Thanks to Andy Burnham for emphasising “care co-ordinators” which I feel are pivotal to living well with dementia

This morning I had a present for Andy Burnham MP (@andyburnhammp), about to lead the Labour troops into battle for the European elections. The present is of course a copy of my book ‘Living well with dementia’, which is an account of the importance of personhood and the environment for a person living with dementia.




In my article entitled “Living well = greater wellbeing” for the ETHOS Journal (@ETHOSJournal), I highlighted the critical importance of the ‘care coordinator':

So, if one had unlimited funds, what sort of service could be designed to provide care and support for people with dementia? In my opinion, the answer is a very different one. Ideally, all services, which could include healthcare, housing and legal systems, would adapt quickly and flexibly according to the needs of the individual living with dementia. This would need to be managed by a named, long-term co-ordinator of care and support.”

In reply to my article, Paul Burstow MP commented helpfully:

“The idea of a care navigator able to call on and coordinate all available health and social care, as well as housing support and voluntary sector provision is a persuasive one. It is something that the Richmond Group of charities, among others, have for a long time called for – and it is something I would like to see the Liberal Democrats deliver in the next government. Better managed and coordinated care would be a huge step forward and could make all the difference to dementia sufferers and their often strained carers.”

And Andy gave it much prominence this morning:

The King’s Fund (@TheKingsFund) has previously looked into co-ordinated care for chronic conditions.

In this framework, a “care co-ordinator” acts as a single point of contact and works with the patient, their carer(s) and the multidisciplinary team to develop a care plan.

Once this has been agreed, the co-ordinators work with the team, the patient, the patient’s family and other care providers to deliver co-ordinated and coherent care. Personal continuity of care is actively encouraged, and the care teams work hard to ensure an immediate response to care needs as they arise.

The care co-ordinator becomes he patient’s advocate in navigating across multiple services and settings „„providing care directly in the home environment.

He or she also „„communicates with the wider network of providers (outside of the core multidisciplinary team) so that information about the patient/carer is shared and any actions required are followed up.

The King’s Fund has previously found that the type of person undertaking the care co-ordination function varied greatly.

Most care co-ordinators had been community or specialist nurses, yet the role has also been taken on by non-clinical ‘link workers’ (in Sandwell) and health and social care co-ordinators (in Torbay).

There also appears to be a continuum from the non-clinical approach – primarily providing personal continuity to service users and acting as their advocate to ensure that care is co-ordinated around their needs – to the clinical approach, in which a case manager would also be able to provide clinical care directly.

This, I feel, is significant, as my book ‘Living well with dementia’ has a very non-medical thrust.

It’s very much a n0n-authoritarian, non-hierarchical approach where each person, including the person living with dementia, has an important part to play.

Influences on someone living well with dementia might include design of a home or ward, assistive technologies, ambient-assisted living, “dementia friendly communities”, for example.

With the introduction of ‘whole person care’, it’s possible that the care co-ordinator for a person living well with dementia might become a reality.

In this construct, Andy Burnham MP, Shadow Secretary of State for Health, is trying to stop the overhospitalisation (and overmedicalisation) of people.

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