Principles for Research, Advocacy, and Policy

New Zealand Dementia Foundation > Resource Hub > Principles
Improving Care Through Public Policy 

Laura Thornhill and Rachel Conant (USA)

Discusses how policies can move us closer to the realisation of dementia-related goals, using US examples.

The Human Rights of People Living with Dementia: from Rhetoric to Reality 

Dementia Alliance International, 2016 (UK)

The purpose of this guide is to explain why we believe rights are so important for protecting the interests of people living with dementia worldwide.

Alzheimer Europe’s Position on Involving People With Dementia in Research Through PPI (Patient and Public Involvement)

Alzheimer Europe, 2017 (UK)

This paper reflects Alzheimer Europe’s position on PPI (patient and public involvement) in dementia research and highlights the challenges, potential risks, and benefits associated with meaningful involvement. 

Ensuring a Human Rights-Based Approach for People Living With Dementia 

World Health Organisation, 2015

The United Nations-acronym “PANEL” represents the basic principles of human rights: Participation, Accountability, Non-discrimination, Empowerment, and Legality.

Ethics of Dementia Research

Alzheimer Europe, 2011 

This report, entitled “The Ethics of Dementia Research,” provides a detailed discussion of the main ethical issues involved in conducting dementia research ethically. 

DEEP: The UK Network of Dementia Voices 

DEEP (UK)

DEEP stands for the Dementia Engagement and Empowerment Project – it is the UK network of dementia voices. DEEP consists of around 100 groups of people with dementia. The DEEP website includes a number of good practice guides for organisations, including involving people living with dementia in advisory groups, writing information and websites, and consulting with people living with dementia.