2. Gabriella Salvini Porro CARER HOW CARERS CAN IMPROVE RESEARCH HOW CARERS CAN IMPROVE RESEARCH  

3. THE CONSUMER REVOLUTION REVOLUTION Thanks to The Cochrane Collaboration

4. Bmj: January - June 1999 1209 articles THE CONSUMER REVOLUTION REVOLUTION Thanks to British Medical Journal

5. Consumers should help to set the research agenda and research priorities Consumers should help to set the research agenda and research priorities –Research decisions are political as well as academic –Improving the quality of research THE CONSUMER REVOLUTION REVOLUTION

6. Quality of the research Quality of the research –Different perspectives from researchers –Adviser on the outcomes to be studied –Co-operation to complete the research –Assessment of the quality of consent –Encouragement of recruitment –Publication of research –Implementation of the results THE CONSUMER REVOLUTION REVOLUTION

7. R esearchers and consumers have the same interests. T hey must work together with mutual respect THE CONSUMER REVOLUTION REVOLUTION

8. Consumer involvement in research is an extremely new notion Research fell short of patients needs –paternalistic attitude of healthcare professional –ill-preparation of consumers THE CONSUMER REVOLUTION REVOLUTION Alessandro Liberati Director of the Italian Cochrane Centre

9. Objections Objections Consumers can be  not typical  represented by others  biased or partial  manipulated THE CONSUMER REVOLUTION REVOLUTION

10. Starting point – high quality information – working groups THE CONSUMER REVOLUTION REVOLUTION

11. Summary points Summary points – doctor’s acceptance – patients or organisations – appropriate knowledge – equal number – no relationship – same criteria for admission THE CONSUMER REVOLUTION REVOLUTION

12. Working with the consumers is becoming an imperative THE CONSUMER REVOLUTION REVOLUTION

13. T HE HUMAN DIMENSION OF D EMENTIA T HE HUMAN DIMENSION OF D EMENTIA

14. "What is now needed is an effort to bring together the two discourses; the scientific and medical and the personal and the caring, the knowledge of doctors and researchers with the understanding of carers. We need to add to the empathy, sensitivity and communication skills of the carer the knowledge of the brain which science can contribute." TOGETHER CARER AND RESEARCHER TOGETHER Harry Cayton Alzheimer’s Disease Society

15. References Goodare H, Smith R, The rights of patients in research - BMJ 1995; 310: 1277-1278. Dicker A, Armstrong D, Patients' views of priority setting in health care: an interview survey in one practice - BMJ 1995; 311: 1137-1139. Liberati A, Consumer participation in research and health care - BMJ 1997; 315: 499. Cayton H, Keeping in touch - Relationship with dementia 8th Alzheimer Europe Conference; 4/5 May 1998 Entwistle WA, Renfrew MJ, Yearley S, Forrester J, Lamont T, Lay perspectives: advantages for health research - BMJ 1998; 316: 463-466. Williamson C,The rise of doctor-patient working groups- BMJ 1998; 317: 1374-1377. Newsletter Cochrane Consumer Network, issue 5 Dec. 1998 Richards T, Patients' priorities - BMJ 1999; 318: 277. Neuberger J, Tallis R, Do we need a new word for “patient”? Let's do away with patient "patients", Commentary: Leave well alone - BMJ 1999; 318: 1756-1758.

16. RESEARCHERS AND CARERS TOGETHER –Istituto di Ricerche Farmacologiche Mario Negri –Federazione Alzheimer Italia PROJECT “CARER”

17. A structured intervention to help dealing with behavioural disturbances A structured intervention to help dealing with behavioural disturbances AIMS AIMS –to assess the frequency of behavioural disorders –to structure an intervention of information and support –to evaluate the impact on carers and patients outcomes PROJECT “CARER”

18. CRITERIA FOR ELIGIBILITY – Diagnosis of dementia – Problem behaviours (  2 SBI) – Patient living at home – Patient in living in Milano PROJECT “CARER”

19. PHASE 1 (Screening) PHASE 2 (Selection) PHASE 3 (Randomisation) Group “ A” Group “ B” Group “ A” Group “ B” Structured Control Structured Control intervention intervention PROJECT “CARER”

20. OUTCOMES Carer: stress and burden use of drugs health and social services Patient: health status cognitive deterioration functional disability use of drugs health and social services nursing home placement PROJECT “CARER”

21. PERSPECTIVES PERSPECTIVES Results from previous studies show that carer training may be an effective treatment in reducing problem behaviours, carer stress and in delaying nursing home placement PROJECT “CARER”

22. References Kahan J, et al. Decreasing the burden in families caring for a relative with dementing illness. A controlled study. J Am Geriatr Soc 1985;33:664-671 Brodaty H, et al. Effect of a training programme to reduce stress in carers of patients with dementia. BMJ 1989;299:1375-1379. Mohide EA, et al. A randomized trial of family caregiver support in the home management of dementia. J Am Geriatr Soc 1990;38:446-454. Mittelman MS, et al. An intervention tha delays institutionalization of Alzheimer disease patients: treatment of spouse-caregivers. Gerontologist 1993;33:730-740. Mittelman MS, et al. A family intervention to nursing home placement of patient with Alzheimer disease. A randomized controlled trial. JAMA 1996; 276:1725-173 Teri L, et al. Behavior and caregiver burden: behavioral problem in patients with Alzheimer disease and its association with caregiver distress. Alzheimer Disease and Related Disorders 1997;11:S35-S38.