engagement Literature Patient Focus and Public Involvement (2001) Better Health Better Care (2007) Delivering for Remote and Rural Healthcare (2008) All Our Futures: Planning for a Scotland with an Ageing Population (2007) Talking the same language (Healey, 2009) Using a ruler to measure a sphere (Boutillier et al, 2001) Remote Service Futures Report (2010) Toolkits including: Age Concern England Involving Older People Partnership Toolkit or Age Concern Cymru EngAGE Toolkit (2007)

UHI Millennium Institute and The University of Aberdeen working in partnership Engaging People With Dementia How literature search carried out Findings from the research studies Guidance on implementing engagement

UHI Millennium Institute and The University of Aberdeen working in partnership Literature Search Electronic resources of UHIMI, Stirling and general web searching Creative use of key words, e.g listen;voice; hear; perspective Policy literature; How To guides; research studies A selection not comprehensive list

UHI Millennium Institute and The University of Aberdeen working in partnership Main Themes Impact of personhood and research Its very possible but challenging Still in early stages – methods development needed Tailor methods to individual and environment Communication & ethical practice Resource intensive

UHI Millennium Institute and The University of Aberdeen working in partnership Ethical Issues Central to dementia practice Boundaries between involvement and research Consent –Capacity –Family members –Process consent Diagnosis Confidentiality Protect against adverse response Dealing with evidence of abuse/unacceptable practice

UHI Millennium Institute and The University of Aberdeen working in partnership Data Collection Methods Questionnaires –unlikely to be successful with pwd Interviews –face to face/telephone; informal Focus Groups –suitable for some pwd, for some topics Observation –From DCM to more informal approaches Diaries/Patient Stories Documentary analysis – e.g. case files

UHI Millennium Institute and The University of Aberdeen working in partnership Issues About Data & Analysis Good communication essential –Language, time, pace, prompts, non-verbal, varying capacity Flexibility and creativity required Reliability and validity issues –Internal/external facilitation; repeated engagement, triangulation of sources, impact of setting Focus on attitudes, experiences, feelings –not facts and figures

UHI Millennium Institute and The University of Aberdeen working in partnership Issues About Data & Analysis Establishing and ending relationships Managing behaviour –in groups, emotions, idealized accounts, silence Creating a safe context –Familiarity, gatekeepers, diagnosis, reflective practice/support Practicalities –Recording, testing, appointments etc How to interpret metaphors, stories, non-verbal behaviour

UHI Millennium Institute and The University of Aberdeen working in partnership Dimensions of Involvement Values and Principle –Personhood, reciprocity, social inclusion Purposes and Aims –Personal benefits, decisions, improvements, attitudes Models –Power, consumerist, rights, whose agenda? Organisational Level Activities and Methods –Individual, group, participation in org processes, collective action, advocacy (Cantley et al (2005) Listen To Us!)

UHI Millennium Institute and The University of Aberdeen working in partnership Levels of Influence Views of People with Dementia Single Service Practice Organisation Wide Practice Inter-Agency Planning & Development Regional & National Policy & Planning International Individual Care Cantley et al (2005) Listen To Us!

UHI Millennium Institute and The University of Aberdeen working in partnership Objectives, Methods & Techniques Service Development Objectives Methods and Techniques (Killeen J (2001) in Cantley (ed) A Handbook of Dementia Care) Identify gaps in services for strategic plan/ locality plan Meetings with user groups/support groups/panels using semi-structured interviews/questionnaires, tape-recorders, visual aids Identify priorities for development for strategic plan/locality plan Semi-structured discussion with individuals, small groups, peer groups Use of visual aids Improve responsiveness of current services Conversational; semi-structured questionnaires. Use of visual aids Improve hands-on quality of care Feedback from individual service users via the service delivery system; input to training sessions Monitor services and quality e.g. inspection Membership of inspection team with buddies; carer membership of team; feedback on services from individuals and groups e.g residents groups Involvement in service management Formation of formal organisation managed by carers; representation on management committees by people with dementia

UHI Millennium Institute and The University of Aberdeen working in partnership Key Issues For Managers Leadership Involving range of voices of pwd Keep ethical practice at forefront Commit resources to support pwd, carers and staff Manage involvement of both pwd and carers Value views of pwd and provide feedback Balance organisational agendas with issues important to pwd Draw on experts but support staff to learn Cantley et al (2005) Listen to Us