Expectations about Alzheimer’s disease

1. Expectations about Alzheimer’s disease Neil Drummond PhD, Primary Care Research and Development Group, Department of Family Medicine, University of Calgary James Silvius MD, Division of Geriatric Medicine, Calgary Health Region Susan Slaughter MSc(A) RN, Primary Care Research and Development Group, Dept of Family Medicine, University of Calgary Jennifer Amy Janzen, Primary Care Research and Development Group, Dept of Family Medicine, University of Calgary Sarah Jacobs BSc, Primary Care Research and Development Group, Dept of Family Medicine, University of Calgary William Dalziel MD, Regional Geriatric Assessment Programme, Ottawa-Carlton Dementia Net: Bridging Gaps in Service Provision

2. On behalf of the DementiaNET Research Team: Transitions and Dementia Period leading up to a diagnosis is an important transition in the experience of lay people (patients and caregivers), and for health care providers “What will happen?” the course of the disease care and treatment lifestyle and quality Dementia Net: Bridging Gaps in Service Provision

3. Why are expectations important in health care? • How large is the placebo effect? Dementia Net: Bridging Gaps in Service Provision

4. How large is the placebo effect? • 30% Dementia Net: Bridging Gaps in Service Provision

5. How large is the placebo effect? • 50-55% Dementia Net: Bridging Gaps in Service Provision

6. What is a health expectation? • Thomson and Sunol (1995) • “ideal expectations (preferred) • “predicted” expectations (actual) • “normative” expectations (what should happen) • “unformed” expectations (?) • Conceptual model was developed to help understand satisfaction Dementia Net: Bridging Gaps in Service Provision

7. How do expectations influence behaviour and attitudes in relation to Alzheimer’s disease? • Theoretical and documentary research • Review of the psychological literature on expectancies • Empirical research • Exploratory ethnographic pilot study Dementia Net: Bridging Gaps in Service Provision

8. Conceptual Model for the Process of Expectation Development Precipitating Phenomenon Dementia Net: Bridging Gaps in Service Provision

9. Precipitating Prior Phenomenon Understanding Dementia Net: Bridging Gaps in Service Provision

10. Precipitating PriorCognitive Processing Phenomenon Understanding Dementia Net: Bridging Gaps in Service Provision

11. Precipitating PriorCognitive ProcessingExpectancy Phenomenon Understanding Formulation Dementia Net: Bridging Gaps in Service Provision

12. Precipitating PriorCognitive ProcessingExpectancyOutcome Phenomenon Understanding Formulation Dementia Net: Bridging Gaps in Service Provision

13. Precipitating PriorCognitive ProcessingExpectancyOutcomeCognitive Phenomenon Understanding FormulationProcessingAfter Outcome Dementia Net: Bridging Gaps in Service Provision

14. Precipitating PriorCognitive ProcessingExpectancyOutcomeCognitive Phenomenon Understanding FormulationProcessingAfter Outcome Dementia Net: Bridging Gaps in Service Provision

15. Precipitating PriorCognitive ProcessingExpectancyOutcomeCognitive Phenomenon Understanding FormulationProcessingAfter Outcome Dementia Net: Bridging Gaps in Service Provision

16. Precipitating PriorCognitive ProcessingExpectancyOutcomeCognitive Phenomenon Understanding FormulationProcessingAfter Outcome Dementia Net: Bridging Gaps in Service Provision

17. Precipitating PriorCognitive ProcessingExpectancyOutcomeCognitive Phenomenon Understanding FormulationProcessingAfter Outcome Dementia Net: Bridging Gaps in Service Provision

18. Precipitating PriorCognitive ProcessingExpectancyOutcomeCognitive Phenomenon Understanding FormulationProcessingAfter Outcome Dementia Net: Bridging Gaps in Service Provision

19. Precipitating PriorCognitive ProcessingExpectancyOutcomeCognitive Phenomenon Understanding FormulationProcessingAfter Outcome Dementia Net: Bridging Gaps in Service Provision

20. Precipitating PriorCognitive ProcessingExpectancyOutcomeCognitive Phenomenon Understanding FormulationProcessingAfter Outcome Dementia Net: Bridging Gaps in Service Provision

21. Precipitating PriorCognitive ProcessingExpectancyOutcomeCognitive Phenomenon Understanding FormulationProcessingAfter Outcome Dementia Net: Bridging Gaps in Service Provision

22. Future work • Validate the conceptual model • Data which supports it? • Data which rejects it? • Data which would indicate we should modify it? • Develop a clinical support tool to measure types and strengths of expectations about Alzheimer’s disease Dementia Net: Bridging Gaps in Service Provision

23. Empirical pilot study • Open-ended, semi-structured, discursive interviews with: • 4 newly diagnosed patients • 4 caregivers • 4 physicians • 4 nurses • 4 community pharmacists • 4 policymakers Dementia Net: Bridging Gaps in Service Provision

24. What are your expectations about anticholinesterase treatment? Dementia Net: Bridging Gaps in Service Provision

25. What are your expectations about anticholinesterase treatment? • Patients and caregivers expressed fairly strong expectations that the treatment would either halt or slow cognitive decline • Care providers expressed uncertainty • Policymakers expressed expectations that the treatment would not be effective Dementia Net: Bridging Gaps in Service Provision

26. DementiaNET • DementiaNET is supported by a New Emerging Team grant from the Institute of Aging of the Canadian Institutes of Health Research, and has study centres in Calgary, Ottawa, Vancouver and Toronto. Dementia Net: Bridging Gaps in Service Provision