Nobody left behind for advanced dementia? The importance of co-production in care.

?

?

Dementia creates significant precarity and disadvantage for those affected, including family carers. ?The stress placed on all carers of those with advanced dementia raises additional social justice concerns, especially given that carers often lack adequate support and resources.? Ensuring dignity, protection, and quality care for this vulnerable population is an ethical imperative.

?

The?TLAP National Co-production Advisory Group?says the following about co-production:

?

'Co-production is not just a word, it is not just a concept, it is a meeting of minds coming together to find shared solutions. In practice, co-production involves people who use services being consulted, included and working together from the start to the end of any project that affects them. When co-production works best, people who use services and carers are valued by organisations as equal partners, can share power and have influence over decisions made'.

?

Further interesting aspects of co-production are here.

?

Every month, I sit on the Carers’ Council for Central and North West London NHS Foundation Trust. It is an educational experience.

?

I’ve been struck by how many of us carers of people with advanced dementia had never been listened to. As far as the system is concerned, they are "invisible". The truth is, however, that we cannot make policies in health and social care in the dementia space without drawing on people with me with lived experience of what it is like to care.

?

Change often arrives unexpectedly, as Clinton says in the new podcast (see below). In my case, it was when I suddenly found myself as a that unpaid family carer for my mum with dementia from her diagnosis in 2016, to her death in 2022. It was a r?le that I tried to do to the best of my ability, but one which I felt I was totally unprepared for.

?

A real lightbulb ‘listen’ for me was listening, very early this morning (!), to Dr Clenton Farquharson CBE on the latedst King’s Fund podcast.

?

Clenton is an Associate Director of Think Local Act Personal, and a passionate advocate for inclusion and equality in health and social care, with work including TLAP, SCIE, the NHS Assembly, and the NHS Quality Board. He is so much more than a collection of titles and r?les. His personal back story and motivation, I feel, are remarkable.

?

In this King’s Fund podcast, Clenton quotes a well-known saying, “If you’re not at the table, you’re probably on the menu”.

?

So true.

?

He reassures us that we need “fortitude” and perseverance in getting our message across – and if others don’t seem willing to listen, it’s probably just “they’re not ready yet”. This new Government possibly brings up new opportunities.

?

We need solutions for better dementia care fast – and an invigorated social contract between all of us in the development of a new National Care Service for England may be a pivotal, new national conversation for us.

?

The mantra and programme "Time to act" are prominently, and rightly, used in calls for reforming care and support systems in England. There's a growing consensus on the need for change in supporting carers and making care more equitable. This need is for immediate, concrete steps towards improvement and reform.

?

There is some interesting background here, as Clenton explains.

?

John Lewis was a prominent American civil rights activist and politician who dedicated his life to fighting for racial equality and social justice. He was known for his philosophy of "making good trouble" - nonviolent resistance against unjust laws and practices.

?

Intriguingly, Clenton quotes John Lewis's concept of "making good trouble" ?- and this mantra can certainly be effectively applied to how carers can influence social care policy. ? It points to a robust, acceptable, means of activism.

?

In my view, carers can embrace this spirit of "good trouble" by actively advocating for changes in social care policy that benefit both carers and those they care for. This might involve organising opportunities or events to raise awareness about the challenges faced by carers and the need for policy reforms. We should directly contacting local representatives to share personal experiences and push for policy changes.

?

Carers can educate others, including the public, about the realities of caring and the need for far better support systems. This could involve speaking at community events, writing op-eds, or using social media to share their stories.

?

It is important for people like me, one of the very many former carers, to join carer support groups and organisations to amplify our carers’ collective voice and to increase en masse an impact on policy decisions such as the new NHS Long Term Plan. Carers can identify and challenge policies that are detrimental to their well-being or the quality of care they provide. This might involve legal action or civil interventions when necessary. We need to advocate for real policy improvements, even when progress seems slow or there is a palpable inertia or resistance.

?

Learning from both successes and our setbacks can refine an approach to influencing social care policy. ?I remember full well the time we had when the Health and Social Care Act (2012) was going through parliament. Experienced carers can guide and inspire younger carers or students interested in healthcare policy, ensuring the continuation of advocacy efforts.

?

Carers can become powerful agents of change in all integrated dementia health and care policy. This approach encourages us all to challenge unjust systems, raise awareness, and chip away at work towards better support and recognition for carers.

?

The phrase "nobody left behind" in co-production has its longstanding origins in disability rights and social inclusion movements. But some of us have been historically left behind. The phrase emphasises the importance of ensuring all voices are heard and of all stakeholders being meaningfully involved in designing and delivering services, including those who may be most marginalised or vulnerable. It's just no good if some people aren't invited for a seat at the table, once, or twice, or nearly always.

?

?

Carers of people with advanced dementia are often at risk of being excluded from co-production efforts for quite “innocent” reasons, often.

?

Caring responsibilities may make it difficult for carers to participate in meetings (even Teams or Zoom meetings) or consultations. The sheer exhaustion and emotional 'burden' of caring for someone with advanced dementia can make turning up to engagement events challenging. As dementia progresses, carers may become increasingly isolated, making it harder to connect with support networks and participatory processes. That was my experience, in fact.

?

People living with advanced dementia are frequently denied their fundamental human rights including dignity. Individuals can be actively discriminated against based on their condition, having their autonomy and decision-making capacity disregarded, lacking access to appropriate levels of care and support, also experiencing social isolation and stigma. And some of the paid carers themselves can be some of the most disenfranchised members of our modern capitalist societies.

Including carers of people with advanced dementia in co-production is important because they have invaluable first-hand experience of the opportunities and challenges faced in advanced dementia care. ?They can advocate for the needs of those who can no longer speak for themselves. My mum hardly said a word towards the end. But Mum was never "cancelled".

There's much valuable work still to be done to see how identities combine in discrimination, e.g. the 'older woman' - a phenomenon called intersectionality.

?

I believe strongly that nsuring that those with advanced dementia are treated with respect and have their rights protected is a matter of social justice, inclusion and equality.

And thank you Clenton!

?

?

@dr_shibley

?

?

?

?

?