“How has Covid-19 impacted on the priorities for personalised care for people living with dementia?”
That’s the question we found ourselves asking earlier this year when it became clear that we were facing a health and social challenge like no other, and that people with dementia were going to be amongst the hardest hit.
Back in January we had held our first Dementia Change Action Network Assembly in London. Well over 100 people with dementia, carers, health professionals, social workers, academics and voluntary, community, and social enterprises came together to explore how Universal Personalised Care could transform peoples experience of dementia.
It was a lively, optimistic, challenging yet also realistic discussion. I, and I know many others, left the day tired but enthused and excited by what the future held.
We had barely worked through the piles of post it notes and made sense of what the opportunities ahead might be, before it became clear to everyone that the future we looked forward to was going to be fundamentally changed by a global pandemic, the like of which hadn’t been seen for more than 100 years.
What the event held just a few weeks before had revealed was a genuine enthusiasm, not just for personalised care but also for building something new and fundamentally different in a spirit of collaboration, co- production and with people with dementia as the most important contributors.
It was clear Personalisation mattered, and so did DCAN. We didn’t want that spirit to be lost in the desperate urgency of COVID but we knew things would inescapably be different for all of us and that things would have to change.
But how would they need to change? What matters now in a world changed by Covid-19?
The first conclusion we reached was that the comprehensive model of personalised care still mattered for dementia. Working together across sectors and with people with lived experience still mattered and therefore so did DCAN. With continued support from NHSE/I and Alzheimer’s Society we remained active and able to play our part.
Our first action was to respond directly to the challenges and inherent dangers of lockdown by repurposing our early design for our new website into a pop up website offering ideas and tips for things to do at home whilst distancing. www.distancingwithdementia.org.ukremains live and is being reviewed and updated in readiness for the autumn and winter months ahead.
Our second response was to explore how we might harness the goodwill and positivity of our unique network of people and professionals into addressing the immediate and medium term challenges of Covid-19.
Our choice was to launch an open enquiry under the banner of “What Matters Now?” Through this enquiry we will be activating our network to gather the best ideas, evidence and insights to learn what is needed from different perspectives and how we can work together to make it happen. This work will assist us to shape and support collaborative, co-ordinated action nationally and locally.
Amongst the core questions for this Enquiry are:
- What are the challenges being faced by people with dementia following COVID-19?
- How has Covid-19 changed priorities for personalised dementia care?
- How can personalised care help people with dementia deal with the impact of the pandemic now and in the future?
- What personal strengths have people discovered in themselves and their networks that has helped them? What support have people found they needed most?
- What has worked and we want to keep? What has been difficult and we need to find better solutions for?
- What has been the impact of Covid-19 on health inequality?
- What are the short, medium and longer term priorities for personalised care now?
There will be others I’m sure. Our approach will be flexible enough to accommodate them and we will go where the talking and thinking takes us.
If you want to add your voice, contribute your work or insight, or feel your way forward through COVID-19 in the company of others who share your passion, principles and face similar challenges, then get in touch and join the DCAN network. It’s open, free and evolving, and it will richly benefit from your involvement. Together we will all hear, see, learn and achieve more. That’s more important now than perhaps ever before.
To add your ideas and thinking to this Enquiry, join the dedicated Enquiry Slack group or contact us.
Our new DCAN website launches 20th October 2020 and will includes news of events, blogs and other resources. An NHSE Summary Guide to Dementia & Universal Personalised Care, including a section on COVID-19 will be available early in the New Year.