We think it is time to start thinking about the rights of people with dementia.

We think the more we talk about and use the rights of people with dementia, the more our services, culture and attitudes will change for the better.

DEEP voices and human rights

Can a greater focus on human rights make life better for people with dementia? In this discussion, recorded in December 2022, Toby Williamson facilitates a discussion with an expert panel, which includes Howard Gordon, Nigel Hullah, Prof Tom Shakespeare, Neil Crowther and Lucy Series.

You can watch it below:

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Our dementia, our rights

The more we talk about and use the rights of people with dementia, the more our services, culture and attitudes will change for the better.

This guide has been authored by Philly Hare on behalf of the Dementia Policy Think Tank. This group – which is a member of the UK wide DEEP network – was set up in 2016 by a number of people with a diagnosis of dementia who have a particular interest in promoting rights and influencing policy issues.

Living with dementia is a challenge, and you may well need support. But getting the services and help you need is not always easy. This booklet explains why it can be helpful to know–and talk about–your rights.

Rights can help us to uphold shared values in challenging circumstances. The language of rights can help you feel more confident and empowered. Although rights and laws are about everyday life, they can feel complicated. However, there are services, helplines and advocates who can help you to ask for what you need, and to challenge decisions when they seem to ignore your rights.

Click here or on the image below to view the pdf

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Dementia rights and the social model of disability

This report from the Mental Health Foundation argues that viewing dementia as a disability rather than an illness would unlock the potential for policy to be developed and services designed, delivered, and monitored by people living with dementia.


As a result, people living with dementia will have a strengthened ability to advocate for appropriate levels of investment in social care so they can live as active citizens in the community.

The report was commissioned by JRF and Innovations in Dementia supported people with dementia to be involved in writing it.

Click here to view pdf


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Making an impact together

As the DEEP network grows, people with dementia are gaining more and more skills and expertise about how to make an impact through collective activism.

They are starting to write blogs, make films, write books and booklets, speak at and co-chair events, and challenge the status quo. We want to support them in sharing and developing this knowledge.

In 2016, a number of DEEP member groups worked with Philly Hare to co-produce a booklet called ‘Making an Impact Together’. This draws on their experience of setting up and running influencing groups to have an impact – and aims to share their learning with others in the DEEP network. The booklet has since been translated into Japanese and is being used by the emerging dementia movement in Japan.

Click here or on the image below to view the pdf

Making an Impact Together


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Shadow report to the UN convention on the rights of persons with disabilities

In 2017, iD supported one of the DEEP groups – the Dementia Policy Think Tank – to co-produce a shadow report which was submitted to the United Nations Committee for the Convention of the Rights of Persons with Disabilities.

This ground-breaking report includes many examples, quotes and stories that highlight the abuses of rights of people with dementia. We also supported Keith Oliver, a member of the group, to present the report in person in Geneva.

Click here to view the pdf

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iD Response to Enquiry into Dementia and Disability

In Summer 2018 the All Party Parliamentary Group on Dementia consulted on Dementia and Disability.

Click the ‘Show more’ button to view a link to our response.

Innovations in Dementia Response – Click here to view the pdf.

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Other resources

What is truth? An inquiry about truth and lying in dementia care.
What is Truth an Inquiry about Truth and Lying in Dementia Care.

What can countries in the UK learn from each other about values, equalities and rights in policy and practice affecting people with dementia? Report of the first VERDE meeting. Read more

How can and should UK society adjust to dementia? Read more

Starting with Rights: looking through the other end of the telescope
video by Philly Hare

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