Join us on 20th July for the launch event of “Place, people, purpose and power – promoting the wellbeing of people living with dementia through personalised care and support” – Register for your place here.
DCAN, the open network of people and organisations seeking ways to personalise dementia care and support, is expanding.
Not only is the network growing in reach, with Think Local Act Personal joining NHS England, Alzheimer’s Society and Coalition for Personalised Care as a sponsoring partner, but also in our scope of interest.
We still seek to understand ways NHS England Universal Personalised Care can improve support provided by the NHS for people with dementia.
But that isn’t the right starting point. Nor is it enough.
To truly progress personalised care and support with people living with dementia and their families, we have to start with people not the systems.
Professionals asking “What matters to you?” really starts with people and families understanding “What matters to me and us?”.
Professionals asking “How can we help?” should be understood and experienced by people as “How can you help me achieve what is important to me/us now”.
Good person-centred questions from a mindful and supportive professional can be transformative. Yet this should never be separated from the gift of space, time and support people need to work through what is already within their power and agency to do for themselves.
Shift too quickly into a service or system perspective and we risk losing the vital ingredients that could otherwise have maintained a person’s choice, control and wellbeing. Perhaps even their identity and sense of self. Yet have insufficient capacity and capability in place to offer people, and we leave people unclear, unsure and unsupported with often devastating results.
Who can describe a meaningful life that even the most personalised health system imaginable could even come close to delivering in its entirety? Fundamentally this isn’t the purpose of the NHS, personalised or otherwise.
When it comes to personalising people’s experience of life following a diagnosis of dementia, services and support retain a vital and prominent role. But it’s a role that needs to be seen in the context of the lives people have or aspire to living.
DCAN will therefore move beyond an exclusive focus on Universal Personalised Care and instead focus upon all the strengths and assets people can be supported to draw upon at each stage of life.
It means understanding how people can help themselves by helping each other. Those very personal, unique relationships between people, families, neighbourhoods and communities which are central to our experience of value, purpose and meaning in life.
It includes understanding how people with dementia and families use everyday technologies, like Alexa, Google home, mobiles and iPads for support, as well as more specialised technology enabled care.
It’s about appreciating the role of large national charities and smaller, local voluntary community and social enterprise sector organisations in helping people live personalised, connected lives with dementia. Just as it’s also about the crucial part social care can play in helping connect people to what is most vital and important in their lives, whilst also meeting essential care and support needs.
And it continues to be about the part played by the NHS. In health promotion, providing timely diagnosis; personalised post diagnostic support; helping someone with dementia manage all their physical and mental health needs; in providing specialist support when required and in supporting people and families at end of life.
The six components of personalised care remain a core and vital part of a bigger story of change and improvement that people with dementia are long overdue.
We instinctively know where we want to get to. The familiar challenge is understanding how we do so.
This is a challenge DCAN embraces. In many ways It defines the network and certainly the gap we are trying to fill.
We will start with challenging the network to articulate the future we are aiming for. Without a north star powerful enough to bring all of us together in a common purpose, we will struggle to achieve the momentum necessary to sustain progress.
We won’t be starting from a blank page. To understand where we want to get to we will start with where we have been; making connections between concepts of personhood, person centred thinking, disability rights, the social model, independent living, as well as policy gains for personalisation in health and social care, and roadmaps for personalisation like Think Local Act Personal’s “Making it Real” framework.
DCAN have commissioned a new paper exploring these themes and more. Launching on July 20th 2022, “Place, people, purpose and power – promoting the wellbeing of people living with dementia through personalised care and support” traces the history of personhood and dementia, its relationship to the personalisation movement more broadly and where we need to go next.
The paper, a personal reflection from its author Neil Crowther, is intended to stimulate discussion and thinking. Our network will seek to harness the themes explored to help define our collective purpose and vision for the future. We hope as many of you as possible will be able to join us for the launch, it’s free and you can register to attend here.
Care and support is there to help us find a way forward towards the best life we can find. Rather than talk of system defined pathways, the challenge for the system is to understand how it can help people along their own path.
DCAN in 2022 exists to help us all understand the mindsets, mechanisms and models that will enable this fundamental shift to happen.
Through coming together today, aiming for a better future, we can also benefit in the here and now.
Join us on 20th July for the launch event of “Place, people, purpose and power – promoting the wellbeing of people living with dementia through personalised care and support” – Register for your place here.