Round Table ‘Science et Cité ’ on Dementia

1. Round Table ‘Science et Cité’on Dementia A participatory research project Caroline Moor, Simon Forstmeier, Mike Martin

2. Background • Participatory Research = • thosewhoareaffectedbyresearchare also involved in research. • Somecountrieshavepoliciesconcerninguserinvolvment (UK, AUS...) • Switzerland: • No officialpolicies on dementiaresearchoruserinvolvement in research(yet) Title of the presentation, Author

3. Continuumofparticipation in research (power) • highParticipatoryactionresearch (subjects ‘own’ research) • Participatoryresearch(‘egalitarian’ decision-making) • Involvementatcertainstagesofresearch • low ‘Volunteering’ (helpingtheresearchers) • none normal studyparticipant Title of the presentation, Author

4. Partners • Region of Zürich; expertiseandnetworks • Historyofinvolvingolderadultsin research • Allowtime forthedialoguebetweenscientistsand citizens. • Exchange of experiencesand opinionsshouldenablenewperspectiveswhichmayinteractwith and changebothresearchand everydaybehavior • Science Cafés, Festivals, Round Tables… G + B Schwyzer Foundation Title of the presentation, Author

5. 26 Round Table Members • 8 familycarers (spouse/offspring) • 8 professionals (nursing, socialwork etc.) • 8 scientists (interdisciplinary) • 1 projectresponsibleScience et Cité • 1 memberboard Alzheimer Zürich • 1 moderator Title of the presentation, Author

6. Task of Round Table Science et Cité • «Todesign andaccompany a researchproject on dementiafamilycarethatwouldprepare an empiricalbasistobetterunderstandtheirsituationandneeds.» • «Toshare all importantscientificdecisions.» • «To developrecommendationswhichcanimprovethesituation of carersand people withdementiabasedon studyresults.» • A learningbythedoingexperiment! Title of the presentation, Author

7. design study datacollection dataanalysis 2006 2007 2008 2009 interpretresults makerecommendations disseminateresultsandrecommendations Title of the presentation, Author

8. First meeting: gatheringideas

9. Shareddecisionsduring design phase • Agreeing upon mainresearchquestions • (Whatisquality of life? How good isit in different stages of dementia?WhatpredictsQoL etc.) • Conceptualandmeasurementissues • e.g. Quality of Life: • - reviewofexistingquestionnaires (wordingcan hurt feelings!) • - developmentof additional measures (e.g., diary) • Ethicalconsiderations(risks and benefits) • Inclusioncriteria and recruiting(whether and whatdiagnosis?) Title of the presentation, Author

10. Unexpectedtensions • Selectingappropriatemeasuresfromtheliterature (Moor, without RT) • Whenpresented to Round Table: • «Thisis all toomuch, somehow» «Isthisreallynecessary – all this material?» • Solution: • Pilot testswithcarersfromRound Table. Title of the presentation, Author

11. Interpreting scientific data • Data and results of data analysis need to be given sense. • Interpret and prioritize study results according to their practical relevance. • Main result No 1 (of 5) • “There can be quality of life in every phase of dementia.” Title of the presentation, Author

12. Interpreting carers quality of life (SEIQoL-DW) Title of the presentation, Author

13. Translating scientific results into practical recommendations for all stakeholders • e.g. INDIVIDUALITY • Result: QoLdefined and predicted in individually quite diverse manners. • Thereforerecommendations: • …highlight the need for a broad range of support opportunities • … say why individual-centered counsellingis important • … suggesthowtosupportfamilies’ self-determination • … suggestinvolvingcarersin developingservicesandcommunityplanning Title of the presentation, Author

14. 4‘000 printedexemplars • Downloaed: • www.zfg.uzh.ch Title of the presentation, Author

15. Advantages for research and practice • Research • Recruiting easier (public interest, media) • Inclusionofconceptsotherthanthose in literature(self-determination, difficultieswithaccepitinghelp, relationshipchangesaspartofQoL) • More pressure to development new instruments • Re-thinking(in)compatibilitybetweenscientificstandardsand ‚reality‘ • Practice • Being part of scientific practice experienced as further education • More meaningful and better-accepted results and recommendations • Widespread dissemination of results Title of the presentation, Author

16. Personal experience? • Generally positive: • Learning scientific (analytical) way of thinking is interesting • Study results have impact on own professional views (e.g. dyad relationship) • Deeper understanding of matter due to interdisciplinary discussions • Difficulties: • “Scientists tend to talk too much – I felt overwhelmed at times” Title of the presentation, Author

17. Challenges with participatory methodology • Finding a common language needed time and nerves • Scientific standards will be questioned by practical experts • “Are all these questionnaires really necessary?” • Future development • More scientific education necessary to collaborate more meaningfully? Title of the presentation, Author

18. Eulen Award 2011 • www.stiftung-generationplus.ch Title of the presentation, Author

19. Thankyou! • Familieswhoparticipated • Members of Round Table Science et Cité • Help withrecruitingfamiliesanddisseminatingresults: • Selfhelpgroups, memoryclinics, daycenters, generalpractitioners, churches, local press… • G + B Schwyzer Stifungforfunding Title of the presentation, Author