CALLER: ” Hello is that the hospital?”
ANSWERER: “I’m sorry, that’s confidential”
A little over the top, maybe but for years concerned relatives, families and friends and carers have remained an untapped resource or have been completely excluded from vitally important news. Whoever comes into our care cannot be viewed in isolation of their whole network of relationships, yet seeing one person filling a single bed is a powerful barrier that prevents us seeing just that.
So the ‘Triangle of care’ came out – I can only applaud this and for the reasons above it has a very clear rationale. I was even more enthused to hear of the dementia specific triangle of care document ‘Triangle of Care – Best Practice in Dementia Care’. My first role in Dementia was as an independent advocate for inpatients with dementia in Ealing Hospital, London back in 1999. I could have done with the Triangle of Care documentation back then as something to wave at those staff who’d suddenly dive out of the way as I arrived on the ward – that bloke with the awkward questions. I also covered the local mental Health trust in the same site and could have done with it then as one lady was asked to take her husband home after he’d been admitted following a crisis 6 weeks previously. She’d had NO noticeable input from the team and remained equally ill-equipped as she had 6 weeks before to have him home. Why can we not work alongside BOTH partners in that relationship, providing tips, information, coping strategies?
I remained fascinated by the dynamic in the relationship between family members (this is very much key to the Getting Along Programme I am undertaking now in York thanks to Big Lottery and as an associate of Innovations in Dementia – see previous blog post) and also by the triadic nature of relationships when professionals enter the fray.
I do however have some concerns about the ‘Triangle of Care – Best Practice in Dementia Care’ work. Over several years visiting families and observing the changing dynamic within the relationship where one partner has a dementia, I have frequently noticed a real imbalance in the levels of control within those relationships. Increasingly carers would speak for and/or over the person with dementia – the discomfort when this was not appropriate grew inside me. The mushrooming of user groups (Gaining a collective voice through the Dementia Engagement and Empowerment Project – DEEP) is evidence too that a level playing field is being demanded.
When talking about my work in social circles (sad man that I am) I often hear ‘Oh it must be worse for the carer’. I always challenge this with the fact that it’s neither worse nor better but just DIFFERENT in terms of difficulty for both parties. The Carer’s movement through Carer’s Trust, Carers’ call to Action, and many other movements locally and nationally are rightly eloquent in demanding their needs to be recognised and the production of the Triangle of Care documents are a triumph in seeking a level playing field in getting their views heard in their encounter with health services who have traditionally hidden behind ‘confidentiality’ and other woolly defensive techniques.
The ‘Triangle of Care – Best Practice in Dementia Care’ document has 6 powerful standards in place to acknowledge carers and rightly so. If this is a best practice in dementia care document then we need to have similar standards for inpatients with dementia. This seems absent from this document. This document is in fact one side of the triangle and helps carers get listened to and included by health staff. From my work with couples to date I have frequently encountered situations where the voice of the carer is not always quite in sync with the voice of the person with dementia. I fear then that although it is important for a carers’ voice to be included, it could potentially go too far and over compensate and squeeze out the voice of the individual with dementia, already not at their eloquent best in a potentially hostile environment and being unwell.
‘Nothing about us without us’ is an increasing call from people with dementia around the globe now (about time too). So I have substituted the word ‘carer’ with ‘person/people with dementia’ in the 6 standards as below. This I propose would be a challenging document – challenging but not impossible.
1 People with dementia and the essential role they play
are identified at first contact or as soon
as possible thereafter
2 Staff are ‘People with dementia aware’ and trained in
engagement strategies with people with dementia
3 Policy and practice protocols regarding
confidentiality and sharing information,
are in place To keep people with dementia informed at every step about what is happening
4 Defined post(s) responsible for people with dementia
are in place.
5 A Person with dementia introduction to the service and
staff is available, with a relevant range
of information across the care pathway.
6 A range of person with dementia support services is
I really like the look of some of these standards. They can really enhance what is already a very good document. As it stands, however, it is missing one side of the triangle. Huge amounts of positive work around including the person with dementia and the creation of dementia-friendly acute hospital areas are underway around the country – it might be worth marrying both strands of work to really include the person with dementia on that triangle and to avoid over compensating on any side – be that staff, carer or person with dementia.
Damian November 2014