In spite of frequent calls for it, more time, more money and more staff to solve our issues in health and social care will not be forthcoming. The need to revisit how many of us operate has become increasingly pressing. We must innovate.
People did not stop getting dementia during lockdown, nor did dementia go into lockdown for those already diagnosed.
I was going to title this blog ‘Learning from Dementia Voices – Lessons for a post-pandemic world’ for that is what it is about. We have in fact compiled a more complete report under that title that we encourage you to read here. It is full of links to fantastic resources that can help us all.
In the meantime, I want to issue a challenge or a call to action to all of you whether working in Health, in Social care, in the Arts and in Academia, or anywhere for that matter.
When the pandemic hit, we were all very much out of kilter and initially at a loss as to how we might respond. It’s at times like these that we must go back to those people at the heart and start of our work. It’s still and always has been about hearing and heeding the voices – the Dementia Voices.
The dementia voices are out there as an inexhaustible resource and, over the last couple of years, they have told us though word, deed, creativity, action and inaction so much about what is needed. For example:
We must prioritise and invest in a relationship-focused approach that can begin in the pre- or post-diagnostic period. Get in touch with us to find out more about Getting Along facilitator training as well as opportunities to shadow the practical intervention for you and your colleagues.
It is so important to tap into the creative potential of people living with dementia. Do visit the Dementia creatives site – home to an array of brilliant displays of creativity, art and film and is full of examples of where people with dementia have led groups and shared their skills with others, rather than being ‘done to’.
We need to promote awareness of the capacity that people with dementia have to find and share their own strategies. The Dementia Tip-share site is there for all to use and to contribute to. A great self-management resource is the brilliant ‘co-produced’ My Life My Goals cognitive rehabilitation resource. This came out of the new ‘Living With Dementia Toolkit’
We should all recognise and resource the power of peer support. Every area needs groups of people with dementia that are growing, evolving, interested and engaged. It is no accident that certain groups are always keen to get involved in projects and research. It’s born of a freedom and a sense of belonging to a group, something that is common to all those groups in the existing DEEP network. Start building your own local peer network and tap into the national conversation too!
People with dementia should be supported and resourced to take the lead in ALL dementia-related learning and development. Who better to learn from than people living the experience? This learning is not only for peers (such as with A Good Life With Dementia programme) but also for all workers, volunteers, families involved in the field of dementia care.
Support and resource groups of people with dementia in your area to investigate their own questions that will naturally crop up as peer groups continue to meet. The experience of peer groups in the driving seat of their own research and the legacy of resources coming out of the Dementia Enquirers programme means together we can make research accessible to all.
Finally we must support access to the free space of the Dementia Diaries site! It has served as a treasure trove of information and insight for educators, researchers, policy-makers and journalists.……but most importantly, for others with dementia.
In summary
People with dementia CAN (if given the right opportunities and support) create, express themselves, welcome, befriend, research, host, lead, teach and learn together… so they SHOULD! This is our call.
It is not a new call. It was first made in 2013 in the brilliant JRF publication: A Better Life: Valuing our later years, written by Imogen Blood. Please read this still relevant report. She asks all of us to address these 7 challenges that I have paraphrased below. In our work…..
- Is it ‘all of us’ or ‘them and us’?
- Can we see beyond the label?
- Can we help people connect?
- Can we focus on what people CAN do?
- Can people be active citizens?
- Do we really listen to what people really want?
- Are we reflecting, questioning and challenging?
People who say ‘we already do that’ are probably referring to only a few elements of those seven challenges. However, they are all interdependent – yet not impossible to achieve together.
The reference to co-production and self-management approaches that we have referred to here, are based on real examples and they match the desires of people receiving services. We have a massive untapped resource amongst relatives, neighbours, fellow service users and our own workforce. Sometimes the solutions are really simple – of course more staff, more time and more money will help (they are long overdue!). In the meantime, the need to revisit how many of us operate has become increasingly pressing. We must innovate.
Come with us!
Damian Murphy
Co-Director, Innovations in Dementia
