Engagement with People with Dementia and their Carers 15 th June 2010

1. Engagement with People with Dementia and their Carers 15th June 2010

2. Aim - Test methods learnt and gather user and/or carer views to inform the improvement plans Today’s Presentation • Importance of Placement 2 • Deciding Methods of Engagement • Themes • Recommendations

3. 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 Placement 2

4. 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

5. 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

6. 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

7. The Engagement Week! • 3 days • Monday 24th May, Tuesday 25th May and Wednesday 26th May • 4 focus groups (Kirkwall, Stromness, Dounby) • 18 carers attended (4 men) • 11 people with dementia interviewed from Day Centres (2 men)

8. 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

9. 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

10. 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

11. 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

12. 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

13. Positive Comments • “When someone else has cooked it, it tastes a little better, why I don’t know but no dishes to wash up after, that’s the best part of it” • “I don’t go to very much – I do look forward to coming here” • “At home I’m on my own so when I’m here I’ve somebody to speak to and that’s makes and difference” • It’s 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 food’s good definitely” • “Going home is the worst bit”

14. What they (would) like to do • Having a pet • Music • Gardening • Watching TV • Watching from the window • Looking at photos • Going for a walk • To the beach • Meals out at local hotels • Runs in the car • Sewing/knitting • Bowling • Snooker • Likes working with animals • Reading

15. 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

16. 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

17. 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

18. Thank you – • Ann Clark • Martha Kirby • Lynda Bradford • Lynne Spence