Volunteering for research into dementia

Overview

This information sheet is for people with dementia or relatives of people with dementia who are considering taking part in research. It looks at the information you should know before you decide to participate (or agree to your relative participating).

The term research means different things to different people, but it is essentially about finding out new knowledge that could lead to changes in treatment, policies and care.

Medical research into dementia can be divided into three basic themes: cause, cure, and care.

  • Cause: Scientific research at cellular level which will advance our understanding of dementia, particularly its causes, its effects and its diagnosis. This is done in laboratories.
  • Cure: Clinical research into treatment and management of dementia, involving testing of drugs, therapies, etc.
  • Care: Social science research into the best ways of caring for and supporting people with dementia, their partners and families.

Contents

This information sheet covers:

  • Scientific research
  • Brain tissue donation
  • Treatment and therapies
  • Clinical trials
  • Social research
  • Consent to take part in research
  • Volunteering for research
  • What happens after the research?
  • Ethics in research
  • Behind the research headlines
  • Regulations governing clinical trials

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