Championing the rights of people living with dementia – the VERDe project

This blog was first published on the Mental Health Foundation’s website by Dr Antonis Kousoulis, Assistant Director of Development Programmes at the MHF. 

Antonis Kousoulis

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

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.

“Taking Local Action”

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).

A festive thank you!

As the festive period is well and truly upon us and another year draws to a close, I wanted to take this opportunity to reflect briefly on our journey over the last twelve months and to thank everyone who has worked with and for the Trust – helping to make it such a successful and rewarding 2015.

Our Annual Review for 2014-15 – which you can find here – highlights what we have already funded and our future funding plans. I hope you share my view that it’s inspiring to read about the benefits already achieved for care experienced young people and people affected by dementia through our funding to date – for example, our two individual award pilot schemes. I also hope you feel as excited as we do about the potential benefits our active and planned future funding awards will bring to our beneficiaries in the years ahead.

We held our first National stakeholder event, in November 2015. The event was called “Connect, Build, Transform” because the Trust believes it is only when we really listen to what people affected by dementia and care experienced young people want and need and empower them to connect and work with others to achieve positive change – that their lives be truly transformed for the better.

The Trust has now been active for two and a half years and, as this year closes, I think we have made good progress on our journey to becoming an effective funder – enabling those we fund to improve the quality of life and well-being of people affected by dementia and care experienced young people across Scotland.

Warmest wishes for a happy and peaceful festive period, and my heartfelt thanks for helping to make 2015 a better year for so many.

Maddy Halliday
CEO
Life Changes Trust

Welcome to the Life Changes Trust inaugural blog

Pile of stones generic

Hello and welcome to the Life Changes Trust inaugural blog post!

I can hardly believe that it’s just over two years since I first stepped through the doors of the Trust’s new office in June 2013 – as its first employee! Trustees, staff and our voluntary advisors have worked very hard since then to set up an effective organisation and operation to allow us to deliver our mission effectively: driving transformational and sustainable improvements in the quality of life, well-being, empowerment and inclusion of care experienced young people and people affected by dementia.

The Trust is a strategic and engaged funder, committed to working with others to achieve our mission.  We developed the Trust’s strategy and are developing our funding plans by consulting widely and working with a key individuals and organisations, including our beneficiaries. Our beneficiaries are central to our work – we listen to what they have to say and use their knowledge and expertise to guide all that we do.

And now here we are in September 2015 – with several funding initiatives complete and showing real benefits, with many more funding initiatives underway and still more in the pipeline. We are very excited about progress to date and our future plans. We are optimistic that by investing wisely and working well with others, the Trust’s funding can, over time, make a significant contribution to improving the lives of our beneficiaries.

I hope you will follow the work of the Trust and also work with us when possible. You can get our latest news on our website, through social media or by signing up to our e-bulletin, details of which are all below. From now on, Trust staff, Trustees and voluntary advisors will be blogging regularly, so you will get the chance to hear from them directly.

We would also love to hear your views, so please feel free to leave a comment.  Until next time!

Maddy Halliday, CEO, Life Changes Trust

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