Met on 6th February at the RCN to discuss co-production and how expert knowledge plus lived experience are both needed to remove frustrations experienced by people living with dementia.
Key messages:
It is important that everyone is seen as an equal partner with no hierarchy, agreeing purpose and commitment in the co-production process.
A definition of co-production: A relationship where professional and citizens share power to plan and deliver support together, recognising both have contributions to make in order to improve quality of life for communities.
If co-production works well it should empower people but only if all partners are sincere in their desire to achieve worthwhile projects, sharing aims, goals, expectations and challenges. People living with dementia and other life limiting conditions ‘ don’t want cakes but we want the keys to the bakery.’
As expected, the need for leadership among the workforce with positive relationships to achieve successful collective actions was highlighted at the outset.
The Alzheimer’s Society Dementia programme board acts as a critical friend of government to drive change. There comprises 19 commitments in the 2020 challenge. Health and care delivery, dementia awareness and social action and research are the primary areas.
Firstly, in Health 2/3 now get a diagnosis but it is varied across country, depending on where you live. Training is varied along with underdeveloped End of life care and palliative care.
Awareness is another key area. There are now 481 dementia friendly communities and 3 million dementia friends. However better understanding is needed to know how to manage it iCarer course
More help is also needed for BAME, remote and traveller communities.
A dementia research institute is to be set up which will promote the 25% of people who should be included in clinical trials.
How we harness technology requires validated evidence of what is good and what does not work.
The Government state that they want the UK to be the best place in the world but it is not collecting data in order to drive improvement and more citizen engagement would help as not much is happening at the moment.
Skilling up the workforce along with a timely diagnosis and support, person centred support was another aspiration discussed (The 360 Standard Framework and A&A tools) . The Social prescribing personalisation agenda should help to drive this also.
In terms of prevention we need to improve healthy behaviours for prevention. This will be the same for a number of other conditions, not just dementia – ‘what’s good for the heart is good for the brain’, including diabetes among others.
Dementia statements were launched to empower people have their say and build confidence in different aspects of daily life. Accompanying these is the legal imperative which will underpin the statements. It is important for seldom heard groups about their rights in law as part of the equality act. Dementia is a disability that requires reasonable adjustments rather than Services to fit around person. www.nationaldementiaaction.org.uk
This document helps people know their rights. Improve public awareness in GP surgeries. For all those living with and providing a service. People have a right to know what services are open to them and helping them to find activities that are based on their lives and preferences.
Maintaining brain health - this can be targeted. Symptoms may vary across culture and ethnicity. Keeping body and brain active. Community groups engagement is needed. The quality of relationships is pivotal.
Although there is evidence of appropriate care plans, the value of a Care co Coordinator systematically put in place with protocols was raised. This is a good idea and requires investment for long term benefits and sustainability.
Transport is key to social isolation and is preventable; getting people out of their houses.
In terms of research speaking with a person with dementia, drawing out of them, real stories. People with dementia should be in driving seat of research.
The Dementia experience toolkit - co produced was the final product was launched. There are 6 key elements- rights based approaches, 6 boxes with subdivisions and a section on social prescribing.
Interactive resource. Downloadable templates www.alzheimers.org.uk/dementia-experience-toolkit
Carers leading change in dementia - uK network First commissioned carer network