UHI Millennium Institute and The University of Aberdeen working in partnership Engagement with People with Dementia and their Carers 15 th June 2010

UHI Millennium Institute and The University of Aberdeen working in partnership Aim - Test methods learnt and gather user and/or carer views to inform the improvement plans Todays Presentation Importance of Placement 2 Deciding Methods of Engagement Themes Recommendations

UHI Millennium Institute and The University of Aberdeen working in partnership Placement 2 Study Week – Inverness Martha Kirby …striving for the inclusion of people with dementia and their right to have their voice heard… Learning about engagement tools and prompts such as flash cards and technology

UHI Millennium Institute and The University of Aberdeen working in partnership Engagement Plans in Orkney OUR PLANNING Short Life Local Project Team Formed Carers Group Consultation Specifically set up for engagement purposes People with Dementia Individual consultation Questions, prompts and observation Set in a familiar setting

UHI Millennium Institute and The University of Aberdeen working in partnership What did we do? CARERS ENGAGEMENT Carers invited by an individual letter through Crossroads Service Open adverts in local media Facilitated discussion groups Discussion to be recorded and transcribed Provided transport and care if needed Held in a range of venues on Orkney mainland Held at different times Planned topics:- Help received (from family, friends, and council services and others) Views and experiences of services Barriers to services

UHI Millennium Institute and The University of Aberdeen working in partnership What did we do? PEOPLE WITH DEMENTIA Undertook literature search about best practice of engagement with people with dementia –found very little published research Worked in partnership with Day Centre Staff, staff would be asking the questions Discussion would be recorded Consent forms were developed A suitable Observational Tool was developed Made prompts of cards of Smiley/Frowney faces representing yes/no/unsure Talking Mats sourced Questions designed using open and closed questions Planned Topics:- Day centre and life at home

UHI Millennium Institute and The University of Aberdeen working in partnership The Engagement Week! 3 days Monday 24 th May, Tuesday 25 th May and Wednesday 26 th May 4 focus groups (Kirkwall, Stromness, Dounby) 18 carers attended (4 men) 11 people with dementia interviewed from Day Centres (2 men)

UHI Millennium Institute and The University of Aberdeen working in partnership Results - Carers Engagement Audio recorded, 3 transcribed Short anonymised report for circulation Main Themes:- –Barriers to getting help –Diagnosis –Information –Support from family and friends –Service responsiveness –What Helps Carers –Gaps in Services

UHI Millennium Institute and The University of Aberdeen working in partnership Positive Comments Day centre staff highly praised Teams have improved Home Care District nurses and Mental Health Team help access services Carers support group – information & support Physical aids & adaptations make life easier

UHI Millennium Institute and The University of Aberdeen working in partnership Perceived Gaps Overnight care at home Training for Home Care staff on dementia Dress Code for Home Care staff Wider respite options including at home Carers support group to meet also in eve More time for Home Care visits – for enablement/new carers Dementia Café – safe place to meet Easier to know who to contact Resources for activities lending scheme Wider range of books and resources in library

UHI Millennium Institute and The University of Aberdeen working in partnership Results- People with Dementia Short anonymised report for circulation Main Themes:- –Positive about the day centre –The main meal is enjoyed –Enjoy the company/people to chat to –Family members do a lot of the help at home –Activities they do at home involve a lot of watching – watching the birds, the TV, watching out the window, watching the boats go past –No strong desire for more help

UHI Millennium Institute and The University of Aberdeen working in partnership Positive Comments Look forward to attending the Day Centre Enjoy attending the Day Centre The Food All positive about the bus journey Enjoy the company Enjoy the range of activities including games and exercises Good interaction with the staff

UHI Millennium Institute and The University of Aberdeen working in partnership Positive Comments When someone else has cooked it, it tastes a little better, why I dont know but no dishes to wash up after, thats the best part of it I dont go to very much – I do look forward to coming here At home Im on my own so when Im here Ive somebody to speak to and thats makes and difference Its just grand company, I just love coming here, I really enjoy my outing here I just like the banter and I like the games, oh yes, very good and the foods good definitely Going home is the worst bit

UHI Millennium Institute and The University of Aberdeen working in partnership What they (would) like to do Meals out at local hotels Runs in the car Sewing/knitting Bowling Snooker Likes working with animals Reading Having a pet Music Gardening Watching TV Watching from the window Looking at photos Going for a walk To the beach

UHI Millennium Institute and The University of Aberdeen working in partnership Limitations of engagement All arranged in a short space of time Questionnaires never piloted Some clients did not like symbols or the cards Only engagement with people with dementia who use the Day Centres Not the same carers and people with dementia Engagement only on Orkney mainland Difficult to tell if people with dementia expressing own views or to keep staff happy

UHI Millennium Institute and The University of Aberdeen working in partnership Strengths Good partnership working Groups held at different times Groups held at different places Engaged directly with people with dementia about their views Some clients liked the symbols and the prompt cards Interviews recorded

UHI Millennium Institute and The University of Aberdeen working in partnership Next steps What next? Report to completed the engagement process Outputs to feed into ELLA Project Action Plan Outputs feed in to Dementia Workstream to inform new Dementia Strategy

UHI Millennium Institute and The University of Aberdeen working in partnership Thank you – Ann Clark Martha Kirby Lynda Bradford Lynne Spence