Championing the rights of people living with dementia

16 May 2017

In the past ten years, the landscape has changed significantly and the profile of dementia has risen in policy, research and practice. The Prime Minister’s challenge on dementia 2020 gave a further boost to the interest in dementia care across the country.

Certain organisations, including ourselves at the Mental Health Foundation, have also advocated for a more preventative approach to dementia, especially in relation to the inequalities faced by people living with dementia and the significant co-morbidity with mental ill health. A growing focus on the links between public health and dementia is promising in reflecting how dementia is beginning to be seen through lenses that go beyond the traditional medical model. But we are not there yet.

Progress in dementia has stalled for too long because of a substantial but narrow focus on developing new pharmacological treatments, confusion around the understanding of the wider public of the range of conditions involved under the umbrella term, and lack of systematic application of human rights approaches in the relevant practice and research.

Thus, we are still facing considerable challenges in taking dementia into wider policy spheres, which is why a focus on fundamental values, equality principles and human rights is still urgently needed. We have tried to address this gap with the VERDe project.

The Values, Equalities, Rights and Dementia network (VERDe) has connected people with dementia, carers, practitioners, policy makers, services, organisations and communities across the UK. Through a series of events, VERDe has aimed at increasing awareness and understanding about how values, rights and equalities affect people with dementia and can help improve dementia policy and practice.

VERDe has enabled productive conversations between experts by background and experts by experience. We have:

  • facilitated the sharing of positive stories of empowerment and hope
  • explored ways to support people in their transitions (e.g. into care homes)
  • recognised that people living with dementia should be treated as persons, not just patients
  • advocated for cross-agency communication and national policies informed by people
  • explained the human rights deficit that exists in dementia and how supported decision-making works.

But our collaboration and network does not stop here. We will keep working with our partners, including Innovations in Dementia and the Dementia Engagement and Empowerment Project to champion the voice of lived experience and help sustain this active community.

Above all, we will strive to remember what one of our dementia activists stated: that people diagnosed with dementia are humans and the people who care for those with dementia are humans too. Therefore, a lot of the issues we want to discuss are, above all, human rights issues. And we know how human rights issues can impact on people’s mental health. 

So, the simplest intervention we can start with is to make sure that the human contact and emotional support for people living with dementia is always there.

VERDe has been coordinated by the Mental Health Foundation, supported by Innovations in Dementia, and funded by the Joseph Rowntree Foundation and the Life Changes Trust (which is funded by the Big Lottery Fund).