The DEEP-Ethics Gold Standards for Dementia Research

The DEEP-Ethics Gold Standards for Dementia Research
  • Type of resource: Training/tool
  • Keywords: Dementia, Research, Involvement, DEEP, Ethics, Gold, Standard
  • Languages: English
  • Country: United Kingdom
  • Region: European Region (EUR)
  • Publication year: 2020
  • Date submitted: 01/02/2021
  • Average ranking:
We have co-produced a new set of standards – the Dementia Enquirers Gold Standards for Ethical Research – which:
-are more flexible, and can take a considered approach to some of the grey areas
-start from the assumption that being diagnosed with dementia does not mean you necessarily lack capacity
-incorporate support for people to make their own decisions
-are realistic about how we think about risk
-want to include (not exclude), and assumes that people have got capacity to be involved (unless it is shown that they don’t) – in line with the Mental Capacity Act (and similar legislation in Scotland and Northern Ireland)
-respect the sense of urgency of the need for action and change that people with dementia feel focuses less on why the project is being done, and more on whether how it is being done is ethical
-respect the importance of equality and diversity issues, and requirements of the Equality Act for ‘reasonable adjustments’
To change the way people living with Dementia are involved in Research

To uphold our rights including to be involved in our community

To show that even after a diagnosis of Dementia there is still life to lead and things to be involved in

To involve people living with Dementia in Research from day one as part of the research team, for research to be done with us not for us.

To show that depending on ability we can provide valuable input into Ethics decisions

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