INTRODUZIONE

1
HOW CARERS CAN IMPROVE RESEARCH

Gabriella Salvini Porro CARER
?
2
THE CONSUMER REVOLUTION
Thanks to The Cochrane Collaboration
3
THE CONSUMER REVOLUTION

• Bmj
• January - June 1999
• 1209 articles

Thanks to British Medical Journal
4
THE CONSUMER REVOLUTION

• Consumers should help to set the research
  agenda and research priorities
• Research decisions are political as well as
  academic
• Improving the quality of research

5
THE CONSUMER REVOLUTION

• 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

6
THE CONSUMER REVOLUTION

• Researchers and consumers have the same
  interests.
• They must work together
• with mutual respect

7
THE CONSUMER REVOLUTION

• Consumer involvement in research is an extremely
  new notion
• Research fell short of patients needs
• paternalistic attitude of healthcare
  professional
• ill-preparation of consumers

Alessandro Liberati Director of the Italian
Cochrane Centre
8
THE CONSUMER REVOLUTION

• Objections
• Consumers can be
• not typical
• represented by others
• biased or partial
• manipulated

9
THE CONSUMER REVOLUTION

• Starting point
• high quality information
• working groups

10
THE CONSUMER REVOLUTION

• Summary points
• doctors acceptance
• patients or organisations
• appropriate knowledge
• equal number
• no relationship
• same criteria for admission

11
THE CONSUMER REVOLUTION

• Working with the
• consumers is
• becoming
• an imperative

12
THE HUMAN DIMENSION OF DEMENTIA

13
TOGETHER CARER AND RESEARCHER

• "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."

Harry Cayton Alzheimers Disease Society
14

• 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
• "patients", Commentary Leave well alone - BMJ
  1999 318 1756-1758.

15
PROJECT CARER

• RESEARCHERS AND CARERS TOGETHER
• Istituto di Ricerche Farmacologiche Mario Negri
• Federazione Alzheimer Italia

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PROJECT CARER

• A structured intervention to help dealing
  with behavioural disturbances
• 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

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PROJECT CARER

• CRITERIA FOR ELIGIBILITY
• Diagnosis of dementia
• Problem behaviours (? 2 SBI)
• Patient living at home
• Patient in living in Milano

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PROJECT CARER

• PHASE 1 (Screening)
• PHASE 2 (Selection)
• PHASE 3 (Randomisation)
• Group A Group B
• Structured Control
• intervention

19
PROJECT CARER

• 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

20
PROJECT CARER

• 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

21
References Kahan J, et al. Decreasing the burden
in families caring for a relative with dementing
illness. A controlled study. J Am Geriatr Soc
198533664-671 Brodaty H, et al. Effect of a
training programme to reduce stress in carers of
patients with dementia. BMJ 19892991375-1379. Mo
hide EA, et al. A randomized trial of family
caregiver support in the home management of
dementia. J Am Geriatr Soc 199038446-454. Mittel
man MS, et al. An intervention tha delays
institutionalization of Alzheimer disease
patients treatment of spouse-caregivers.
Gerontologist 199333730-740. Mittelman MS, et
al. A family intervention to nursing home
placement of patient with Alzheimer disease. A
randomized controlled trial. JAMA 1996
2761725-173 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 199711S35-S38.