Filling the peri-diagnostioc gap –BLOG 3 of 3 Time to be Getting Along©

So having pointed the finger at the UKDementia Congress and the Triangle of Care work for their unwitting perpetuation of the stress and burden model – an approach that goes nowhere to recognising the daily interdependence of all parties in a relationship – and having exposed the PM’s dementia Challenge as a movement that can actually DELAY the provision of real support, what do we do to enable these 3 well-intentioned initiatives to really respond to the need now?

1 A good start and one which I believe is in the pipeline is a dementia friendly conference, where we pull together rather than against each other. The care for carer approach seems to thrive off the stress and burden model of care and clearly implies a certain blame on the person with dementia. The advance of user groups around the UK is very encouraging and the work of the Dementia Engagement and Empowerment Project (DEEP) is producing a lot of excellent work in establishing a more consistent and formal representation of the voice of individuals living with dementia. Both sides here are interdependent and we must promote that message.
Testimonies like those jointly made by James and Maureen McKillop where difficulties are acknowledged and where common ground is also recognised need much more prominence. Such a conference can put out a message that really backs up the ‘Living well’ title of our national strategy and that puts an end to the language of ‘war, suffering, and fighting’ far too often associated with dementia in the popular press.

2 Let’s continue to build the equilateral triangle of care.
Below are some of the key standards set out in the triangle of care guide..
Carers and the essential role they play are identified
Staff are carer aware and are trained in carer engagement strategies
Defined posts responsible for carers are in place
A carer introduction to service and staff is available
A range of carer support services is available

They are all admirable but are only one side of the triangle – re-writing another side of the triangle for people with dementia is easy yet very challenging – essentially if you read through the document and replace ‘carer’ with ‘person with dementia’ you have a powerful, liberating document that truly recognises all sides of the care triad. Thus the document would propose that
‘views and knowledge of the person with dementia are sought, shared used and regularly updated’
‘staff are dementia aware and are trained in dementia engagement strategies’
‘An introductory letter/orientation from the team or ward explaining the nature of the service provided and who to contact. An appointment with a named member of the team to discuss the individuals’ views and involvement’. ‘Information packs for people with dementia.’

3 my point – Getting Along©
Finally and most importantly it is here that I propose how we can best fill what I call that peri-diagnostic gap of support. If we all see the antagonisms within a relationship (and we do – care workers report this to me all the time) then we must respond otherwise crisis follows crisis and gaps between respite get shorter.

The Getting Along© programme is a series of 4 or 5 semi structured sessions with the couple together (not separately) that acknowledge the impact of a dementia; the history of the relationship; how individuals see themselves and the issue of control and power in that relationship; and at specific difficulties. The principal of interviewing couples together is to really gauge the dynamic and tensions within a relationship; and to strive to redress an all too frequent des-equilibrium within the relationship. It concludes with a group session of up to 4 couples who have been on the Getting Along© programme which itself can become a self sustaining inclusive peer support group. It enables couples to put down the rope and gets people together safely and gratuitously. It levels the playing field to give both parties an equal voice and it can equip front line workers with the wherewithal to address both sides of the caregiving relationship – it is what will even up the triangle of care and what will equip those people to go out and access what could well be a dementia friendly community outside their front door.

What might be the cost for such a highly skilled intervention? Well that depends if we want to have highly qualified expensive specialists involved in facilitating all these sessions? Ideally would we not want an Admiral nurse to be leading on something like this? – perhaps, but if we wait for one of them (fantastic as they are) we will have missed the boat. There are not enough of them and they are all too busy to take on another project. I nearly entitled this article ‘What’s the point of Admiral nurses?’ as an attention grabber – not in any derogatory sense but just in recognition of their scarcity. Getting Along© is not necessarily adding another layer of contact with people but rather enhancing the contact we already provide with many families. Work I have done with front line staff regardless of qualification has frequently unearthed some real diamonds and this programme has the same potential. Facilitators for such work can come from amongst those on the front line and very soon a sustainable model can be created with the benefits of a more highly skilled and motivated workforce, able to see beyond the confines of a list of tasks to their own part in the movement towards dementia friendly communities.

We need to act now and clinical commissioning groups need to look at how they might wish to plug this peri-diagnostic gap, to pre-empt relationship breakdown, to equip front line staff and to delay admission to long term care. Local authorities too need to invest now in more community-based services for people with dementia and their families. In my own City of York the local authority currently has around 200 beds for people with a dementia in long term care settings. Local statistics report a prevalence of around 12,000 people in York with a dementia. Investment needs to match that ratio.

In conclusion I am convinced we can fill the current no-mans-land of peri-diagnostic support through diagnostic INVOLVEMENT in the form of Getting Along© long before the diagnostic process is complete; and that at the same time we can address the current irony that most care is delivered by the least qualified staff – through equipping those front line staff with key skills in delivering real and practical support without the long wait for the referral to the specialist practitioner.

For more information on Getting Along© and the training programme for community-based staff that goes alongside please contact dementiafriendly@btinternet.com

References:

Adams T and Gardiner P (2005) Communication and interaction within dementia care triads: Developing a theory for relationship-centred care. Dementia 4(2) 185-205.

Alzheimer Europe Conference Luxembourg (2010) – Facing dementia together: People with dementia and their carers
Dieter Ferring (Luxembourg): Who cares for me? – Trends in family caregiving in European countries available at http://www.youtube.com/watch?v=BlfNyxnXNr8

Carers’ Trust and RCN (2013)The Triangle of Care Carers Included: A Guide to Best Practice for Dementia Care Available at http://www.rcn.org.uk/__data/assets/pdf_file/0009/549063/Triangle_of_Care_-_Carers_Included_Sept_2013.pdf (Accessed 13 January 2014)

Kitwood (1997) Dementia Reconsidered: the person comes first. Buckingham: Open University Press

Murphy D. (2006) Relationship-centred work with couples. Journal of Dementia Care 14(1) 35-37

Zeisel J (2010) Hearing the cry ‘I’m still here ‘ in the midst of grief and loss. Journal of Dementia Care 18 (2) 2

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